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How do support workers understand their role supporting the sexuality of people with learning
disabilities?
Karla Maguire
Submitted for the Degree of
Doctor of Psychology(Clinical Psychology)
School of PsychologyFaculty of Health and Medical Sciences
University of SurreyGuildford, SurreyUnited KingdomSeptember 2016
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Abstract
Background: Despite positive attitudes amongst support staff towards sexuality, adults with
learning disabilities report being dissatisfied with the support they receive. This research
aimed to explore how support workers understood their role in supporting the sexuality of
people with learning disabilities.
Method: Six support workers from supported living services completed interviews and
vignettes exploring their role. Data was analysed using interpretive phenomenological
analysis.
Results: Three themes emerged which were understood as suggesting that support workers’
held both complex and conflicting affective associations to their role supporting sexuality.
This was interpreted as creating an ambivalence that resulted in them distancing themselves
from having an active role in supporting sexuality.
Conclusion: This study concluded that support workers may inadvertently express an
understanding of their role that may be consistent with negative and limiting discourses about
the sexuality of people with learning disabilities. This study reiterates the need for sexuality
training.
Keywords: Sexuality, Learning Disability, Support Worker, Role, Responsibility
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Acknowledgements
Thank you to all the supervisors, both research and clinical, who have supported me
throughout training. I am grateful for all of the help, advice and guidance.
A big thank you to all of my friends and family. You have always been there through
the many ups and downs. A special thanks to my fellow trainees Danni and Emma. I could
not have done it without you.
Finally, the biggest thank you is to my husband Michael. Thank you for always
supporting me, believing in me and encouraging me in everything I do.
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Contents
Major Research Project
MRP Empirical Paper…………………………………………………...Page 5
MRP Empirical Paper Appendices……………………………………...Page 51
MRP Proposal…………………………………………………………...Page 84
MRP Literature Review ………………………………………………...Page 97
Clinical Experience
Summary of Clinical Experience……………………………………….Page 144
Assessments
Overview of Academic Assessments…………………………………..Page 148
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Major Research Project Empirical Paper
How do support staff understand their role in supporting the sexuality of people with a learning disability?
Year 3
April 2016
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Statement of Journal of Choice
Target Peer Reviewed Journal: Journal of Applied Research in Intellectual Disabilities
Impact Factor: 1.137
The Journal of Applied Research in Intellectual Disabilities has been identified as a suitable
peer reviewed journal for the publication of this paper. This journal accepts original papers
and qualitative research.
Sexuality is a topic of interest to a variety of healthcare professionals that support people with
learning disabilities. Sexuality can be supported by care, therapeutic and medical services.
Therefore this journal is particularly suitable as it is aimed at a multidisciplinary readership.
The journal advocates valued lifestyles for people with learning disabilities and lists sexuality
as a topic of interest.
6
Abstract
Background: Despite positive attitudes amongst support staff towards sexuality, adults with
learning disabilities report being dissatisfied with the support they receive. This research
aimed to explore how support workers understood their role in supporting the sexuality of
people with learning disabilities.
Method: Six support workers from supported living services completed interviews and
vignettes exploring their role. Data was analysed using interpretive phenomenological
analysis.
Results: Three themes emerged which were understood as suggesting that support workers’
held both complex and conflicting affective associations to their role supporting sexuality.
This was interpreted as creating an ambivalence that resulted in them distancing themselves
from having an active role in supporting sexuality.
Conclusion: This study concluded that support workers may inadvertently express an
understanding of their role that may be consistent with negative and limiting discourses about
the sexuality of people with learning disabilities. This study reiterates the need for sexuality
training.
Keywords: Sexuality, Learning Disability, Support Worker, Role, Responsibility
7
Sexuality encompasses a wide range of experiences that contribute to our self-
identity. During the 20th century, negative discourses, attitudes (Craft & Craft, 1981; Mitchell
et al.,1978) and practises (Garbutt, 2008) towards the sexuality of people with learning
disabilities dominated societal belief systems and resulted in people with learning disabilities
being denied the opportunity to express their sexuality.
The complex and abstract nature of sexuality makes it difficult to define. The World
Health Organisation (WHO) conceptualise sexuality as a multi dimensional construct
including sex, gender and intimacy that can be expressed via attitudes, behaviours, roles and
relationships throughout the lifespan (WHO, 2006).
Dominant Discourses
The discourses surrounding societies' understanding of sexuality for people with
learning disabilities has impacted on the ways in which sexuality needs have been
approached by care services. Giami et al. (1983) discussed that people with learning
disabilities were frequently perceived as ‘sexually innocent’ or ‘sexually deviant’. The belief
that they were ‘sexually innocent’ and lacked sexual needs resulted in them being infantilised
and portrayed as asexual perpetual children (Craft & Craft, 1983; Deloach, 1994). This stance
promoted that people with learning disabilities were sexually vulnerable and in need of
paternalistic protection (Spieckler & Steutel, 2002). In contrast, the belief that they were
‘sexually deviant’ was founded on the assumption they were unable to understand or control
their sexual desires. As a result, the dominant approach to the sexuality of people with
learning disabilities became one of managing what were judged to be problematic sexual
behaviours (Antonak et al., 1989; Hattersley et al., 1987; Toomey, 1993).
Wolfensberger (1972) pioneered a rival discourse; the philosophy of normalisation.
This endorsed that people with learning disabilities should be supported to engage in a wide
range of normalised life experiences and become valued members of the community. As this
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discourse became more accepted, it influenced policy such as Valuing People (Department of
Health [DOH], 2001) meaning services were obliged to adopt values and practices consistent
with choice, rights, inclusion and independence. In response to this, person centred support
was implemented by many services which aimed to explore the life experiences and roles that
are important and meaningful to people with learning disabilities. In practice this meant
individuals sexuality, sexual identity and relationships should be considered and supported.
Currently, following incidents such as Winterbourne View (2010) there has been
increased focus on the roles and responsibilities of support workers. As a result, charities
such as Skills for Care promote a minimum skill set and training induction for support
workers. This includes a focus on support workers understanding of their role and the
influence of their personal values and beliefs on the care provide.
The Role of Support Workers
The responsibility for enabling normalised life experiences often lies with support
workers. In line with the normalisation discourse and person centred support, their role is
defined as enabling people with learning disabilities to have choice and control over their
own lives (DOH, 2008). Exploring support worker’s own perception of their role, Windley
and Chapman (2010) found they shared this understanding and conceptualised their role as
maximising individual’s quality of life. However the authors acknowledged that staff may be
guided by their own prejudices and priorities regarding ‘quality of life’ rather than those of
the person they support; a practice contradictory to the ethos of person centred support.
Having the most daily contact with people with learning disabilities and being responsible
for facilitating opportunities for normalised life experiences arguably places support workers
in a position of power. They have a degree of control in the range of choices and levels of
support they offer people. Consequently, through their actions and interactions they can
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promote or inhibit a person’s autonomy and independence (Brechin, 1998; Grimby, 2002;
Swanson, 1991).
This power is evident in relation to sexuality as it is consistently reported that the
attitudes and behaviours of support workers are central in determining the opportunities that
people with learning disabilities have access to (Brantlinger, 1983; Brown & Pirtle, 2008)
including their sex education and experience (Bazzo et al., 2007; Swango-Wilson, 2010).
It is recognised that people with learning disabilities experience difficulties with
constructing their identity due to holding a position of little power and can become
constrained by the definitions of more powerful others (Wilberforce, 2014). Arguing from a
social constructionist perspective, Gangon (1977) suggested sexuality is created and learnt
from the social environment. From the actions and reactions of others, humans develop an
understanding of the social and emotional components of sexuality (e.g. what is attractive to
others, appropriateness of behaviour). In practice this means support workers, as a more
powerful other, not only have a role in facilitating access to opportunities and experiences
related to sexuality, but can also hold a defining role in the development of the person’s
understanding of their sexual identity. In acknowledging this important role, a large
proportion of research in the field of sexuality and people with learning disabilities has
focussed on exploring staff attitudes towards this topic.
Attitudes Research
A systematic literature review on attitudes towards the sexuality of adults with
learning disabilities was conducted (by the author) in March 2014 across a range of relevant
databases (Psycinfo®, Medline®, Web of Science™). Search terms to encompass
terminology relating to learning disability (‘intellectual disab*’/‘mental handicap*’/‘learning
disab*’) were combined with AND sexuality OR ‘sexual identity’. Articles which did not
focus on the attitudes of others towards sexuality, published pre 2000 and those not available
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in English were excluded. Twenty articles met criteria. This included qualitative and
quantitative studies with the majority of research using Likert scales to capture attitudes.
(Appendix B). The review explored the types of attitudes that existed and revealed the
majority of current research (70%) concluded the presence of ‘positive’ attitudes towards
sexuality. Positive attitudes were classified as authors reporting ‘positive’, ‘liberal’
‘accepting’ and other appropriate synonyms when concluding their findings (Appendix C).
When extracting studies with support worker samples, the presence of ‘positive’ attitudes
increased to 75%. This finding was considered to reflect the acceptance of the current
philosophy of normalisation as an influential discourse in care services.
Yet recent evidence from people with learning disabilities has highlighted some
dissatisfaction with the support they currently receive for sexuality issues and indicated
normalisation and person centred approaches were not consistent practice. People with
learning disabilities reported sexuality is a topic of direct interest to them (Azzopardi-Lane &
Callus, 2014). However they alleged that staff and services worked with protective policies
and procedures that restricted their choice and denied their privacy (Bernert, 2011).
Azzopardi-Lane and Callus (2014) found that the support they received can limit their sexual
expression and exert control over their relationships. Fitzgerald and Withers (2013)
established women with learning disabilities had difficulty developing positive sexual
identities and recounted being told sex was something they should not talk about and that
they were not allowed to have a boyfriend.
In summary, recent research suggests on the whole, positive attitudes towards the
sexuality of people with learning disabilities exist. Yet in practice, people with learning
disabilities report being dissatisfied with the support and opportunities they have access to
regarding their sexuality. On the basis of this disconnect, it could be considered that support
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workers positive attitudes are not being translated into positive support experiences for
people with learning disabilities.
Critique
When discussing attitudes it is important to acknowledge the range of criticism
directed at traditional approaches to researching attitudes. In the papers examined in the
literature review described above, Likert scales were the most frequently used measure. This
measure required respondents to record their attitude by marking a continuum of agreement.
Social psychologists, Potter and Wetherell (1987) expressed reservations about the
conclusions drawn from data based on this type of measure. Firstly, respondents are left to
construct their own meaning of the scale terms (e.g. what may represent an
agreeing/disagreeing attitude) leading to inconsistencies. Secondly, further meaning is lost
when the original scale terms are interpreted into a broader conclusion. For example,
respondents indicating a lack of acceptance may have led researchers to conclude negative
attitudes, however these are not synonymous concepts. The respondents’ meaning can be lost
by the researchers’ interpretation; this is particularly so when considering the above point,
that the lack of definition of scale terms means the respondent is heavily reliant on their
personal interpretation. Finally, they note attitudes are not static therefore research using
attitude scales captures only a moment of thought. Hence conclusions made on this basis are
reflective of one contextual moment rather than a wider discourse.
The link between support workers’ attitudes and their practice is clearly not a simple
one. As a result of the complex relationship between attitudes and behaviours, attitude
research has provided limited insight into this area. Due to the gaps in our knowledge,
research on the topic of sexuality continues to require an exploratory qualitative approach to
provide more in depth understanding that disentangles some of the complexity of the topic.
On the basis of this, Rushbrooke et al. (2014) conducted a timely meta-synthesis of
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qualitative research that explored caregivers’ experiences of supporting sexual needs.
Seventeen relevant papers were identified and appraised using the Critical Appraisal Skills
Programme (Public Health Resource Unit, 2006). The meta-synthesis revealed five themes
present in the current qualitative literature that reflected caregiver’s experiences of supporting
sexuality. These themes portrayed how supporting sexuality was difficult for caregivers.
They experienced a tension between wanting to reduce risk and increase independence.
Rushbrooke et al. (2014) reported that although it was acknowledged that sexuality was
‘natural’ for all, the appraised studies conveyed that a person having a learning disability
added to the complexity of supporting sexuality.
Most importantly, Rushbrooke et al’s. (2014) theme ‘fear and uncertainty’ highlighted
the lack of confidence caregivers experienced about dealing with sexuality issues. Studies
reported caregivers felt their competence and emotions were a barrier to offering support for
sexuality. A training deficit in sexuality and learning disabilities has consistently been
highlighted (Futcher, 2011; McConkey & Ryan, 2001) despite recommendations for more
training (Christian et al., 2001; Yool et al., 2003). Once again, Rushbrooke et al. (2014)
highlighted a lack of training and policy available to guide those supporting sexuality issues
and recommended the need to both develop and evaluate training packages. Given the current
absence of training and policy, caregivers are clearly finding their role in supporting sexuality
difficult. To further illuminate and understand their experiences it was considered helpful to
explore how support workers understood their role supporting sexuality, considering what
frameworks and understandings they used to conceptualise their role. In her book on
sexuality and learning disabilities, Craft (1996) suggested eight roles staff may take in
relation to supporting sexuality; role model, teacher intervener, counsellor, protector,
advocate, empowerer and liaising with others. Despite these roles being suggested, to date
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there has been a lack of research directly asking support workers how they perceive and
understand their role in supporting sexuality.
In summary, there are a number of competing discourses regarding sexuality and
people with learning disabilities. The attitude literature has reported the presence of positive
attitudes towards sexuality by support staff, inferring normalisation to be the dominant
discourse shaping the support that is offered. However, some studies suggest that people with
learning disabilities’ experiences of support for sexuality issues has not been congruent with
this. Offering support for sexuality issues is complex with additional factors such as
confidence, skills and knowledge all potentially affecting the ways in which support has been
offered. As discussed, support workers hold a position of power when offering support, the
way they conceptualise and understand their role in relation to supporting sexuality will
influence their interactions and approaches. Additionally, there is a need for training and
guidance on how to support sexuality needs for people with learning disabilities. Further
information on how support workers conceptualise their role may contribute to the
development of this training.
Research Question
The current study aimed to explore how support staff understood and conceptualised
their role in supporting the sexuality of adults with learning disabilities.
Methodology
Qualitative methodologies enable an understanding of experience and processes
(Harper & Thompson, 2012). Due to the mismatch between attitudes and experiences of
support, the limitations of traditional attitudes research and an absence of research exploring
support workers understanding of their role in relation to sexuality, an exploratory and
inductive qualitative approach that allowed themes to emerge from the data was necessary.
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Interpretative Phenomenological Analysis (IPA)
IPA was considered to be well suited to addressing this research question as it is a
qualitative methodology that explores the experience of participants and their perceptions of
their experiences. Being a phenomenological approach, IPA examines experience from the
individual’s perspective rather than using predefined abstract categories (Smith et al., 2009).
It employs a double hermeneutic approach which recognises that in exploring the participants
understanding, the researcher is influenced by their own world view. Therefore the analysis is
the researcher’s interpretation of the participants’ understanding and experience (Willig,
2001). Its idiographic approach enabled a detailed understanding about the perceptions and
understanding of each participant. (See Appendix D for further detail on choice of
methodology)
Epistemology
This research adopted a social constructionist perspective. This epistemological stance
considers that ‘what we perceive and experience is never a direct reflection of environmental
conditions’ but is mediated by our historical, cultural and linguistical influences (Willig,
2001). IPA assumes that data is able to inform us about how participants are making sense
(Smith et al., 2009) and therefore shares the belief that meanings are constructed by
individuals in their personal and social words. In adopting this position I used a reflective
diary to be aware of the impact of my own experiences and values and how this shaped my
interpretations of the literature and data.
Method
Participants
The study aimed to recruit 6-8 participants based on the guidance for doctoral level
IPA research of 4-10 participants (Smith et al., 2009).
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A purposive sampling strategy was employed to capture a relatively homogeneous
sample for whom the research question was significant so as to examine the variability of a
specific group in detail (Smith et al., 2009). Therefore the following participant eligibility
criteria were applied; fluent in English, over 18 years, hold a support worker role with ten or
more hour’s 1:1 contact per week with people with mild/moderate learning disabilities in
residential/supported living services. Originally a minimum of 12 months’ experience as a
support worker was required, however due to recruitment difficulties this was reduced to six
months in line with the contingency plan.
Six support workers from three different service providers agreed to participate. Five
particpants were female. Particpant’s age ranged from 25–54 years. Three had between six
and ten years’ experience supporting people with a learning disability and three had five
years’ or less.
Religion- Atheist 1- Christian 3- None 2
Age- Under 25 1- 25-34yrs 2- 35-44yrs 2- 45-54yrs 1
Table 1: Partcipant DemographicsInterview Schedule
A semi structured interview schedule (Appendix E) was developed following the
guidance of Smith et al. (2009). Ten questions, including 4 vignettes, were drafted to elicit an
interview lasting approximately one hour (Smith et al., 2009). Vignettes were included to
allow actions to be explored in context and provide a less personal, therefore less threatening
way to explore sensitive topics (Barter & Renold, 1999). Further, Shankar (2008) reported
vignettes were an effective method for generating discussions about sexuality issues within
medical and healthcare professions.
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Gender- Male 1- Female 5
Ethnicity - White British 5- Black African 1
Experience- <5yrs 3- >5yrs 3
The schedule began with open questions aimed at gaining information on how the
participants understood their role supporting the sexuality of adults with learning disabilities.
Following this, vignettes explored how participants would respond and approach scenarios
and what they would believe their role to be in each situation.
The interview schedule and vignettes were developed in consultation with a research
supervisor with experience of working in learning disability services to ensure vignettes
reflected issues that might occur in practice. The schedule was piloted with a colleague. The
pilot was audio recorded, reviewed and no revisions were made.
Participants also completed a demographic questionnaire (Appendix F) to record sample
characteristics.
Recruitment
Service managers of third sector care providers for people with learning disabilities in
the South East of England were identified by the researcher and field supervisor. They were
emailed about the research and to request a recruitment meeting with their staff (Appendix
G). Initially two service providers were approached to promote the homogeneity of the
sample. One provider declined so two further providers were contacted in order to achieve
satisfactory recruitment numbers.
A recruitment meeting was arranged between support workers and the researcher.
Staff received an information pack including an information sheet (Appendix H), consent
form (Appendix I) and researcher contact details. Twelve support workers attended
recruitment meetings. Following the meetings, seven support workers volunteered and a
convenient time and place for each interview was arranged. One participant withdrew before
the interview.
Procedure
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In order to promote a collaborative approach, the interview schedule was shared with
participants prior to the interview commencing. This enabled them to consider issues before
the interview and also supported the procedure of informed consent given the sensitive nature
of the topic. Prior to the interview, participants were briefed on their participant rights by a
participant information sheet and verbal discussion. This discussion included outlining that
data may be accessed by the researcher, research supervisors and a transcriber. Following this
a consent form was signed and the interview commenced.
Interviews lasted from 42-59 minutes and were conducted in a private and confidential
location at the participant’s place of work. Interviews were audio recorded on a Dictaphone
and transcribed verbatim by the researcher and a transcriber.
Ethical Considerations
This study gained ethical approval from the Faulty of Arts and Human Sciences at the
University of Surrey (Appendix J).
Participants received an information sheet briefing them on their rights and were
required to sign a consent form. As sexuality is a sensitive topic a range of ethical issues,
including safeguarding were considered and addressed (Appendix J).
Analysis
Analysis of each transcript began after the interview was transcribed. Data analysis
followed the guidance outlined in Smith et al. (2009). Firstly, audio recordings and transcripts
were re-visited to enable the researcher to become familiar with data. Secondly, initial coding
was completed to comprehensively record descriptive content and language use of interest.
Following this, further coding on the right hand side of the transcripts added suggestions and
interpretations of participant meaning. This resulted in a list of emergent themes for each
transcript. Finally, patterns and connections across transcripts were analysed to develop
themes and superordinate themes.
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Yardley (2000) outlines four principles to assess the quality of qualitative research.
Appendix K outlines how these principles were addressed to promote the quality and validity
of this research.
Reflections
Throughout all stages of the research process I kept a reflective diary. Appendix L
details excerpts of this diary and further reflections on my personal experiences and
assumptions which may have influence the research process.
Analysis
Three superordinate themes emerged from the analysis that offer an understanding of
how support workers conceptualised their role in supporting people with learning disabilities
with issues relating to sexuality.
Figure 1: Theme map - How do support workers understand their role in supporting sexuality?
The figure above represents the three super orindate themes and outlines their
contributory themes. Themes emerged that indicated support workers had to manage the
competing roles of facilitator and protector. The conflicting values associated with these
roles resulted in their role being conceptualised as A Juggling Act. Support workers reported
drawing on a range of influences that guided them in understanding their role. These
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A Juggling Act
Facilitator - Offering Support - Communcation Channel - Holding a Normalised View
Protector - Manging Vulnerability - Holding the Helicopter View
There is No Rulebook
Personal Infuences
External Influences
Sexuality is Complex
Keeping Sexuality at Arm's Length
I haven't really had any dealings with it
They might peck each other on the lips but no more
than that
I'd take it higher, thats the way it
goes
Superordinate Theme
Theme - Sub Theme
influences were interpreted as changeable as they varied between individuals and the
precedence of each influence could change dependent on the situation and context. This was
understood as support workers conveying There is No Rulebook that defines their role
supporting sexuality. Analysis revealed that support workers also held a view that their role
supporting sexuality was insignficant. Evidence for this arose from support workers’
comments that were interpreted as being dissmisive of sexuality needs. This analysis
suggested that this reflected Keeping Sexuality at Arm’s Length. These themes are presented
in detail below. To provide clarity, some words have been added in quotations to provide
contextualising information. This has been indicated by square brackets around inserted
material []. Where material has been removed within a quote to manage length this has been
indicated by…. To maintain anonymity gender neutral pseudonyms have been used.
1. A Juggling Act
All participants described understanding their role as both a facilitator and as a
protector. Further analysis suggested that they saw their role as A Juggling Act in which they
attempted to negotiate these two aspects of their role. Charlie was able to reflect directly on
this juggling act, explaining the aim is to offer support to the individual but thoughts and
actions were entwined with the need to consider safety and protection.
‘I would ... say you know ‘it sounds like this is something you interested in
[watching pornography], it’s something you’d like to be doing. It is an adult thing to
be doing and looking at and you are an adult now. It’s about exploring how to do that
in a safe and protected way’ (Charlie)
Others reflected this ‘juggling’ theme over the course of their interview by fluctuating
between expressing facilitative and protective values. Jo expressed strong values related to
being a proactive facilitator of sexuality.
20
‘you see that person not the disability, and you support them to lead the life that they
want’(Jo)
Later in the interview Jo also reported safety to be an important value.
‘at the end of the day as long as she’s safe um, that’s all that matters’ (Jo)
This was common across interviews and was interpreted as support workers often needing to
hold both roles in mind and having to vary the significance placed on each role dependent on
individual services user’s needs and the context.
In discussing the need to consider protection, most participants focused on the
protection of the person with a learning disability whilst Fran also talked about the need to
incorporate thinking about protection of one’s self.
[Re: supporting access to internet pornography] ‘it’s his needs, it’s his right so you
can’t stop it, so I’ll go to the people above me again and talk to them [facilitation
role]...see if its right for him as there might be history or some reason why there are
restrictions on [protection role]...I wouldn’t go and access the internet and do all that
myself for him.....because it could fall on my head [protection for self] (Fran)
This superordinate theme highlighted how support workers think they have two key roles to
hold simultaneously which they are required to evaluate and reprioritise as necessary. This
was interpreted as A Juggling Act as it expressed the need to manage several things at once,
be flexible and quickly adaptable.
Facilitator
Three subthemes were interpreted as representing an understanding by support
workers that they held a role in being a facilitator. Participants described a number of aspects
of their role that indicated they understood Offering Support for sexuality needs was part of
their job. They also described being The Communication Channel between the people they
21
supported and the wider society and vice versa. Participants also demonstrated a commitment
to Holding a Normalising View.
Offering Support
All participants showed a clear belief that they had a role in offering support for
sexuality issues. Advice and education dominated their narratives. Sam explained how they
gave informal guidance about appearance and relationships.
‘for instance (giggles) one of them will say, ‘shall I wear these trainers with this dress
tonight [meeting boyfriend at the disco]?,’ and I’ll go, ‘please don’t put brown
trainers on with a pretty black dress,’ and no socks and sandals’ (Sam)
Charlie expressed that they held a role in providing education.
‘most of the time it’s just about gently prompting or guiding that person on
appropriate behaviours, modelling, or telling them when is the appropriate time to
touch parts of their body or to be able to say certain things’ (Charlie)
The dominance of these types of support was considered to reflect support workers believing
they were responsible for guiding people with learning disabilities to adhere to social norms
and assimilate with the expectations of society.
Practical support to access professional services was also seen as important.
‘obviously supporting her if she needs to go and see the nurse [re:
contraception]...helping her to do that’ (Jo)
The Communication Channel
In being a facilitator, support workers viewed themselves as a communication channel
both gathering and giving information. This involved directly talking to the person with a
learning disability about sexuality but also to other professionals and agencies.
‘show them where they can get the information that they need... [they]have access to
the internet, they have got laptops, and there’s certain websites that they can look at
22
um, to find out certain information...and obviously you can contact the GP, or the
nurse, if it’s to do with contraception or anything like that’ (Jo)
Jo’s extract demonstrated how support workers understood they had a responsibility for
creating communicative links that enabled access to additional support and information
beyond the support workers’ skill set.
Nic illustrated that communication was not restricted to verbal communication but
also involved gathering information by observations of behaviour and mood.
‘some of them can’t talk, they cannot tell you but you have to observe and see what’s
happening, why is it happening... that’s why we are there for them, to try and find out
and talk for them what they cannot say’ (Nic)
Being The Communication Channel suggested support workers saw themselves as a
link between the person and wider society. This was understood as reflecting a fundamental
belief that people with learning disabilities cannot directly access mainstream society without
support. This analysis proposed this belief was the driving force behind support workers
stressing the importance of their role in communication; as without their support, the
principles of normalisation might be unachievable for people with a learning disability.
Holding a Normalising View
Particpants expressed viewpoints that could be interpreted as them holding a
normalising view. They described people with learning disabilities as sexual beings with the
same needs and desire as other adults.
‘it’s normal you know, people you know have sex, it’s part of their life and um, just
because you have learning disability doesn’t mean you can’t’ (Jo)
Charlie expressed the importance of support workers advocating the rights of people
with learning disabilities and understanding that these rights were equivalent to those of
people without a learning disability.
23
‘I have known in the past people who have said it would be inappropriate for people
with learning disabilities to engage in sex or think about masturbation or erm, talk
about sex in any way. I think we have to be very careful about that and the balance
between that and taking away their right to be a sexual being as any other person
would be’ (Charlie)
Some participants illustrated this normalising view in describing their attempts to enable
people with a learning disability to actively engage with normalised life experiences.
‘they’re just like you and...it shouldn’t be no you can’t, ok it’s, it’s let’s see what’s the
safest way we can do this for you, you know, just because you’re having to, have a
learning disability doesn’t mean you shouldn’t be able to do something, you know,
we’ll find ways round for you to be able to do it’ (Jo)
In this analysis the theme of Facilitator represented how support workers viewed
themselves as a link between the person with a learning disability and wider society. Their
comments suggested that they adopted facilitative strategies which aimed to increase the
accessibility of normalised life experiences for people with learning disabilities.
Protector
Two subthemes contributed to the theme of protector. All participants saw a key part
of their role as involving protection from harm by others. In adopting this role they expressed
a belief that people with learning disabilities are vulnerable and that they had a part to play in
Managing Vulnerability and risk. In doing this, participants expressed the need to adopt a
wide perspective (Holding the Helicopter View) that encompassed all aspects of a situation in
order to make fully risk assessed decisions.
Managing Vulnerability
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Based on their understanding of people with learning disabilities as vulnerable,
support workers believed they must ‘sort of keep an eye out’ (Sam) and take responsibility for
providing supervision and protection.
‘it’s my responsibility to make sure Sandra [vignette character] is safe, as much as if
it was me or you, it’s not something we would want, somebody knocking on the door
[if alone in bedroom with boyfriend] all the time but for Sandra because she is
vulnerable it has to be.’ (Nic)
Nic believed people with learning disabilities were different to ‘me or you’ due to their
vulnerability and expressed how this difference underpinned the need to prioritise the role of
managing safety. Although others discussed the need to manage vulnerability they did not
explicitly compare themselves with people with learning disabilities and instead alluded to
differences which drove their need to consider protection.
In addition to supervision, participants described having an active role in managing
vulnerability and safety which meant them taking issues forward with actions.
‘if she’s thinking of having that type of relationship that she’s going to be
protected....She’s on the pill or knows about condoms....if it ever came to it that’s
something we’d be doing for the girls here we’d be, you know, going to the doctors and
you know, making them an, an appointment with at least the nurse’ (Sam)
Holding the ‘Helicopter View’
Participants explained that they frequently had to consider multiple facets of a situation in
making decisions and offering support. They understood their role as filling the gap, by
noticing and assessing the aspects that a person with a learning disability may have difficulty
considering due to their cognitive impairment. This was interpreted as them holding the
‘Helicopter View’ – a position where they could rise above the situation in order to scrutinise
all of its features.
25
Ali suggested that people with learning disabilities were unable to hold this position
themselves.
‘because if it was you or I it would be fine but because they’ve got learning
disabilities you have to try and help them to come to a decision that’s the right one for
them’ (Ali)
Jo, Charlie and Fran discussed how this included the concrete practicalities of a
situation e.g. travel arrangements for a weekend away with a boyfriend, finances etc.
‘I guess it would be thinking about logistics as well, like how far would they be
travelling, how are they getting there, thinking about other aspects of safety as well’
(Charlie)
This suggested support workers did not consider sexuality issues in isolation. They adopted
the helicopter view in order to assess all relevant issues at once. However, they also
commented upon their role in making judgements.
‘perhaps see him [client’s boyfriend]a bit more and .....Staff get, you know, bit more
of an idea of whether he’s all right or not’ (Sam)
‘I think it would be a wise idea as a support worker to try and find out a bit more
about Jim [vignette character], his background and his intentions...to support Sandra
[vignette character] to and make a wise decision in terms of him staying the night’
(Charlie)
This indicated that support workers assumed their personal opinions were valuable to the
situation. Taking the helicopter view enabled them to feel they could adopt the wise position
that overcame and managed the vulnerability of the person with a learning disability. Again
this was interpreted as showing there was a difference between people with and without a
learning disability that underlie support workers’ understanding of how to approach support
needs.
26
2. There is No Rulebook
Participants commented on factors that influenced their perception of their role. These
influences varied between participants. The ways in which they drew on these influences was
dependent on the situation and context. This communicated a lack of certainty as to how they
made sense of their role and was interpreted as them having conveyed There is No Rulebook
for understanding their role. In practice this meant they were unable to adopt any routine
responses and needed to complete an ongoing evaluation of each individual situation and its
influencing factors making sexuality a difficult area to support.
Participants frequently spoke about feeling unsure of their role in response to the
different circumstances described in the hypothetical vignettes used in the interviews. They
often stated that they had not experienced these particular situations before. Ali and Sam’s
uncertainty was reflected in their hesitance to answer and expression of not knowing.
‘I don’t know if it would feel different but I might not .... I don’t know. I don’t know
just I hope I would be alright still talking about it’ (Ali)
‘Um, I don’t know really, I’ve never, never really thought about it ... Not I don’t, not,
I don’t, I’m not a big one for talking about things like this so yeah, not really anything
that I would think about I suppose’ (Sam)
Charlie expressed this directly and appeared to show an acceptance of uncertainty being
inherent in the role
‘when you’re working with learning disabilities you have got to expect the unexpected
to some degree’ (Charlie)
Sexuality was considered a complex undefined topic that left support workers with a
sense of uncertainty about their role (Sexuality is Complex). Alongside this ambiguity, they
were unable to exclude the influence of their personal beliefs and experiences (Personal
Influences) and the pressure of service and client factors (External Influences).
27
Personal Influences
Participants commented upon personal characteristics such as religious and moral beliefs,
experience and age.
Some suggested that they understood their role better with experience.
‘when I first started doing support work I was only 17 years old and had I walked into a
situation where someone was touching themselves or exposing themselves or talking
explicitly about wanting to have sex then I probably would have found that very difficult
at the time, just because of my own inexperience and lack of knowledge. So I think it’s
something that grows, not just with age but with experience in the job and the more
people you support the more you begin to understand individual needs and wishes’
(Charlie)
Ali and Nic both acknowledged that personal beliefs would have a negative impact on how
they responded to a person with a learning disability requesting to watch pornography.
‘Well it’s not really something I would really want them to sit and watch’ (Ali)
‘that one would be a hard decision for me because I myself am not, I find pornography
bad’ (Nic)
Nic went on to explain feeling unable to adopt a role in supporting this but acknowledged this
personal belief should not stop another member of staff offering support.
‘I will ask if they can allocate somebody else to deal with... it’s their right, so it’s not
like, because I’m not comfortable with it I’m going to stop you from doing’ (Nic)
Support workers were able to recognise that their own personal influences could
potentially have a positive or negative impact on the ways in which they made sense of their
role.
28
External Influences
At an organisational level, training and induction provided some participants with an
understanding of their role in supporting sexuality. Jo described how the team dynamics and
service values could influence the ways in which support workers conceptualised their roles.
‘it’s all about the organisation...how you are inducted into the team...sometimes it’s
quite good to work with younger people that have never, had any experience in care,
because you can show them ...cos it’s quite hard sometimes to change the way the
older generation think, and especially when they’ve been working in these other
places’ (Jo)
Also factors relating to individual service users such as age and level of disability affected
how they considered their role.
‘he’s still only young [to watch pornography, age 18]’ (Ali)
‘my last two placements the learning disabilities were um, more severe than here so, that
[sex and relationships]wasn’t something I ever thought about’ (Sam)
Factors particular to the service and the individual with a learning disability contributed to the
sense that There is No Rulebook that could be applied to supporting sexuality. Support
workers’ role could be redefined by the service they work in and the ethos promoted by the
service and team. Similarly, the individualised needs of the service user could change their
perspective on what their role would be e.g. whether to prioritise being a facilitator or
protector.
Sexuality is Complex
Participants described sexuality as a complex support need. Sexuality seemed to be
viewed as on a spectrum with some aspects being easier to support than others.
For example, in response to a vignette where a male with a learning disability asked to
buy a dress, all participants acknowledged that they had a role in meeting this need. They
29
were able to express this quickly, succinctly and appeared comfortable with this role except
Nic who said ‘for me it’s kind of, not normal for a guy to buy a dress’. Most did not appear to
be concerned about supporting this aspect of sexuality.
In contrast, a vignette where a female with a learning disability requested that her
boyfriend that she had met online stayed the night, generated more mixed responses. Most
described a lengthy process where risk and capacity would need to be assessed and a team
decision made. From this it was interpreted that aspects of sexuality associated with higher
risk to the individual were viewed as more difficult to support and to be a more challenging
role. Sam expressed this in relation to pregnancy suggesting risk to others also increased the
complexity.
I’d be struggling working with somebody like her coz I think she’d, she’d want to get
pregnant and she wouldn’t be able to look after a baby on her own, she’d never
cope ...her behaviours quite erratic, and a bit silly, a bit immature, and stuff, so I
think I, I’d be struggling trying, be worrying about her....All the time that, oh god you
know, that’s, that she’s going to get pregnant and then what happens...I’d be
struggling working with somebody like her (Sam)
3. Keeping Sexuality at Arm’s Length
‘Keeping Sexuality at Arm’s Length’ comprised three themes. Though participants
understood themselves as having a role as a facilitator and protector (as discussed above),
these three themes gave a sense that they did not believe they had an important role in
relation to sexuality. It was seen that they did not take a proactive stance but worked
reactively with sexuality issues; only engaging in sexuality topics when they arose or were
requested.
‘we don’t go into detail unless (giggles) they’re actually asking for [it], if they wanted to
know something’ (Jo)
30
This understanding of their role as reactive could demonstrate them unconsciously
distancing themselves from an active responsibility for supporting sexuality, thus ‘Keeping
Sexuality at Arm’s Length’. There was a sense that they avoided sexuality by not ‘dealing’
with it (I haven’t really had any dealings of it), minimising its importance (They might peck
each other on the lips but no more than that) and adopting a position where they lacked
autonomy to make decisions and support sexuality (I’d take it higher, that’s the way it goes).
It was interpreted that this may have been an unconscious process which participants did not
directly articulate in the research but which became visible through the interpretive analysis.
‘I haven’t really had any dealings of it’ (Ali)
Participants described how issues regarding sexuality were a rare occurrence.
‘I can probably count the times on one hand where I have had to deal with behaviour
or a conversation of a sexual nature’ (Charlie)
‘All our guys here, none of them have shown sexual interest or anything’ (Nic)
‘There’s not very much [sexuality needs] here’ (Fran)
In addition to not ‘dealing’ with sexuality issues, participants also demonstrated that they did
not engage in thinking about issues relating to sexuality.
‘I’ve never, never really thought about it... not really anything that I would think about I
suppose’ (Sam)
Only Jo differed from this view and said sexuality was an issue that came up frequently. ‘It’s
often quite a common subject [sex and relationships] here, we talk about it quite a lot’.
Interestingly, this was a direct contrast to other support workers working within the same
service. This perhaps implied that sexuality needs were present. Given the multi dimensional
definition of sexuality and all it encompasses (WHO, 2006) sexuality would ordinarily be
expressed frequently. Support workers who described such an absence of sexuality were
considered to be expressing a ‘blindness’ to sexuality; an avoidance of seeing sexuality. This
31
interpretation was supported by Jo’s contrasting view where Jo was able to ‘see’ sexuality as
a frequent occurrence.
‘They might peck each other on the lips but no more than that’ (Ali)
The language participants used to describe sexuality and relationships for people with
learning disabilities demonstrated that they looked upon their relationships as not being
‘adult’ or ‘complete’.
‘they just meet up at their local disco, sit and chat, hold hands have a dance then we go
home [laughs] nothing really, yeah that’s about it really. (Ali)
‘I think mainly the way they see having a boyfriend is, is a friend that ... That’s a boy...I
don’t think it’s any more than being friends with a boy, particularly’ (Sam)
In this analysis this was considered to imply some support workers minimised the
importance of relationships and sexuality for people with learning disabilities which
contrasted with their views on normalisation (Holding a Normalising View) discussed above.
No support worker explicitly reported they minimised sexuality but rather the way they
talked about sexuality implied this. For example, evidence of both a normalised adult view
and contradictory minimising language were apparent within the same interview. This was
clearly demonstrated in one interview where in response to a vignette about a young adult
male interested in wearing male clothes Fran replied ‘ah that’s cute isn’t it’. ‘Cute’ is a child
like term that could be interpreted to suggest it was not taken seriously as an adult choice.
However Fran then went onto to explain that it would be the individual’s right and something
they would be happy to support.
Sam’s giggling when describing the relationship experience of a person with a learning
disability again suggested it was not viewed seriously.
‘I think at one point (giggles), at one point he did buy her a little, a little ring that was
supposed to be (giggles) an engagement ring’ (Sam)
32
Similarly referring to the people they support as ‘girls’ rather than women suggested a
childlike perception of people with learning disabilities.
I’d take it higher, that’s the way it goes (Fran)
Support workers appeared to see their role as quite limited. They did not feel able to
make decisions independently and often said they would have to check care plans and risk
assessments or seek advice and permission from managers. Despite being the person with the
most direct contact with the person with a learning disability they did not hold any sense of
being a decision maker with regards to dealing with sexuality issues and believed their role
gave them little autonomy in the support they offered.
‘but where I’m not in that position I don’t know, whoever’s on shift I’ll go to that
person, the senior, the management, shift leader.... whoever’s leading the shift that’s
how I’d deal with it.’ (Fran)
‘I think I’d, if I’d had a concern then I think I’d want (manager) to do it’ (Sam)
Participants also voiced this in describing how they would ensure they always made team
decisions.
Participants expressed that there were clear boundaries to their role because they saw
many aspects of support to be outside their skill set such as physical, emotional and
psychological needs.
‘I’d rather someone else who’s a professional, able to give that sort of
advice[contraception]’ (Jo)
‘It’s a situation here where a man wants to buy a dress but a psychologist will be the
best person to tell why this person wants a dress, I think he or she has to be involved’
(Nic)
Viewing tasks as outside of their skill set or control was interpreted as support worker
holding a position where they were unable to exercise an active role in supporting sexuality.
33
It could be considered that this may be desirable given the difficulties supporting sexuality
entails.
Discussion
Summary of Findings
This research employed a qualitative approach to explore support workers’
understanding of their role in supporting sexuality.
This analysis suggested support workers primarily conceptualised their role as A
Juggling Act between facilitation and protection. Support workers were aware that there was
no simple set of rules to direct their actions and reported drawing on a range of influences to
guide them in understanding their role. The diversity and changebility of influences was
interpreted as There is No Rulebook, which meant engaging in a role supporting sexuality
was viewed as difficult. As a result of trying to manage the complexity of sexuality issues
without simple rules, some support workers instead believed that they did not have a
significant role in supporting sexuality. This stance, Keeping Sexuality at Arm’s Length,
unconsciously distanced them from having an active role in supporting sexuality.
Exploration of Themes
In understanding the way in which the three super ordinate themes emerging from this
study contribute to our understanding of how support workers view their role in supporting
sexuality, it is clear that the theme ‘A Juggling Act’ is consistent with previous research. The
roles of facilitator and protector have been found in relation generic support needs (Windley
& Chapman, 2010) and sexuality specific support needs (Rushbrooke et al., 2014). This study
suggested that the roles of facilitator and protector seemed to be underpinned by a view that
people with a learning disability are inherently different due to their disabilities. It was
believed additional support to access normalised life experiences was necessary, meaning
support workers were required to offer facilitation to minimise ‘difference’. Alongside this
34
was the understanding that people with learning disabilities are vulnerable and support
workers seem to accept this aspect of ‘difference’ and provide protection. In this analysis it
was acknowledged that attempting to hold both of these roles can cause a fundamental
tension as the underpinning philosophies of each position can appear oppositional; on one
hand trying to minimise difference and the other having to focus on difference. In negotiating
this tension, A Juggling Act occurs where support workers attempt to hold both positions with
difficulty. The idea of negotiating difference is echoed throughout the qualitative literature
and is summarised in Rushbrooke et al’s (2014) meta synthesis by the theme ‘same but
different’ which represents that caregivers see sexuality as ‘natural’ but offering support is
complicated by a person having a learning disability and needing additional protection.
There is No Rulebook further expressed the difficulties support workers experienced in their
role. It is well established that there is a lack of training and policy to guide support workers
in their role (Rushbrooke et al., 2014). It is likely that this contributed to ‘There is No
Rulebook’ and support workers drawing on personal beliefs and values pertaining to sexuality
which could negatively impact the ways they offer support
It was evident across the themes that support workers held a number of positive and
negative association to their role supporting sexuality. On one hand, they appeared to hold
strong positive associations to supporting sexuality as they articulated wanting to embrace the
values and practices of the normalisation discourse, offer support and advocate the rights of
people with learning disabilities. On the other hand, they expressed negative associations to
their role supporting sexuality, conveying it was difficult, caused uncertainty, could place
people at risk and caused their own personal moral beliefs to be compromised. The presence
of these positive and negative associations may have produced an experience of ambivalence
in relation to the role of supporting sexuality.
35
Ambivalence can be described as the simultaneous existence of strong positive and negative
evaluations about the same attitude object (Thompson et al., 1995).In lay terms, ambivalent
attitudes can be thought of as holding two opposing views that result in a person ‘sitting on
the fence’. When put into a position where a decision or action is required, these conflicting
associations are activated and can cause psychological discomfort, termed ‘felt ambivalence’
(de Liver et al., 2007; Jamieson, 1993; van Harreveld et al., 2009). This is characterised by
guilt and uncertainty as a person endeavours to reconcile their conflicting associations in
order to make the ‘best’ decision. For support workers, ‘felt ambivalence’ may occur when
they have to exercise their role and make decisions or offer support regarding sexuality. In
many circumstances relating to sexuality, support workers may feel immense pressure,
uncertainty and guilt about making the ‘right decision’. Support workers in this study
described Holding the Helicopter View which demonstrated their desire to be in a position
where they can make wise informed decisions.
van Harreveld et al. (2009) proposed the Model Of Ambivalence Induced Discomfort
(MAID) which summarises the processes and strategies for managing the discomfort that
arises from ‘felt ambivalence’. They explained that where the consequence of a decision is
uncertain, anticipatory regret and uncertainty are aroused. For support workers, when
responding to a sexuality issue they may anticipate having to reconcile advocating protection
over their values of normalisation and facilitation. This is likely to provoke guilt and regret at
the prospect of making decisions that may deny opportunities to people with learning
disabilities.
Van Harreveld et al. (2009) outline two approaches to manage this discomfort. High
effort processing involves using cognitive resources and conscious effort to resolve
ambivalence and ensure the best decision is made. This targets the source of discomfort by
addressing the conflicting beliefs about their role. In contrast, low effort processing centres
36
on the relieving the discomfort of the ambivalence rather than resolving it. This results in
avoidance of decision making, procrastination (Sirois 2004) and denial of responsibility
(Luce et al. 1997).
Exploring the themes in this paper, it could be argued there is evidence of support
workers engaging in low effort processing regarding their role supporting sexuality. The
theme ‘Keeping Sexuality at Arm’s Length’ represented support workers holding an
understanding of their role where they avoided and denied a role in supporting sexuality.
Support for this interpretation was gained from most participants having expressed sexuality
issues as occurring infrequently. Sexuality is a wide multidimensional concept that can
include gender roles, body image and social relationships (Murphy & Elias, 2006; WHO,
2006) and is therefore expressed in a variety of ways. The absence of ‘seeing’ sexuality,
alongside the frequent use of minimising language, implied a denial of sexuality being present or
important and thus denial of a role in supporting it. The challenges are further exacerbated as the
support workers find it difficult to embrace the power embedded within their role as they have a
tendency to avoid their responsibilities which ultimately results in limiting both their and their clients
self efficacy There was also evidence of support workers deferring responsibility as they
described having to seek authority from their managers or check care plans.
37
Figure 2: Diagrammatic explanation of the application of the MAID model (Van Harreveld et al. (2009)
38
In summary, it could be argued that the themes emerging from the data suggested
support workers experienced ambivalence towards supporting sexuality, which directly
affected the way they understood and engaged with their role supporting sexuality. When
needing to support a sexuality issues, they experienced a conflict between the negative and
positive associations to their role, which gave rise to ambivalence. As a result of their
ambivalence, and the discomfort it caused, they employed low effort processing which
resulted in them being dismissive of their responsibility and avoidant of a role supporting
sexuality.
The unintentional consequence of this may be the censorship of sexuality for people
with a learning disability, which perpetuates historical beliefs that are not in keeping with the
normalisation agenda. It is important to note that this is based on the interpretation of a small
scale study and further research, as detailed below, will be needed to explore this suggestion.
Implications and Recommendations
For Service Users
The message and care people with learning disabilities gain from their support
workers is crucial. Sexuality, as understood from a social constructionist perspective, is
created and learnt from the social environment (Gangon, 1977; Weeks, 1989). From the
actions and reactions of others we develop an understanding of the social and emotional
components of sexuality (e.g. what is attractive to others, appropriateness of behaviour etc).
Therefore our view of ourselves can be directly influenced by those around us. For those
without a learning disability, knowledge of sex and sexuality is driven by peer interactions
(Elley, 2008). People with learning disabilities rarely have opportunities for this type of
interaction and learning experience (Emerson & McVilley, 2004) and are instead reliant on
their family members who can be negative and over protective (Smyth & Bell, 2006). With
limited social networks and family rarely providing active support for sexuality needs, it
39
often falls to their support workers. Support workers holding an understanding that sexuality
plays an insignificant part in their role is likely to perpetuate the limited opportunities people
with learning disabilities have to express their sexuality (Oliver et al., 2002).
If support workers believe they do not have an important role in sexuality and
distance themselves from it then people with learning disabilities will get the impression that
sexuality is not for them. This is an impression and understanding people with learning
disabilities have conveyed in the literature (Fitzgerald & Withers 2013). This could lead to a
self-fulfilling prophecy where they internalise this belief and restrict their expressions of their
sexuality. This pattern has been reported in relation to autonomy, where being perceived by
support workers of incapable of autonomy, people have been denied the opportunities to
express it and so become less autonomous (Snyder & Mitchell, 2006). In this study, support
workers in the same service, supporting the same service users, had opposing views on the
frequency that sexuality issues arose. The contrast between these two participants adds
weight to the interpretation that support workers can choose whether to notice their clients
sexuality. Furthermore, it could demonstrate the impact support workers have on service
user’s ability to express sexuality needs. People with learning disabilities are reported to not
express choices to their support worker when they feel their choice would not be supported
(Healy et al., 2009). Possibly these particular service users’ chose not to express sexuality
needs to certain staff as they sensed that their sexuality was viewed as unimportant and
instead expressed sexuality needs to staff who they felt would recognise and value their
needs.
This interactional pattern, where people with learning disabilities feel unable raise
sexuality issues and support workers are not proactive at addressing them, could ultimately
put people with learning disabilities at risk. People with learning disabilities are
overrepresented as both victims and perpetrators of sexual offences (Simpson & Hogg, 2001;
40
Lambrick & Glaser, 2004); not being able to address sexuality as a topic could further
increase this risk.
For Staff and Services
Role ambiguity is known to be a significant factor in support workers experience of
work stress (Hatton & Emerson, 1995; Hatton et al., 1999). Identifying ambivalent attitudes
and the theme of There’s No Rulebook, suggested that support workers experienced
uncertainty and difficulty making sense of a role supporting sexuality.
A training deficit in sexuality and learning disabilities has consistently been reported
(Futcher, 2011; McConkey & Ryan, 2001) and many researchers recommend training for
sexuality issues (Christian et al., 2001; Yool et al., 2003). This study would reiterate this
recommendation as it has highlighted the complexity of supporting sexuality. It is likely that
sexuality will remain a complex support need for which there will never be a rulebook.
Therefore training may need to emphasise and focus on the alleviation of the fears, anxieties
and taboos about the topic rather than focusing on ‘how to’ support sexuality. Hudson and
Jacot (1991) question whether sexuality is a useful construct as it encompasses too many
concepts making it difficult to understand. Training that deconstructed sexuality into smaller
component parts may improve the accessibility of both the training and practice of supporting
sexuality. The MAID model proposes high effort processing requires cognitive resources and
support to resolve ambivalence. Reflective practice sessions may help facilitate this level of
processing and allow support workers time and space to explore their ambivalent attitudes
and the challenges they face understanding and supporting sexuality.
For Future Research
This is small scale study representing the views of one small group and further
research with a wider sample would be required to draw firmer conclusions. Accessing
managers’ understanding of how sexuality needs are being supported would be of interest.
41
Despite research literature suggesting that support workers have a significant role in
supporting sexuality (Brantlinger,1983; Brown & Pirtle, 2008; Swango Wilson, 2010)
support workers in this study expressed the view that they lacked autonomy deferring
responsibility for initiating and delivering support and decisions around sexuality issues to
service managers. This was understood as a result of support workers’ ambivalence driving
them to avoid confronting sexuality issues. However it would be important to understand how
management perceive both support workers role and their role to explore whether ‘Keeping
Sexuality At Arm’s Length’ is reflected across all structures of the organisation.
Evaluation
Despite the small scale of this study it has revealed findings that are both consistent
with our knowledge of sexuality and learning disabilities and contribute to it. It showed that
sexuality remains a complex and difficult support need to engage with. Support workers
reported that their role was complicated due to an explicit desire to adhere to normalisation
discourses which was entangled with dismissive discourse that protected them from the
difficulties of the role.
Though IPA research does not endeavour to be representative or to offer generalisable
findings it is important to note that this was a self-selected sample. This resulted in a female
gender bias. Recruitment criteria were relaxed in order to obtain a sufficient number of
participants. As participants were volunteers it could be considered that those who
participated were reasonably comfortable and willing to engage in discussions about
sexuality.
Being a novice IPA researcher may have affected some quality aspects during
interviewing and data analysis. For example, heavier reliance on the interview schedule. In
order to minimise this, a practice interview was completed and audio recorded in order to
enable research supervisors to provide feedback. To support the credibility of this research
42
Yardley’s (2000) quality criteria were incorporated into all stages of the research process. For
example, coding and themes were discussed and reviewed with supervisors and a reflective
research log was kept to enable me to consider the influences on my interpretations and pay
close attention to the processes. (Appendix K&L)
Conclusion
This study explored how support workers understood their role in supporting the
sexuality needs of people with learning disabilities. Primarily, support workers viewed their
role as A Juggling Act between facilitation and protection. They recognised There is No
Rulebook making their role both complex and uncertain. They demonstrated ambivalence
about their role supporting sexuality issues which resulted in them Keeping Sexuality at
Arm’s Length; distancing themselves from supporting sexuality by ascribing to an
understanding that they had a limited or insignificant role in supporting sexuality.
Conceptualsing their role in this framework protected them from the practical and emotional
difficulties such as uncertainty, and guilt that having an active role may encounter.
The impact of support workers conceptualising their role in this framweork was
considered to inadvertently reinforce the negative and limiting discourses people with
learning disabilties receive about their sexuality. This study reiterated the need for support
workers to have access to sexuality training and reflective practice that explores ambivalent
attitudes and aims to make the concept of sexuality more accessible, removing some of the
associated fear and anxiety.
43
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Major Research Project Empirical Paper Appendices
51
List of Appendices
Appendix A: Guidelines for Authors...............................................................Page 53
Appendix B: Table of Studies Included In Literature Review.........................Page 58
Appendix C: Table of Studies concluding ‘Positive’ Attitudes......................Page 59
Appendix D: Choice of Methodology..............................................................Page 60
Appendix E: Interview Schedule.....................................................................Page 61
Appendix F: Demographic Questionnaire.......................................................Page 63
Appendix G: Recruitment Email......................................................................Page 65
Appendix H: Information Sheet.......................................................................Page 66
Appendix I: Consent Form...............................................................................Page 68
Appendix J: Ethical Considerations and Approval..........................................Page 69
Appendix K: Quality and Validity...................................................................Page 71
Appendix L: Reflections and Reflective Research Log...................................Page 73
Appendix M: Example of Transcript with Coding..........................................Page 77
Appendix N: Initial Themes for each Participant............................................Page 79
Appendix O: Grouping Initial and Final Themes............................................Page 81
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Appendix A: Guidelines for Authors1. GENERAL
The Journal of Applied Research in Intellectual Disabilities is an international, peer-reviewed journal which draws together findings derived from
original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for
people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is
aimed at an international, multi-disciplinary readership.
The topics it covers include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported
employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and
service provision. Theoretical papers are also considered provided the implications for therapeutic action or enhancing quality of life are clear.
Both quantitative and qualitative methodologies are welcomed. All original and review articles continue to undergo a rigorous, peer-refereeing
process.
Please read the instructions below carefully for details on submission of manuscripts, the journal's requirements and standards as well as
information concerning the procedure after a manuscript has been accepted for publication. Authors are encouraged to
visit http://authorservices.wiley.com/bauthor/ for further information on the preparation and submission of articles.
All manuscripts must be submitted solely to this journal and not published, in press, or submitted elsewhere.
2. ETHICAL GUIDELINES
Acceptance of papers is based on the understanding that authors have treated research participants with respect and dignity throughout. Please
see Section 2.2 below.
2.1 Authorship and Acknowledgements
Authorship: Authors submitting a paper do so on the understanding that the manuscript has been read and approved by all authors and that all
authors agree to the submission of the manuscript to the journal. ALL named authors must have made an active contribution to the conception
and design and/or analysis and interpretation of the data and/or the drafting of the paper and ALL authors must have critically reviewed its content
and have approved the final version submitted for publication. Participation solely in the acquisition of funding or the collection of data does not
justify authorship.
It is a requirement that all authors have been accredited as appropriate under submission of the manuscript. Contributors who do not qualify as
authors should be mentioned under Acknowledgements.
Acknowledgements: Under Acknowledgements please specify contributors to the article other than the authors accredited. Please also include
specifications of the source of funding for the study and any potential conflict of interest if appropriate. Suppliers of materials should be named
and their location (town, state/county, country) included.
2.2 Ethical Approvals
Research involving human participants will only be pubished if such research has been conducted in full accordance with ethical principles,
including the World Medical Association Declaration of Helsinki (version, 2002 www.wma.net) and the additional requirements, if any, of the
country where the research has been carried out. Manuscripts must be accompanied by a statement that the research was undertaken with the
understanding and written consent of each participant (or the participant's representative, if they lack capacity), and according to the above
mentioned principles. A statement regarding the fact that the study has been independently reviewed and approved by an ethical board should
also be included.
All studies using human participants should include an explicit statement in the Material and Methods section identifying the review and ethics
committee approval for each study, if applicable. Editors reserve the right to reject papers if there is doubt as to whether appropriate procedures
have been used.
Ethics of investigation: Papers not in agreement with the guidelines of the Helsinki Declaration as revised in 1975 will not be accepted for
publication.
2.3 Clinical Trials
Clinical trials should be reported using the CONSORT guidelines available at www.consort-statement.org. A CONSORT checklist should also be
included in the submission material (www.consort-statement.org).
53
The Journal of Applied Research in Intellectual Disabilities encourages authors submitting manuscripts reporting from a clinical trial to register the
trials in any of the following free, public trials registries: www.clinicaltrials.org, www.isrctn.org. The clinical trial registration number and name of
the trial register will then be published with the paper.
2.4 Conflict of Interest and Source of Funding
Conflict of Interest: Authors are required to disclose any possible conflict of interest. These include financial (for example patent ownership,
stock ownership, consultancies, speaker's fee). Author's conflict of interest (or information specifying the absence of conflict of interest) will be
published under a separate heading.
The Journal of Applied Research in Intellectual Disabilities requires that sources of institutional, private and corporate financial support for the
work within the manuscript must be fully acknowledged, and any potential conflict of interest noted. As of 1st March 2007, this information is a
requirement for all manuscripts submitted to the journal and will be published in a highlighted box on the title page of the article. Please include
this information under the separate headings of 'Source of Funding' and 'Conflict of Interest' at the end of the manuscript.
If the author does not include a conflict of interest statement in the manuscript, then the following statement will be included by default: 'No conflict
of interest has been deFrand'.
Source of Funding: Authors are required to specify the source of funding for their research when submitting a paper. Suppliers of materials
should be named and their location (town, state/county, country) included. The information will be disclosed in the published article.
2.5 Permissions
If all or parts of previously published illustrations are used, permission must be obtained from the copyright holder concerned. It is the author's
responsibility to obtain these in writing and provide copies to the Publishers.
2.6 Copyright Assignment
If your paper is accepted, the author identified as the formal corresponding author for the paper will receive an email prompting them to login into
Author Services; where via the Wiley Author Licensing Service (WALS) they will be able to complete the license agreement on behalf of all
authors on the paper.
For authors signing the copyright transfer agreement
If the OnlineOpen option is not selected the corresponding author will be presented with the copyright transfer agreement (CTA) to sign. The
terms and conditions of the CTA can be previewed in the samples associated with the Copyright FAQs below:
CTA Terms and Conditions http://authorservices.wiley.com/bauthor/faqs_copyright.asp
3. ONLINEOPEN
For authors choosing OnlineOpen
If the OnlineOpen option is selected the corresponding author will have a choice of the following Creative Commons License Open Access
Agreements (OAA):
Creative Commons Attribution License OAA
Creative Commons Attribution Non-Commercial License OAA
Creative Commons Attribution Non-Commercial -NoDerivs License OAA
To preview the terms and conditions of these open access agreements please visit the Copyright FAQs hosted on Wiley Author
Services http://authorservices.wiley.com/bauthor/faqs_copyright.aspand
visit http://www.wileyopenaccess.com/details/content/12f25db4c87/Copyright--License.html.
If you select the OnlineOpen option and your research is funded by The Wellcome Trust and members of the Research Councils UK (RCUK) you
will be given the opportunity to publish your article under a CC-BY license supporting you in complying with Wellcome Trust and Research
Councils UK requirements. For more information on this policy and the Journal’s compliant self-archiving policy please
visit: http://www.wiley.com/go/funderstatement.
4. SUBMISSION OF MANUSCRIPTS
Submissions are now made online using ScholarOne Manuscripts (formerly Manuscript Central). To submit to the journal go to http://
mc.manuscriptcentral.com/jarid. If this is the first time you have used the system you will be asked to register by clicking on ‘create an account’.
54
Full instructions on making your submission are provided. You should receive an acknowledgement within a few minutes. Thereafter, the system
will keep you informed of the process of your submission through refereeing, any revisions that are required and a final decision.
4.1 Manuscript Files Accepted
Manuscripts should be uploaded as Word (.doc) or Rich Text Format (.rft) files (not write-protected) plus separate figure files. GIF, JPEG, PICT or
Bitmap files are acceptable for submission, but only high-resolution TIF or EPS files are suitable for printing.
To allow double-blinded review, please upload your manuscript and title page as separate files.
Please upload:
1. Your manuscript without title page under the file designation 'main document'.
2. Figure files under the file designation 'figures'.
3. Title page which should include title, authors (including corresponding author contact details), acknowledgements and conflict of interest
statement where applicable, should be uploaded under the file designation 'title page'.
All documents uploaded under the file designation 'title page' will not be viewable in the HTML and PDF format you are asked to review at the end
of the submission process. The files viewable in the HTML and PDF format are the files available to the reviewer in the review process.
Please note that any manuscripts uploaded as Word 2007 (.docx) will be automatically rejected. Please save any .docx files as .doc before
uploading.
4.2 Blinded Review
All articles submitted to the journal are assessed by at least two anonymous reviewers with expertise in that field. The Editors reserve the right to
edit any contribution to ensure that it conforms with the requirements of the journal.
5. MANUSCRIPT TYPES ACCEPTED
Original Articles, Review Articles, Brief Reports, Book Reviews and Letters to the Editor are accepted. Theoretical Papers are also
considered provided the implications for therapeutic action or enhancing quality of life are clear. Both quantitative and qualitative methodologies
are welcomed. Articles are accepted for publication only at the discretion of the Editor. Articles should not exceed 7000 words. Brief Reports
should not normally exceed 2000 words. Submissions for the Letters to the Editor section should be no more than 750 words in length.
6. MANUSCRIPT FORMAT AND STRUCTURE
6.1 Format
Language: The language of publication is English. Authors for whom English is a second language must have their manuscript professionally
edited by an English speaking person before submission to make sure the English is of high quality. It is preferred that manuscripts are
professionally edited. A list of independent suppliers of editing services can be found
athttp://authorservices.wiley.com/bauthor/english_language.asp. All services are paid for and arranged by the author, and use of one of these
services does not guarantee acceptance or preference for publication.
6.2 Structure
All manuscripts submitted to the Journal of Applied Research in Intellectual Disabilities should include:
Cover Page: A cover page should contain only the title, thereby facilitating anonymous reviewing. The authors' details should be supplied on a
separate page and the author for correspondence should be identified clearly, along with full contact details, including e-mail address.
Running Title: A short title of not more than fifty characters, including spaces, should be provided.
Keywords: Up to six key words to aid indexing should also be provided.
Main Text: All papers should have a structured abstract (maximum 150 words) as follows: Background, Method, Results, and Conclusions. The
abstract should provide an outline of the research questions, the design, essential findings and main conclusions of the study. Authors should
make use of headings within the main paper as follows: Introduction, Method, Results and Discussion. Subheadings can be used as appropriate.
All authors must clearly state their research questions, aims or hypotheses clearly at the end of the Introduction. Figures and Tables should be
submitted as a separate file.
Style: Manuscripts should be formatted with a wide margin and double spaced. Include all parts of the text of the paper in a single file, but do not
embed figures. Please note the following points which will help us to process your manuscript successfully:
-Include all figure legends, and tables with their legends if available.
55
-Do not use the carriage return (enter) at the end of lines within a paragraph.
-Turn the hyphenation option off.
-In the cover email, specify any special characters used to represent non-keyboard characters.
-Take care not to use l (ell) for 1 (one), O (capital o) for 0 (zero) or ß (German esszett) for (beta).
-Use a tab, not spaces, to separate data points in tables.
-If you use a table editor function, ensure that each data point is contained within a unique cell, i.e. do not use carriage returns within cells.
Spelling should conform to The Concise Oxford Dictionary of Current English and units of measurements, symbols and abbreviations with those
in Units, Symbols and Abbreviations (1977) published and supplied by the Royal Society of Medicine, 1 Wimpole Street, London W1M 8AE. This
specifies the use of S.I. units.
6.3 References
The reference list should be in alphabetic order thus:
-Emerson E. (1995) Challenging Behaviour: Analysis and Intervention in People with Learning Disabilities. Cambridge University Press,
Cambridge.
-McGill P. & Toogood A. (1993) Organising community placements. In: Severe Learning Disabilities and Challenging Behaviours: Designing High
Quality Services (Eds E. Emerson, P. McGill & J. Mansell), pp. 232-259. Chapman and Hall, London.
-Qureshi H. & Alborz A. (1992) Epidemiology of challenging behaviour. Mental Handicap Research 5, 130-145
Journal titles should be in full. References in text with more than two authors should be abbreviated to (Brown et al. 1977). Authors are
responsible for the accuracy of their references.
We recommend the use of a tool such as EndNote or Reference Manager for reference management and formatting.
EndNote reference styles can be searched for here:
http://www.endnote.com/support/enstyles.asp
Reference Manager reference styles can be searched for here:
http://www.refman.com/support/rmstyles.asp
The Editor and Publisher recommend that citation of online published papers and other material should be done via a DOI (digital object
identifier), which all reputable online published material should have - see www.doi.org/ for more information. If an author cites anything which
does not have a DOI they run the risk of the cited material not being traceable.
6.4 Tables, Figures and Figure Legends
Tables should include only essential data. Each table must be typewritten on a separate sheet and should be numbered consecutively with Arabic
numerals, e.g. Table 1, and given a short caption.
Figures should be referred to in the text as Figures using Arabic numbers, e.g. Fig.1, Fig.2 etc, in order of appearance. Figures should be clearly
labelled with the name of the first author, and the appropriate number. Each figure should have a separate legend; these should be grouped on a
separate page at the end of the manuscript. All symbols and abbreviations should be clearly explained. In the full-text online edition of the journal,
figure legends may be truncated in abbreviated links to the full screen version. Therefore, the first 100 characters of any legend should inform the
reader of key aspects of the figure.
Preparation of Electronic Figures for Publication
Although low quality images are adequate for review purposes, print publication requires high quality images to prevent the final product being
blurred or fuzzy. Submit EPS (line art) or TIFF (halftone/photographs) files only. MS PowerPoint and Word Graphics are unsuitable for printed
pictures. Do not use pixel-oriented programmes. Scans (TIFF only) should have a resolution of at least 300 dpi (halftone) or 600 to 1200 dpi (line
drawings) in relation to the reproduction size. Please submit the data for figures in black and white or submit a Colour Work Agreement Form.
EPS files should be saved with fonts embedded (and with a TIFF preview if possible).
Further information can be obtained at Wiley-Blackwell's guidelines for figures:http://authorservices.wiley.com/bauthor/illustration.asp.
Check your electronic artwork before submitting it:http://authorservices.wiley.com/bauthor/eachecklist.asp.
Permissions: If all or parts of previously published illustrations are used, permission must be obtained from the copyright holder concerned. It is
the author's responsibility to obtain these in writing and provide copies to the Publisher.
56
Colour Charges: It is the policy of the Journal of Applied Research in Intellectual Disabilities for authors to pay the full cost for the reproduction of
their colour artworkhttp://www.blackwellpublishing.com/pdf/SN_Sub2000_X_CoW.pdf"> Colour Work Agreement Form
7. AFTER ACCEPTANCE
Upon acceptance of a paper for publication, the manuscript will be forwarded to the Production Editor who is responsible for the production of the
journal.
7.1 Proof Corrections
The corresponding author will receive an e-mail alert containing a link to a website. A working e-mail address must therefore be provided for the
corresponding author. The proof can be downloaded as a PDF file from this site.
Acrobat Reader will be required in order to read this file. This software can be downloaded (free of charge) from the following website:
www.adobe.com/products/acrobat/readstep2.html
This will enable the file to be opened, read on screen, and printed out in order for any corrections to be added. Further instructions will be sent
with the proof. Proofs will be posted if no e-mail address is available; in your absence, please arrange for a colleague to access your e-mail to
retrieve the proofs.
Proofs must be returned to the Production Editor within 3 days of receipt.
As changes to proofs are costly, we ask that you only correct typesetting errors. Excessive changes made by the author in the proofs, excluding
typesetting errors, will be charged separately. Other than in exceptional circumstances, all illustrations are retained by the Publisher. Please note
that the author is responsible for all statements made in their work, including changes made by the copy editor.
7.2 Early View (Publication Prior to Print)
The Journal of Applied Research in Intellectual Disabilities is covered by Wiley-Blackwell's Early View service. Early View articles are complete
full-text articles published online in advance of their publication in a printed issue. Early View articles are complete and final. They have been fully
reviewed, revised and edited for publication, and the authors' final corrections have been incorporated. Because they are in final form, no
changes can be made after online publication. The nature of Early View articles means that they do not yet have a volume, issue or page number,
so Early View articles cannot be cited in the traditional way. They are therefore given a DOI (digital object identifier) which allows the article to be
cited and tracked before it is allocated to an issue. After print publication, the DOI remains valid and can continue to be used to cite and access
the article.
7.3 Author Services
Online production tracking is available for your article through Wiley-Blackwell's Author Services. Author Services enables authors to track their
article - once it has been accepted - through the production process to publication online and in print. Authors can check
the status of their articles online and choose to receive automated e-mails at key stages of production. The author will receive an e-mail with a
unique link that enables them to register and have their article automatically added to the system. Please ensure that a complete e-mail address
is provided when submitting the manuscript. Visit http://authorservices.wiley.com/bauthor/ for more details on online production tracking and for a
wealth of resources include FAQs and tips on article preparation, submission and more.
For more substantial information on the services provided for authors, please see Wiley-Blackwell's Author Services.
7.4 Author Material Archive Policy
Please note that unless specifically requested, Wiley-Blackwell will dispose of all hardcopy or electronic material submitted two issues after
publication. If you require the return of any material submitted, please inform the editorial office or Production Editor as soon as possible.
7.5 Offprints and Extra Copies
Free access to the final PDF offprint of the article will be available via Author Services only. Additional paper offprints may be ordered online.
Please click on the following link, fill in the necessary details and ensure that you type information in all of the required fields:
http://offprint.cosprinters.com/blackwell
57
Appendix B: Table of Studies Included In Literature Review
Key: SMRAI = Sexuality and Mental Retardation Attitudes Inventor; SAQ = Sexual Attitudes Questionnaire; ATS - Attitudes to Sexuality Scale; POS - Perceptions of Sexuality Scale; ASQ-ID = Attitudes to Sexuality questionnaire – Intellectual Disability; ASQ-GP = Attitudes to Sexuality Questionnaire – General Population; GSAQ-ID Greek Sexuality Attitude Questionnaire – Intellectual Disability
58
First Author (Year)
Sample Design Measure
Bazzo (2007) Care Staff (N=216) Quantitative SMRAIFranco (2012)
Students (N=454) Quantitative Developed Likert scale questionnaire
Grieve (2009)
Care Staff (N=188) Quantitative SAQ
Cuskelly (2004)
Care Staff (N=125), Parents (N=43)
Quantitative Developed Likert scale questionnaire
Saxe (2013) Care Staff (N=25) Quantitative ATS, POSRyan (2000) Care Staff (N=150) Quantitative Developed Likert scale questionnaireCuskelly (2007)
General Public (N=261)
Quantitative ASQ-ID, ASQ-GP
Gilmore (2010)
Staff (N=169), Leisure Staff (N=50)
Quantitative ASQ-ID, ASQ-GP
Meaney-Tavares (2012)
Care Staff (N=66) Quantitative ASQ-ID, ASQ-GP
Katz (2000) Students (N=135) Quantitative SMRAI, Developed Likert scale questionnaire, California F scale
Swango Wilson (2008)
Care Staff (N=85) Quantitative POS, demographic questionnaire
Parchomiuk (2012)
MDT Staff (N=98) Quantitative Developed Likert scale questionnaire
Parchomiuk (2013)
Students (N=181) Quantitative Developed Likert scale questionnaire
Karellou (2003)
General Public (N= 189)
Quantitative GSAQ-ID
Wilkenfield (2011)
Teachers/Educators (N=10)
Qualitative Structured Interview
Yool (2003) Staff (N=4) Qualitative Semi-structured InterviewYoung (2012)
Care Staff (N=10) Qualitative Semi-structured Interview
Christian (2001)
Care Staff (N=43) Mixed Developed Likert scale questionnaire, Case scenarios
Evans (2009) Staff (N=153)Family Carers (N=153)
Mixed Developed Likert scale questionnaire, Case scenarios
Brown (2008)
Care Staff (N=40) Mixed Q sort with a concourse of 36 items
Appendix C: Table of Studies concluding ‘Positive’ Attitudes
First Author (Year)
Sample Measure Conclusion
Bazzo (2007) Care Staff (N=216) SMRAI ‘Moderately liberal attitudes’Franco (2012) Students (N=454) Developed Likert scale
questionnaire ‘Positive attitudes towards sexuality and affectivity’
Cuskelly (2004)
Care Staff (N=125), Parents (N=43)
Developed Likert scale questionnaire
‘Generally positive’
Saxe (2013) Care Staff (N=25) ATS, POS ‘Moderately accepting’ attitudes. ‘Liberal perceptions of sexuality’
Ryan (2000) Care Staff (N=150) Developed Likert scale questionnaire
Supportive positive attitudes
Cuskelly (2007)
General Public (N=261)
ASQ-ID, ASQ-GP ‘Generally quite positive’
Gilmore (2010)
Staff (N=169), Leisure Staff (N=50)
ASQ-ID, ASQ-GP ‘Generally quite positive’
Meaney-Tavares (2012)
Care Staff (N=66) ASQ-ID, ASQ-GP ‘Quite positive’
Parchomiuk (2013)
Students (N=181) Developed Likert scale questionnaire
‘Positive values given to sexuality’
Wilkenfield (2011)
Teachers/Educators (N=10)
Structured Interview ‘Positive view towards sexuality’
Yool (2003) Staff (N=4) Semi-structured Interview ‘Generally liberal attitudes’Christian (2001)
Care Staff (N=43) Developed Likert scale questionnaire, Case scenarios
‘Supporting attitudes’
Evans (2009) Staff (N=153)Family Carers (N=153)
Developed Likert scale questionnaire, Case scenarios
Liberal attitudes
Brown (2008) Care Staff (N=40) Q sort with a concourse of 36 items
Overall positive
Key: ATS - Attitudes to Sexuality Scale; POS - Perceptions of Sexuality Scale; ASQ-ID = Attitudes to Sexuality questionnaire – Intellectual Disability; ASQ-GP = Attitudes to Sexuality Questionnaire – General Population
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Appendix D: Choice of Methodology
IPA was considered the most appropriate methodology for investigating this topic. The
following methodologies were considered.
Thematic Analysis
Although Thematic Analysis could fit with the aim of the research and offer an understanding
of participants’ viewpoint and perspective, IPA was considered a better methodology as focus
on the individual and patterns across participants allowing for discussion of convergence and
divergence.
Grounded Theory
Grounded theory focuses on developing theories and models. This requires ongoing data
collection until no further new information is found (Glasser & Straus, 1967). It was decided
the scale of this research project did not allow for undefined timescales.
Discourse Analysis
Although discourse analysis would fit well with the aims of this project it was considered to
not be suitable for the timescales and scope of this project. Ideally, discourse analysis would
require naturally occurring data which would be difficult to source. If an interview format
where employed for data collection, then both interviewee and interviewer data would be
analysed. This was considered to add time and complexity for a novice researcher.
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Appendix E: Interview Schedule
1. Tell me what the word ‘sexuality’ means to you?
2. Can you tell me about your role in supporting the sexuality of people with learning disabilities?
Prompts:- What do you do to support people?- What things do you think are important/not important?- Are there any parts of your role you find difficult/easy?
3. How would I see this (part of your role) in your everyday practice?Prompts:
- What things do you think/say/do (with a person’s sexuality in mind)?
4. How do you feel about your role in supporting service users’ sexuality/sexual needs?Prompts:
- What parts of your role do you like/not like
The following questions are called vignettes. I will describe a scenario to you and I want to talk with you about how as a support worker in this situation you might think and respond to the situation
5. Vignette 1: Sandra is 45. She has a mild learning disability and lives in supported living accommodation. Sandra has not had a relationship for over ten years. Sandra regularly uses online chat rooms. She has been talking to Jim online for 2 months. They have been on several dates and their relationship is going well. Jim has visited Sandra at home and you have met him on these occasions. Sandra has arranged to meet Jim next weekend. Sandra asks if Jim can stay the night.
Prompts: - What would you think?- What would you do?- What would be your role here?- What would be your priority?- What would your concerns be?- What would help you / hinder you in responding to this situation?
6. Vignette 2: James is 18. He has a moderate learning disability and lives in supported living accommodation. He regularly uses the internet and has his own ipad. Recently he watched porn on the internet whilst at his friend’s house. He enjoyed watching it and has tried to access it when at home in his bedroom. However the internet has security installed that prevents access to pornographic websites. James asks you to help him find out how he can access internet porn at home on his iPad
Prompts: - What would you think?
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- What would you do?- What would be your role here?- What would be your priority?- What would your concerns be?- What would help you / hinder you in responding to this situation?
7. Vignette 3: Peter is 56. He has a mild learning disability and lives in supported living accommodation. He has been in a relationship with John for 6 months. He wants to arrange a weekend away but is unable to use the internet due to difficulties with reading and writing. Peter asks you to book a double room in a hotel for their weekend away.
Prompts: - What would you think?- What would you do?- What would be your role here?- What would be your priority?- What would your concerns be?- What would help you / hinder you in responding to this situation?
8. Vignette 4: Steve is 22. He has a moderate learning disability and lives in supported living accommodation. He requires support with many aspects of daily living including shopping. He often talks about liking girls’ clothing and always compliments female staff on their appearance. Steve asks if he can buy a dress to wear next time you go shopping.
Prompts: - What would you think?- What would you do?- What would be your role here?- What would be your priority?- What would your concerns be?- What would help you / hinder you in responding to this situation?
9. Have you had any experiences like the ones we have talked about today?- Could you tell me about these?
10. At the beginning I asked you how you understand your role in supporting the sexuality/sexual needs of people with learning disabilities; is there anything you would like to add about your role?
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Appendix F: Demographic Questionnaire
Sex: MaleFemaleRather not say
Ethnicity:White:
White BritishWhite IrishAny other White Background (please specify) ________________________
Black or Black British:AfricanCaribbeanOther Black background (please specify) _________________________
Asian or Asian British:IndianPakistaniBangladeshiAny other Asian Background (please specify) ________________________
Chinese or Other Ethnic Group:ChineseAny other Ethnic Group (please specify) _______________________
Mixed Ethnic Background:White and Black CaribbeanWhite and Black AfricanWhite and AsianGypsy and Traveller Any other mixed background (please specify) ___________________
Rather not say
Age: Under 2525 - 3435 - 4445 - 5455 +Rather not say
Religion: Agnostic
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AtheistBaha’iChinese (Taoist)HinduBuddhistChristianHumanistJapanese (Shinto)JewishMuslimPaganRastafarianSikhSpiritualistOtherNot recordedRather not say
Number of years experience supporting people with Learning Disabilities: 1-2 years3-5 years6-10 years11-15 years16-20 years20 + years Rather not say
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Appendix G: Recruitment Email
Dear (Service Manager)I am Trainee Clinical Psychologist at the University of Surrey. I am conducting research to explore how support staff understand their role in supporting the sexuality of people with learning disabilities. Research to date suggests support staff hold a positive attitude towards the sexuality of people with learning disabilities but little is known about how staff understand and practice their role e.g. how they respond to sexuality issues in practice etcI plan to conduct one hour interviews with support staff to find out more about how staff understand and incorporate the sexuality needs of people with learning disabilities in to their everyday practice. I am therefore contacting services in an attempt to recruit possible participants. I hope to recruit staff meeting the following criteria:
- Over 18 years old- Hold a support/care worker role with 10 or more hours of 1:1 contact with people
with learning disabilities per week. This is to ensure data is collected from the staff who support people with learning disabilities in a range of everyday life experiences and are not managers, or therapists have less direct contact with service users
- Hold a support/care worker role in a residential/supported living service- Support service users with a mild to moderate learning disability - Have 12 or more months’ experience as a support worker- Fluent in spoken English
If your service would be happy to support this research I would like to arrange a convenient time to come and speak with the staff team about participating. If this is possible please contact me via email so we can arrange a convenient time. If you have any additional questions or wish to the discuss the research in more detail before making a decision about your service’s involvement then please feel free to contact me. I have attached a copy of the ‘Participant Information Sheet’ which may answer some initial questions you may have. I have also included a copy of the interview questions so you are aware of the content of the interview. Can I please request you do not share any of the content of the questions with support staff as these questions will be used during the interview process. This research has been approved by the Faculty of Arts and Human Sciences Ethics Committee at the University of Surrey
I look forward to hearing from youYours Sincerely Trainee Clinical Psychologist
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Appendix H: Information Sheet
Participant Information Sheet
I am a Trainee Clinical Psychologist at the University of Surrey, Guildford. I have a degree in psychology and am now training to become a qualified Clinical Psychologist. For my training I work part time on clinical placements and part time on my studies. As part of my training I have to conduct research. I would like you to take part in my research.
Before you decide to take part it is important you understand what taking part in this research will involve. Please take time to read the following information. Please ask if there is anything that is not clear or if you would like more information.Research Project
How do support staff understand their role in supporting the sexuality of people with learning disabilities?
This research aims to explore how support staff understand their role in supporting the sexual needs/sexuality of people with learning disabilities. It aims to understand more about the ways in which staff are approaching and responding to the sexual needs of people with learning disabilities. What will happen?
If you to decide to take part you will be asked to sign a consent form. You will be asked to answer a questionnaire asking some simple questions
about your age, your work experience etc. You will then take part in a 1:1 interview with the researcher at your place of
work or at a convenient location. The interview questions will be on the topic of people with learning
disabilities and their sexual needs/sexuality. Questions will ask what you might do or think in certain situations.
The interview will be recorded on a Dictaphone. This will only be accessed by me and my research supervisors. The only exception to this will be in the event a safeguarding risk is identified (See below ‘Is what I say confidential’)
How long is the interview? The interview will last approximately one hour
What are the benefits of taking part?Very little is known about what staff think about their role in this area. Finding out more information may help services with staff training and support.
What are the risks of taking part?There are no known risks to taking part in this research.
Some people may find the topic of sexuality difficulty or uncomfortable. If you feel uncomfortable at any point during the interview you can stop.
Is what I say confidential?All data will be kept confidential and stored anonymously – no one will be able to identify who you are in the report of the research.
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My research is supervised to ensure I am conducting the research properly according to ethical guidelines. Anonymised data may be seen by research supervisors and examiners. Anonymised quotes will be used in the reporting of this research.
All audio recordings and information gathered during this research study will be stored securely in a locked container at the researcher’s home initially and then at the University of Surrey in accordance with Data Protection Act 1998 and will be destroyed after ten years.
If you share information during the interview which leads me to be concerned about your safety or the safety of others I will discuss these concerns with my research supervisors. If a safeguarding risk is identified, I am required to follow Sussex Safeguarding Adults Policy and Procedures (2015). This may require me to break confidential and discuss issues with the local safeguarding team and other relevant agencies.
What happens when the research study is completed?I will be submitting my research as part of my qualification. I also to hope to publish the research in relevant journals. All personal details and quotes will remain anonymous and no one will be able to identify who you are.
What are my rights?- You can decide to stop being a part of the research study at any time without
having to give an explanation. - You have the right to withdraw at any time during the interview- After the interview you are still able to withdraw your data until the point of
analysis. Please contact me by 1st May 2015 if you decide to withdraw your data.
- You have the right to refuse to answer any question that is asked of you. - You have the right to have your questions about the procedures answered.
If you have any questions as a result of reading this information sheet, you should ask the researcher before the interview begins.
This study has been reviewed and approved by the University of Surrey, Faculty of Arts and Human Sciences Ethical Committee
What do I do if I have a complaint?Any complaint or concerns about any aspects of the way you have been dealt with during the course of the study will be addressed. Please contact Karla Maguire on 01483 686509. If you remain unhappy and wish to speak with my research supervisor please contact Nan Holmes or Kate Gleeson on 01483 689441
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Appendix I: Consent Form
I .......................................................... voluntarily agree to take part in the study on ‘How do support staff understand their role in supporting the sexual needs of people with learning disabilities?’
I have read and understood the Information Sheet provided. I have been given a full explanation by the researcher of the purpose, likely duration of the study, and of what I will be expected to do.
I understand that in the event a safeguarding risk is identified during the interview that the researcher will break confidentiality and is required to follow Sussex Safeguarding Adults Policy and Procedures and report concerns to the relevant safeguarding team. This may be without my consent.
I have been told that if I experience any discomfort or distress during the interview I have the right to stop the interview.
I understand that I am free to withdraw from the study at any time without needing to justify my decision and without prejudice.
I understand that my interview will be recorded. I understand that only the researcher and research supervisors will have access to this recording. The only exception to this will be if a safeguarding issue is identified. The recording will be stored securely in a locked container.
I understand that all personal data relating to participants is held and processed in the strictest confidence, and in accordance with the Data Protection Act (1998). I consent to my anonymised personal data and interview responses being used and confirm that I will not seek to restrict the use of the results of the study on the understanding that my anonymity is preserved. I understand that anonymised direct quotes may be used in the reporting of this research.
I have been given the opportunity to ask questions on all aspects of the study and have understood the advice and information given in response to my questions.
I confirm that I have read and understood the above and freely consent to participate in this study. I have been given adequate time to consider my participation and agree to comply with the instructions and restrictions of the study.
Name of Participant Signed Date
Name of researcher/person taking consent Signed
Appendix J: Ethical Considerations and Approval
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Sexuality is often regarded as a sensitive topic. At the recruitment meeting
participants received an information sheet fully briefing them on the topic of discussion,
interview procedure and their participant rights. Participants were required to read and sign a
consent form at the interview. They were given the opportunity look at the interview schedule
prior to consenting to take part. In addition, they were asked at the start of the interview if
there were any topics they thought they would be unable to discuss during the course of the
interview. These measures aimed to ensure the participant felt at ease during the interview.
None of the participants asked for any topic to be excluded from the interview.
In discussing sexuality there was a risk that information shared by the participant may
raise safeguarding concerns. Participants were explicitly made aware in the information
sheet, consent form and by discussion that in the event a safeguarding concern was identified,
the local multi agency procedures would be followed. In order to minimise this risk,
participants were encouraged to share their thoughts and feelings via the examples given in
the vignettes rather than discuss individual service users they supported.
All transcripts were anonymised to protect the confidentiality of the participant, the
service and service users. All data was stored and handled in accordance with the Data
Protection Act 1998.
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Appendix K: Quality and Validity
Quality and validity issues were addressed using the criteria outlined in Yardley (2000) and
guidance by Smith et al. (2009) for IPA research.
Sensitivity to Context
Paying attention to the importance of the research process and the role of the
interviewer in eliciting good data, I acknowledged that I was a novice researcher. Therefore I
audio recorded a practice interview. This allowed me to practice my interview skills and gain
feedback from my more expert research supervisor.
To support this quality aspect I kept a reflective research log. In this I explored my
position as a trainee clinical psychologist and my own experiences of being a support worker.
This highlighted my beliefs about autonomy and normalisation which shape how I believe
people with learning disabilities should be supported.
Commitment to Rigour
There has been close engagement with the topic throughout the study which began
with a comprehensive literature review. In maintaining closeness with the data I completed
the majority of transcribing. A homogenous sample was recruited in keeping with IPA.
Transparency and Coherence
I used peer and research supervision to discuss coding and themes in order to support
the credibility of this research.
Documented in the appendix are examples of the analytic process including coding,
initial themes and grouping of themes. Verbatim quotes are used in the main report to
demonstrate and evidence the analysis. These both support the transparency of the research
process.
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Impact and Importance
The discussion section outlines the impact of the research findings for service users, staff,
service and future research.
A range relevant people were consulted regarding the aims and development of this
study. Having a range of experiences working in learning disabilities services including
multiple support worker roles, I as the main researcher, had a range of relevant experience to
draw on during this project. In addition, research and field supervisors working as clinical
psychologist in learning disability services commented of the feasibility and utility of the
research and also supported the development of the interview schedule. Although this
research did not directly involve people with learning disabilities, there were original plans to
access a learning disability research group so people with learning disabilities could comment
on the projects development. Due to a change in circumstances this opportunity was no
longer available when required. The opportunity to consult with people with learning
disabilities may have added to the examples used in vignettes and ensured issues important to
people with learning disabilities were included in the interview schedule.
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Appendix L: Reflections
Views on Sexuality
I understand sexuality from a social constructionist perspective. I hold the view that
sexuality is learnt and created by society. For example, the responses of others and wider
society shape our understanding of the social and emotional aspects of sexuality. In light of
this, I do not view sexuality as a stable construct but as something that can change with time,
culture and experience. I consider sexuality to be part of an individual’s identity and how
they understand themselves. From my perspective this includes aspects such as masculinity,
femininity, relationships and appearance. The World Health Organisations (2006) definition
of sexuality captures my understanding of sexuality.
Sexuality is a central aspect of being human throughout life and encompasses sex,
gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and
reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires,
beliefs, attitudes, values, behaviours, practices, roles and relationships. While
sexuality can include all of these dimensions, not all of them are always experienced
or expressed. Sexuality is influenced by the interaction of biological, psychological,
social, economic, political, cultural, ethical, legal, historical, religious and spiritual
factors. WHO (2006)
I reflected with colleagues on how being a young white British female with no
religious beliefs influenced my views of sexuality. I recognised that I may take a more liberal
approach towards sexuality due to my gender, beliefs and cultural background. I also noted
that I held some stereotypical views on masculinity and femininity that emerged from the
gender roles that exist in my family culture and wider society. This may lead me to consider
sexuality issues differently for males and females.
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Reflections before Data Collection
Before commencing interviews and analysis I contemplated my own responses to the
interview questions to identify my values and beliefs that may have influenced the interview
process and analysis. My experience of being a support worker influenced my responses. I
was able to reflect directly on my own experiences of supporting sexuality issues for people
with learning disabilities. From this process I noticed that I believe it is important to advocate
for others rights and value helping others to achieve their personal goals. In line with this I
notice my own answers to the interview questions demonstrated I was in support of enabling
opportunities around sexuality and sexual identity.
Engaging in this reflexive process enabled me to notice if I was attending to
information congruent or incongruent with my own beliefs during the course of the study.
This awareness was important as IPA employs a double hermeneutic process where the
researcher makes sense of the participants’ meaning.
The majority of participants were female. This may be due to a higher prevalence of
female support workers in the services I approached. However I also considered that female
participant may have been more willing to participate due to feeling more comfortable with a
researcher of the same gender.
Reflections on Analysis
When reflecting on the themes identified in this study, I noticed that the themes of ‘A
juggling Act’ and ‘There Is No Rulebook’ were in keeping with my personal understanding of
being a support worker and supporting people with learning disability with issues of
sexuality. I could relate to the experience of considering facilitation and protection and it
sometimes being a difficult role to negotiate. I was surprised at the predominance of
minimising and infantilising language that contributed to the theme of ‘Keeping Sexuality at
Arm’s Length’. From my own experiences as a support worker I had expected this to be
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evident at times, however the frequency of comments that could be interpreted as minimising
sexuality for people with learning disabilities surprised me.
I was additionally surprised that the Mental Capacity Act and issues of capacity and
consent were rarely considered. On reflection I considered if this surprise was attributable to
the influence of my current role as a Trainee Clinical Psychologist where I am trained to
routinely consider capacity and consent issues. I questioned whether this would have been in
the forefront of mind when I was a support worker and judged that it probably would not.
Finally, I noticed appearance was not routinely considered despite it being, in my
view, an everyday aspect of our sexuality. A number of aspects of sexuality can be conveyed
through appearance including sexual intentions, masculinity and femininity. This can be
expressed through appearance in a number of ways included, body image, clothing, make up
etc.
Excerpts from Reflective Research Log
13/10/15: Struggling with moving into higher level interpretation as moving away from the
quotes and the data. But I think this is probably because I am new to qualitative research and
not used to the process. Currently have too many themes that are mostly descriptive. Need to
work with my interpretation more for what that means in how support workers understand
role
19/10/15 Peer Supervision: Discussed what I’m finding reflects generic support worker role
– thinking about the specificity of my themes to sexuality. Some of the clearest themes are
likely to be generic to all support needs. Is sexuality seen as the same or different from other
needs?
20/11/15: Worried about losing information. I think this is as I still have some worries about
themes not linking directly to participant’s quotes when actually they are in the data they are
just now described in the context of my interpretation
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20/12/15: Having psychodynamic teaching at uni at the moment. This is likely to be
influencing my thinking about things being conscious/unconscious.
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Appendix M: Example of Transcript with Coding
Excerpt from Interview 4
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Excerpt from Interview 6
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Appendix N: Initial Themes for each Participant
Interview 1Not very important part of roleSupporting people to be happyUncertaintyTalking is goodProtecting the vulnerable Making the ‘right’ decisionChecking decisionsDeal with things the person with learning disability cant Guided by own values
Interview 2 Offering support Make things accessibleSexuality spectrum‘Outside’ factors effect ideas on roleHold view of person as individual adultLimits to roleHolding a wider perspectiveManaging vulnerabilityTalkingTeam decisionsJokes are made
Interview 3Advisor CommunicatorFacilitator Info gathererProtector Minimising/infantilising viewUncomfortable to deal with Lots of influences on your perspective Reactive
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Interview 4Sexuality is complexRole in assessing context/bigger pictureInfo gatherAdvocate for holding normalised viewHolding uncertaintyCommunicationVulnerability Need Team decisionLimit to roleSelf awareness neededLots of mediating factorsReact to sexuality needsChildlike language
Interview 5Not a big part of roleUnspokenConfusingRole is to support happinessRole is to correct/guideView the bigger pictureRole in safetyRole in communicationInfantilising languageTeam decisions React when issues come up
Interview 6Not a big part of roleUncertainty about what to doComplex to deal withSexuality is observableOwn values influence youSafety is paramountControlNo one viewpoint – multiple influences Team decision
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Appendix O: Grouping Initial and Final Themes
Superordinate Theme 1: A Juggling Act
Superordinate Theme
Themes Sub Themes Individual Themes
A Juggling Act
Facilitator
Support - Supporting people to be happy - Offering support - Advisor - Facilitator - Role is to support happiness- Role is to correct/guide
Communication - Talking is good- Talking- Make things accessible- Communicator- Info gatherer- Info gather- Communication- Role in communication
Normalising View
- Hold view of person as individual adult
- Advocate for holding normalised view
Protector
Helicopter View - Making the ‘right’ decision- Checking decisions- Deal with things the person with
learning disability cant - Holding a wider perspective- Role in assessing context/bigger
picture- View the bigger picture
Vulnerability - Protecting the vulnerable - Managing vulnerability- Protector - Vulnerability - Role in safety- Safety is paramount- Control
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Superordinate Theme 2: There is No Rulebook
Superordinate Theme
Themes Individual Themes
There is No Rulebook
Personal Influences
- Guided by own values - Uncomfortable to deal with- Self awareness needed- Own values influence you
External Influences
- ‘outside’ factors effect ideas on role- Lots of other influences on your
perspective - Lots of mediating factors - No one viewpoint – multiple
influences
Sexuality is Complex
- Sexuality spectrum- Sexuality is complex- Confusing - Complex to deal with
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Superordinate Theme 3: Keeping Sexuality at Arm’s Length
Superordinate Theme
Themes Individual Themes
Keeping Sexuality at Arm’s Length
I haven’t really had any dealings
with it
- Not a very important part of role- Not a big part of role- Unspoken - Not a big part of role
They might peck each other on the lips but no more than
that
- Jokes are made - Childlike language - Minimising/infantilising view- Infantilising language
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I’d take it higher thats the way it
goes
- Limits to role- Team decisions- Need team decisions - Limit to role- Team decisions - Team decisions
Major Research Project Proposal
How do support staff understand their role in supporting the sexuality of people with learning disabilities?
Year 2
September 2014
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IntroductionBackground
Sexuality encompasses a wide range of experiences that contribute to our self-
identity. On a daily basis we embrace different expressions and experiences of our sexuality.
Historically negative attitudes (Craft & Craft, 1981; Deisher, 1973; Mitchell, Doctor, &
Butler, 1978) and practises (Garbutt, 2008) towards the sexuality of people with learning
disabilities have denied them the opportunity to express their sexuality.
Following the introduction of the philosophy of normalisation (Wolfensberger, 1972)
and the development of policy based on its theoretical foundation (e.g. Valuing people, 2001)
it was promoted that people with learning disabilities should be supported to engage in a wide
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range of normalised life experiences and opportunities. This has been broadly adopted
however there continues to be less support for normalised life experiences that relate to
sexuality (Scotti, Slack, Bowman & Morris, 1996).
It is widely acknowledged that the feelings and behaviour of carers are central in
determining the opportunities and experiences that people with learning disabilities have
access to (Brantlinger, 1983; Brown & Pirtle, 2008; Swango-Wilson, 2010). In practice this
means carers hold an important facilitating role with regards to sexuality as they are often
responsible for determining access to sex education, sexual expression and experience
(Bazzo, Nota, Soresi, Ferrari, Minnes, 2007; Swango-Wilson, 2010). With this in mind a
large proportion of research in the field of sexuality and learning disabilities focuses on
exploring the attitudes people hold about sexuality and people with learning disabilities.
Attitude Research
Current research suggests carers hold positive attitudes towards the sexuality of
people with learning disabilities (Cuskelly & Bryde, 2004; Cuskelly & Gilmore, 2007; Evans,
McGuire, Healy, & Carley, 2009; Ryan & McConkey, 2000; Saxe & Flanagan, 2013). The
presence of positive attitudes could be considered to reflect the acceptance of the current
philosophy of normalisation however the research also leaves us with further questions and
gaps in our knowledge. The methods used to explore the attitudes towards sexuality and
learning disabilities have often employed the use of likert questionnaires (Bazzo et al., 2007;
Cuskelly & Bryde, 2004; Cuskelly & Gilmore, 2007; Evans et al., 2009; Meaney Tavares &
Gavidia-Payne, 2012; Ryan & McConkey, 2000; Saxe & Flanagan, 2013). From this research
we can only draw limited conclusions due to methodological weaknesses. Attitude scales
capture a reflection of one contextual moment and are likely to be influence by the
participant’s interpretation of the scale terms and personal experience. Participants’ responses
are then further interpreted by the researcher in order to draw a general conclusion. This
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interpretation process can mean the context and detail of a person’s attitudinal stance is not
accurately reflected. Consequently, conclusions can become over generalised and risk losing
the participants intended meaning (Potter & Wetherall, 1987).
More importantly, attitude research is limited by its lack of ability to inform on
behaviours and it does not offer knowledge about people’s actions in relation to sexuality.
For example; how people deal with sexuality issues, how they approach, promote or protect a
person’s sexuality. Theories such as the Theory of Planned Behaviour (Ajzen, 1988) suggest
that the behaviour of carers and how they engage with sexuality issues is likely to be more
complex than a mere reflection of their attitudes. Rushbrooke, Murray and Townsend (2014)
conducted a meta-synthesis focusing on the difficulties experienced by caregivers in regards
to sexuality. One of the themes extracted ‘fear and uncertainty’ highlighted the lack of
confidence caregivers had in dealing with issues of sexuality, therefore despite holding
positive attitudes and wanting to support sexuality caregivers may be restricted by their
confidence in dealing with issues.
As a result of the complex relationship between attitudes and behaviours, attitude
research has given limited insight into the ways in which people with learning disabilities are
supported. We still lack knowledge on what caregivers ‘do’, their practical experiences and
how they engage with people with learning disabilities about their sexuality.
Rationale
Research highlights that carers have a facilitating role in the opportunities and
experiences available to people with learning disabilities (Brantlinger, 1983; Brown & Pirtle,
2008; Swango-Wilson, 2010). Despite research highlighting this vital role, no research to
date has explored carers own personal understanding of their role in relation to supporting the
sexual needs of people with learning disabilities or how their understanding of their role
influences their practice. It is important to gather information on how carers are
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incorporating the sexual needs of people with learning disabilities into their role and daily
practice in order to develop our understanding of the ways in which people with learning
disabilities are supported.
Therefore an exploratory study exploring how support staff understand their role and
support people with learning disabilities will give insight into the ways in which staff are
approaching and responding to the sexual needs of people with learning disabilities.
Clinical Relevance
This is an under researched area therefore requires an exploratory approach. It is
anticipated that exploring how carers understand their role will highlight themes as to the
aspects of sexuality they may/may not actively engage with and the means by which they
offer support to people with learning disabilities about their sexuality.
A training deficit in sexuality and learning disabilities has consistently been reported
(Futcher, 2011; McConkey & Ryan, 2001) and many researchers recommend staff training
for sexuality issues (Christian, Stinson, & Dotson, 2001; Yool, Langdon, & Garner, 2003).
Gaining an understanding of how carers currently understand their role and exploring the
ways in which they are approaching the sexual needs of people with learning disabilities may
help inform the aims and objectives of future training packages.
Research Question
How do support staff understand their role in supporting the sexual needs of people
with learning disabilities? How does this affect their practice?
Method
Design
This study will employ a qualitative approach. Data will be collected via semi
structured interviews with support staff. Interpretative Phenomenological Analysis (IPA) has
been chosen as a suitable qualitative method for this research as it is concerned with the
88
experience of the participant (Smith, Flowers & Larkin, 2009). This research aims to gain
knowledge of participants’ understanding of their role in supporting the sexual needs of
people with learning disabilities to gain insight into their practice.
Participants
Data will be collected from 6-8 participants. A small sample will be used in keeping
with the context of qualitative IPA studies and following the guidance of Smith et al., (2009)
for doctoral research. IPA usually employs purposive homogenous sampling so as to be able
to examine the psychological variability of the group in detail (Smith et al., 2009) therefore
the following criteria will be applied to sample selection:
- Over 18years old
- Hold a support/care worker role with 10 or more hours of 1:1 contact with
people with learning disabilities per week. This is to ensure data is collected
from the staff who support people with learning disabilities in a range of
everyday life experiences e.g. Not managers, psychologist, SLT etc who hold
more specific support roles
- Hold a support workers role in a residential/supportive living service
- Support Service Users with a mild to moderate learning disability
- Have 12 or more months experience as a support worker
Participants will be recruited from residential services and supported living
accommodation. It is anticipated participants will be employees of Sussex Partnership NHS
Trust services. Recruitment had been discussed with the Trust and the researcher is currently
awaiting final confirmation that Sussex Partnership NHS Trust will support the recruitment of
participants for this project.
Interview Schedule
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A semi structured interview schedule will be developed to collect data. The interview
schedule will begin with open questions aimed at gaining information on how the participants
understand their role in supporting the sexual needs of people with learning disabilities.
Following this, vignettes will be used to explore how participants would respond and
approach scenarios again exploring what they would believe their role to be in each situation.
Vignettes have been found to be an effective method for generating discussions about
sexuality issues (Shankar, 2008).
The interview schedule development phase will follow the process outlined in Smith et
al. (2009):
1. Consider research questions and overall topic area you want participants to discuss
2. Generate a range of topics from the overall topic area
3. Arrange topics into most logical sequence
4. Review phrasing of questions
5. Discuss draft schedule with another reviewer
This will include generating 4 vignettes based on common issues relating to the sexual needs
of people with learning disabilities. The development of the vignettes will be supported and
guided by the experience of field supervisors as to reoccurring sexuality issues.
The draft schedule will then undergo a consultation phase being discussed with
supervisors and a potential participant representative. The interview schedule will comprise
6-10 questions (including 4 vignettes) which should elicit an interview lasting approximately
one hour (Smith et al., 2009).
An initial draft interview schedule is appended (Appendix A)
Procedure
1. Application to Sussex Partnership NHS Trust research and development department.
Application to University of Surrey FAHS ethics committee
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2. Researcher to visit identified services to explain research to staff team and invite
participants. Potential participants meeting inclusion criteria will be given an
information pack including study information, example consent form and researcher
contact details
3. Contact interested participants to arrange interview
4. Interview to be arranged at a mutually convenient time. It is anticipated interviews
will be held at the participants’ place of work providing there is available confidential
room space. Alternatively a room will be arranged at another trust site that is agreed
as convenient location for the researcher and participant.
5. Interview conducted. Interviews will be audio recorded on a Dictaphone
6. Interviews uploaded to NHS encrypted memory stick and stored in accordance with
Sussex Partnership NHS Trust guidelines. Original audio recordings will be deleted
7. Interview transcribed and anonymised
8. Data Analysis – see Data Analysis section
Ethical Considerations
As this research does not directly involve Service Users it will not be required to gain
NHS Ethical approval. This proposal will be submitted for ethical approval by the Faulty of
Arts and Human Sciences at the University of Surrey
Sexuality is often regarded as a sensitive topic. Participants will receive an
information sheet fully briefing them on the topic of discussion, interview procedure and
participant rights. Participants will be informed that they can decline to answer any questions
or terminate the interview if they do not wish to proceed due to the topic of discussion or for
any other reason. The information sheet and consent form will explicitly state that any
information disclosed by the participant that is deemed to constitute a safeguarding issue will
be reported by the researcher in line with trust safeguarding procedures.
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In keeping with IPA research, information sheets and consent forms will also
explicitly outline that the participant consents to not only data collection but also the outcome
and reporting of the research which may include anonymous quotes (Smith et al., 2009)
R and D Considerations
As this project is recruiting staff from Sussex Partnership NHS Trust it will require
approval from the trust research and development department. Sussex Partnership NHS Trust
will only support research in line with their current research priorities. It is anticipated this
research would be supported under their current ‘learning disability’ priority research theme.
Project Costing
It is anticipated that transcribing interviews will be the only cost incurred during this
project. The available budget of £200 will be used for this purpose. Any outstanding
transcriptions will be completed by the researcher.
Proposed Data Analysis
IPA has been chosen as a suitable qualitative method for this research as it is
concerned with the experience of the participant.
Analysis will follow the process outlined in Smith et al. (2009):
1. Reading and re reading transcript
2. Initial noting
3. Developing emergent themes
4. Searching for connections across emergent themes
5. Repeat for all transcripts
6. Look for patterns across cases
Yardley (2000) outlines four principles to assess the quality of qualitative research;
‘sensitivity to context’, ‘commitment and rigour’, ‘transparency and coherence’, and ‘impact
92
and importance’. Attention will be paid to these principles throughout the research process to
promote the quality and validity of this research. The recommendations in Smith et al. (2009)
will guide the researcher in addressing these four principles for IPA research. E.g. including a
high number of verbatim quotes in the report writing to demonstrate ‘sensitivity to raw
materials’
Involving/Consulting Interested Parties
This research is likely to be of interest to learning disability services and people with
learning disabilities. The research proposal has been discussed with a field supervisor
currently working in community learning disability services to ascertain its value to services.
Feedback indicated this would be useful research to inform services on future support and
training needs of staff. This research will be supported and reviewed with a field supervisor
throughout the project to ensure useful data is collected.
This proposal and ongoing research decisions will be discussed at the Sussex
Partnership NHS Trust Learning Disability Research Group in order to gain the feedback and
input of people with learning disabilities and clinicians working with people with learning
disabilities.
This proposal has been presented for peer review and received peer feedback which
indicated that the topic of this research would be of interest to other colleagues.
Contingency Plan
It is not anticipated that the design of this study will be altered. Due to the small
number of participants required it is not anticipated that there will recruitment difficulties. In
the event additional recruitment sources are required contact will be made with colleagues in
Surrey and Borders Partnership NHS Foundation Trust and third sector care providers. If this
is necessary relevant approval from the organisations research and development department
will be gained prior to recruitment. In the event of ongoing recruitment difficulties participant
93
inclusion criteria will be relaxed and support workers with 6 months experience as a support
worker (rather than 12months) will be eligible to participate.
Dissemination Strategy
It is important that the outcome of this research is fed back to the participant
population and recruitment sites. A staff presentation or service newsletter is likely to be a
suitable accessible format for dissemination to this group. In addition Sussex Partnership
NHS Trust publishes the ‘Research Magazine’ which is distributed to all trust services.
Reporting the research via this magazine would enable dissemination to a wide number of
Trust employees.
A journal article will also be prepared for submission to a suitable peer reviewed
journal for publication. It is important this research is disseminated in a format that is
accessible to people with learning disabilities. The researcher will consult with the Learning
Disability Research Group to develop a meaningful and accessible way to disseminate the
outcome of this research to people with learning disabilities.
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Deisher, R. W. (1973). Sexual behaviour of the retarded in institutions. In F de la Cruz and G.
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Brantlinger, E. (1983). Measuring variation and change in attitudes of residential care staff
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sexuality of individuals with intellectual disabilities: Examining beliefs using a Q-
methodology approach. Sex Education, 8(1), 59-75. doi:10.1080/14681810701811829
Christian, L., Stinson, J., & Dotson, L. A. (2001). Staff values regarding the sexual
expression of women with developmental disabilities. Sexuality and Disability, 19(4),
283-291. doi:10.1023/A:1017957409670
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Evans, D. S., McGuire, B. E., Healy, E., & Carley, S. N. (2009). Sexuality and personal
relationships for people with an intellectual disability. Part II: Staff and family carer
perspectives. Journal of Intellectual Disability Research, 53(11), 913-921.
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Futcher, S. (2011). Attitudes to sexuality of patients with learning disabilities: a review.
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Developmental Disability, 37(3), 269-273. doi:10.3109/13668250.2012.701005
Mitchell, L., Doctor, R. & Butler, D. (1978). Attitudes of caretakers towards the sexual
behaviour of mentally retarded persons. American Journal of Mental Deficiency, 83,
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by caregivers in relation to the sexuality of people with intellectual disabilities? A
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Saxe, A., & Flanagan, T. (2013). Factors that impact support workers’ perceptions of the
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Shankar, P. R. (2008). Using case scenarios and role plays to explore issues of human
sexuality. Education for Health, 21, 108.
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137-150. doi:10.1023/A:102549941778
Literature Review
Attitudes towards the Sexuality of People with Intellectual
Disability
Year 1
June 2014
97
Abstract
The aim of this review was to explore current attitudes towards the sexuality of people
with intellectual disability. A rigorous and systematic search of the literature produced 20
relevant papers. Analysis of this literature identified four major findings with relevance to
this review. Firstly, most studies found positive attitudes towards the sexuality of people with
intellectual disability. A critical evaluation of this literature raises questions about the validity
of the conclusions drawn. Secondly, participant characteristics such as age and role have an
impact on the attitudes held. People who were older and had more frequent contact with
people with intellectual disability held less positive attitudes. Thirdly, the gender of people
with intellectual disability has an impact on the attitudes held and expressed and was in line
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with cultural norms around male/female sexuality. Finally negative attitudes to sexuality are
still evident in the literature. On occasion some negative attitudes towards particular aspects
of sexuality (e.g. parenting) can be overlooked by papers concluding generalised ‘positive’
attitudes to sexuality. The review concludes attitude research is often limited by the
measures it employs and may fail to give accurate insight into the way in which the sexuality
of people with intellectual disability is supported. Arguably attitudes may have been
influenced by recent cultural changes in the views of people with intellectual disabilities.
However, the findings suggest further research exploring the practices of those supporting
people with intellectual disabilities would be valuable in understanding the support and
opportunities people with intellectual disabilities are offered.
Statement of Journal Choice
Target Peer Reviewed Journal: Journal of Intellectual and Developmental Disability
2012 Impact Factor: 1.057
The Journal of Intellectual and Developmental Disability (JIDD) has been identified as a
suitable peer reviewed journal for the publication of this review. This journal has been
identified as it published literature reviews in the field of intellectual and developmental
disability. Importantly, is a multidisciplinary journal therefore has a wide reader base; the
topic of this review is likely to be of interest to a range of multidisciplinary professionals
supporting people with intellectual disability.
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Sexuality is a central aspect of being human throughout life and encompasses sex,
gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and
reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires,
beliefs, attitudes, values, behaviours, practices, roles and relationships. While
sexuality can include all of these dimensions, not all of them are always experienced
or expressed. Sexuality is influenced by the interaction of biological, psychological,
social, economic, political, cultural, ethical, legal, historical, religious and spiritual
factors. WHO (2006)
Sexuality encompasses a wide range of experiences that contribute to our self-identity. On a
daily basis we embrace different expressions and experiences of our sexuality. Sexuality is an
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evolving concept in a person’s life and expressions of sexuality may vary throughout the
lifespan. Historically for people with intellectual disability this has been at best a restricted,
and at worst an absent part of their identities (McCarthy & Thompson, 2010).
“Intellectual disability is a disability characterized by significant limitations in both
intellectual functioning and in adaptive behaviour, which covers many everyday social and
practical skills” (American Association on Intellectual and Developmental Disabilities,
2014). Intellectual disability is a spectrum condition and can affect people’s functioning in
varying severities however a common belief in the early 20th century that all people with
intellectual disability lacked the skills and capacity to live in the community saw many
people with intellectual disability living within institutions. Within these restrictive settings
people’s opportunity to engage in a range of human experiences was limited. At this time it
was regarded as inappropriate for people with intellectual disability to engage with their
sexuality and as a result males and females lived separately and sterilisation was common
practice (Garbutt, 2008).
During the 1970’s negative attitudes towards sexuality and intellectual disability were
consistently reported (Craft & Craft, 1981; Deisher, 1973; Mitchell, Doctor, Butler, 1978).
Societies discomfort with and misunderstanding of sexuality and people with intellectual
disability led to 3 central stereotypes emerging; the asexual, the sexually innocent and the
sexually deviant (Giami, Humbert, & Laval, 1983). A belief that people with an intellectual
disability lacked sexual need or desire saw them infantilised and viewed as asexual perpetual
children (Bemish, 1987; Deloach, 1994). Extending from this emerged a view of sexual
innocence, where those with an intellectual disability were deemed sexually vulnerable and in
need of paternalistic protection (Spieckler & Steutel, 2002). Finally, in contrast, the assertion
that people with an intellectual disability were unable to understand or control their sexual
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desires saw some deemed sexually deviant and responsible for problematic sexual behaviours
and sexual offences (Antonak, Fiedler, & Mulick, 1989).
The philosophy of normalisation (Wolfensberger, 1972) was embraced by health and
social care services during the 1980’s. The introduction of policy and procedure founded on
this principle promoted that people with intellectual disability should be supported to engage
in a wide range of normalised life experiences and become valued members of the
community. At this time it became more accepted that those with intellectual disability have
the same sexual needs and desire as those without (Mitchell et al.,1978).
It has long been considered that the feelings and behaviours of carers is a key factor in
establishing the opportunities available to people with intellectual disability (Brantlinger,
1983; Brown & Pirtle, 2008). Swango Wilson (2010) described how people with intellectual
disability often become captured in a system where their access to information,
communication and interactions are determined by their caregivers. In practice this may
result in carers holding a controlling role in the development of the person’s sexual identity.
With this in mind a large proportion of research in the field of sexuality and intellectual
disability focuses on exploring the attitudes people hold about this topic with a view to gain
insight into the ways in which people may react to sexuality issues and support people with
intellectual disability’s sexuality.
Research during the 1990’s indicated a continued acceptance and move towards more
liberal attitudes towards sexuality and people with intellectual disability (Murray & Minnes,
1994; Trudel & Desjardins, 1992). However these positive attitudes were consistently
reported in the context of boundaries, barriers and limitations with research indicating that
attitudes were mediated by a number of factors including the respondents age, training and
position (Murray & Minnes, 1994; Trudel & Desjardins, 1992). The existence of multiple
barriers to the presence of positive attitudes demonstrated people continued to hold an
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unsophisticated philosophy about people with intellectual disability’s sexuality. Further,
despite overall increased support for normalised life experiences for people with intellectual
disability Scotti, Slack, Bowman and Morris (1996) reported people continued to demonstrate
less support for normalised life experiences that related to aspects of sexuality.
Liberal and egalitarian policies have continued to be promoted by health and social
care agencies supporting people with intellectual disability. As a result legislation and
guidance was implemented to protect the rights of individuals with intellectual disability
(Australia Disability Act, 2006; UK Human Rights, Act 1998; US Developmental Disability
and Bill of Rights Act, 2000; Valuing People, 2001.). This ensured services were required to
embrace person centred working and support the rights of people with intellectual disability.
It has been assumed this legislation would entrench values into society that would result in
changes in our attitudes and practices supporting sexuality. Despite changes at policy and
service level restrictive practices and barriers are still reported (McGuire & Baley, 2011).
There is still limited opportunity for people with intellectual disability to express their
sexuality (Oliver, Anthony, Liemkuhl & Skilman, 2002) and they continue to be heavily
reliant on others for information (Bazzo, Nota, Soresi, Ferrari, & Minnes, 2007).
There has been concern that people with intellectual disability’s have limited sexual
experiences and limited access to sex education (Servias, 2006) which make them more
vulnerable to unsafe sexual practices, abuse (McCabe, 1999; McCarthy & Thompson, 1997)
and potentially deprives them of important human experiences. It could be argued that these
restrictions are a consequence of the negative attitudes of others who fail to offer support for
these opportunities and experiences.
There continues to be variation in attitudes and levels of support towards sexuality
and intellectual disability. The degree of variation in attitudes generates the question as to
whether the legislation and guidance of the 21st century has been able to perpetuate
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ideological change that sees us supporting and embracing sexuality. The aim of this review
was to explore current attitude research to sexuality and intellectual disability and establish
the current themes within the literature.
Method
Research Question
This review aimed to explore our current knowledge of attitudes towards the topic of
sexuality and intellectual disability; including what attitudes currently exist and what factors
may affect the attitudes people hold. Given that research indicates that ‘others’ often have a
facilitating role in people with intellectual disability’s experience of sexuality the review
focussed on the attitudes of others (e.g. community, staff, family etc.) and not people with
intellectual disability’s own attitude towards their sexuality.
Research Question: What knowledge do we have about the current attitudes towards
the sexuality of people with intellectual disability?
Search Strategy
A literature review was conducted in March 2014 in order to identify papers relevant
to the research question. A list of search terms was generated including a range of
terminology to capture intellectual disability. The key terms searched were ‘learning disab*’
OR ‘mental retard*’ OR ‘mental handicap*’ OR ‘intellectual disab*’ OR ‘developmental
disab*’ AND sexuality OR ‘sexual identity’. Searches were conducted on several databases
including the medical (Medline®), psychological (Psycinfo®) and education sector (British
Education Index).
Inclusion and Exclusion Criteria
The initial search results were filtered by the process detailed in Figure 1. As the aim
of the review was to assess current attitudes, studies prior to 2000 were excluded. Articles not
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written in English were also excluded. Due to the different legislation supporting consent and
capacity issues for under 18s all studies focussing solely on adolescent and young people’s
sexuality were excluded.
The literature search produced 20 studies of relevance that focussed on attitudes of
others towards the sexuality of people with intellectual disability that have been published
since 2000.
This review will employ a narrative synthesis approach aiming to characterise the
literature and report study findings in a meaningful way so as to outline our current
knowledge base on this topic. Results categories will be identified by systematically
analysing the themes that emerge in the findings of each paper.
Figure 1. Search process flowchart
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Records identified through searching databases (N=932)
- Psycinfo® (N= 529)- Medline® (N=51)- Web of Science™ (N=317)- British Education Index (N=35)
Additional records identified through other sources (N=0)
Exclusion of duplicate records (N=499)
Potentially eligible records (N=433)
Full text articles assessed for eligibility (N=23)
Excluded, did not meet criteria (N=410) (Published pre 2000, Not available in English, Under 18s)
Full text articles excluded (N=3)Focus on people with intellectual disabilities attitudes to own sexuality (N=3)
Results
The search identified 20 studies relevant to this review. An overview of these studies
is detailed in Table 1.
Overview of Selected Studies
Of the twenty studies identified, fourteen employed quantitative methods which was
predominantly characterised by the use of likert scale questionnaires. Eight of these studies
developed their own likert measures with the remaining using established questionnaires.
Three utilised qualitative methods in the form of interviews and three used mixed
methodology. Ten of the articles reported studies conducted in Europe, four in Australia, five
in North America and one in Israel.
The majority of studies focussed on the attitudes of people in paid support roles
including carers and teachers (N=15). Six studies focussed on the attitudes of the general
public and two involved attitudes of family members.
The aim of this paper is to explore the themes within this area of literature to provide
an overview of the current knowledge base. Each study was critically evaluated and key
findings were extracted to build a picture of current attitudes to the sexuality of people with
intellectual disabilities. Reviewing the literature identified four areas of knowledge. Firstly,
that most studies conclude the presence of ‘positive’ attitudes to sexuality. Secondly,
106
Full text articles excluded (N=3)Focus on people with intellectual disabilities attitudes to own sexuality (N=3)
participant characteristics such as age and role have an impact on the attitudes held. Thirdly,
the gender of people with intellectual disability has an impact on the attitudes held and
expressed. Finally negative attitudes to sexuality are still evident in the literature and can on
occasion be obscured by generalised ‘positive’ conclusion. A number of papers contributed to
several areas of knowledge. Table 2 details the contributions of each paper.
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Table 1: Overview of Review Studies
First Author (Year) Sample Design Measure LocationBazzo (2007) Care Staff (N=216) Quantitative SMRAI ItalyFranco (2012) Students (N=454) Quantitative Developed Likert scale questionnaire PortugalGrieve (2009) Care Staff (N=188) Quantitative SAQ UKCuskelly (2004) Care Staff (N=125), Parents (N=43) Quantitative Developed Likert scale questionnaire Australia Saxe (2013) Care Staff (N=25) Quantitative ATS, POS CanadaRyan (2000) Care Staff (N=150) Quantitative Developed Likert scale questionnaire IrelandCuskelly (2007) General Public (N=261) Quantitative ASQ-ID, ASQ-GP AustraliaGilmore (2010) Staff (N=169), Leisure Staff (N=50) Quantitative ASQ-ID, ASQ-GP AustraliaMeaney-Tavares (2012) Care Staff (N=66) Quantitative ASQ-ID, ASQ-GP AustraliaKatz (2000) Students (N=135) Quantitative SMRAI, Developed Likert scale questionnaire,
California F scaleIsrael
Swango Wilson (2008) Care Staff (N=85) Quantitative POS, demographic questionnaire USAParchomiuk (2012) MDT Staff (N=98) Quantitative Developed Likert scale questionnaire PolandParchomiuk (2013) Students (N=181) Quantitative Developed Likert scale questionnaire PolandKarellou (2003) General Public (N= 189) Quantitative GSAQ-ID GreeceWilkenfield (2011) Teachers/Educators (N=10) Qualitative Structured Interview USAYool (2003) Staff (N=4) Qualitative Semi-structured Interview UKYoung (2012) Care Staff (N=10) Qualitative Semi-structured Interview UKChristian (2001) Care Staff (N=43) Mixed Developed Likert scale questionnaire, Case scenarios USAEvans (2009) Staff (N=153)Family Carers (N=153) Mixed Developed Likert scale questionnaire, Case scenarios IrelandBrown (2008) Care Staff (N=40) Mixed Q sort with a concourse of 36 items USAKey: SMRAI = Sexuality and Mental Retardation Attitudes Inventor; SAQ = Sexual Attitudes Questionnaire; ATS - Attitudes to Sexuality Scale; POS - Perceptions of Sexuality Scale; ASQ-ID = Attitudes to Sexuality questionnaire – Intellectual Disability; ASQ-GP = Attitudes to Sexuality Questionnaire – General Population; GSAQ-ID Greek Sexuality Attitude Questionnaire – Intellectual Disability
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Table 2: Key areas of knowledge and contributing papersFirst Author (Year) Positive Characteristics Gender Negative
Bazzo (2007) x xFranco (2012) x xGrieve (2009) x xCuskelly (2004) x x xSaxe (2013) x xRyan (2000) x xCuskelly (2007) x x xGilmore (2010) x xMeaney-Tavares (2012)
x x x
Katz (2000) x xSwango Wilson (2008) x xParchomiuk (2012) xParchomiuk (2013) xKarellou (2003) x xWilkenfield (2011) x xYool (2003) xYoung (2012) x xChristian (2001) xEvans (2009) x xBrown (2008) x
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‘Positive’ Attitudes
Fourteen of the 20 studies reviewed concluded people held positive attitudes to the sexuality
of people with intellectual disabilities. Studies which concluded ‘positive’ attitudes or
concluded attitudes with appropriate synonyms such as ‘liberal’ ‘accepting’ and ‘supportive’
contributed to this area of knowledge. Table 3 details studies concluding ‘positive’ attitudes.
The term ‘positive’ is used throughout the literature. Historically, negative attitudes have
consistently been reported in regards to sexuality and people with intellectual disability (Craft
& Craft, 1981; Deisher, 1973; Mitchell et al.,1978) however fourteen of the twenty studies
reviewed concluded positive attitudes to sexuality thus this review may argue a change in
attitudes. The implementation of legislation and guidance that promotes normalisation and
supports the rights of people with intellectual disability (Australia: Disability Act, 2006; UK:
Human Rights Act, 1998; Valuing People, 2001; Mental Capacity Act, 2005. US:
Developmental Disability and Bill of Rights Act, 2000) could be attributed to the improved
attitudes within the care sector. However evidence of positive attitudes was apparent across
settings including general population and education sector populations (Cuskelly & Bryde,
2004, Wilkenfield & Ballan, 2011) which may indicate a wider societal change in attitudes
influenced by liberalism and equality. In the papers reviewed, positive attitudes were
apparent in both quantitative and qualitative studies however quantitative studies dominated
the review and the contribution to this area of knowledge
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Table 3. Studies concluding ‘positive’ attitudes to sexuality
First Author (Year) Sample Measure ConclusionBazzo (2007) Care Staff (N=216) SMRAI ‘Moderately liberal attitudes’Franco (2012) Students (N=454) Developed Likert scale questionnaire ‘Positive attitudes towards sexuality and
affectivity’Cuskelly (2004) Care Staff (N=125), Parents (N=43) Developed Likert scale questionnaire ‘Generally positive’Saxe (2013) Care Staff (N=25) ATS, POS ‘Moderately accepting’ attitudes.
‘Liberal perceptions of sexuality’Ryan (2000) Care Staff (N=150) Developed Likert scale questionnaire Supportive positive attitudesCuskelly (2007) General Public (N=261) ASQ-ID, ASQ-GP ‘Generally quite positive’Gilmore (2010) Staff (N=169), Leisure Staff (N=50) ASQ-ID, ASQ-GP ‘Generally quite positive’Meaney-Tavares (2012) Care Staff (N=66) ASQ-ID, ASQ-GP ‘Quite positive’Parchomiuk (2013) Students (N=181) Developed Likert scale questionnaire ‘Positive values given to sexuality’Wilkenfield (2011) Teachers/Educators (N=10) Structured Interview ‘Positive view towards sexuality’Yool (2003) Staff (N=4) Semi-structured Interview ‘Generally liberal attitudes’Christian (2001) Care Staff (N=43) Developed Likert scale questionnaire, Case scenarios ‘Supporting attitudes’Evans (2009) Staff (N=153)Family Carers (N=153) Developed Likert scale questionnaire, Case scenarios Liberal attitudesBrown (2008) Care Staff (N=40) Q sort with a concourse of 36 items Overall positiveKey: ATS - Attitudes to Sexuality Scale; POS - Perceptions of Sexuality Scale; ASQ-ID = Attitudes to Sexuality questionnaire – Intellectual Disability; ASQ-GP = Attitudes to Sexuality Questionnaire – General Population
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Quantitative Methodological Issues
A number of methodological considerations make it possible to question the validity
of the ‘positive’ conclusions identified and question how helpful they are in contributing to
our knowledge of sexuality and learning disabilities. Of the fourteen studies concluding
positive attitudes eleven employed the use of likert scales as a measure of attitudes. The
concept of theses scales is to reflect a person’s judgment by marking themselves on a
continuum of agreement. Potter and Wetherell (1987) report three distinct problems with the
use of this measure that means we question the validity of the conclusions drawn from these
studies. Firstly, the interpretation of the scale terms. Likert scales are regarded a quick and
simple measures and so usually focus on polar opposite opinions (good/bad) or levels of
agreement (agree/disagree). They do not elaborate or define the poles to inform the
respondent as to what may constitute a bad or disagreeing attitude or how this may look in
practice. Therefore it is for the respondent to use their own meaning of the word leading to
individual inconsistent interpretations.
Secondly it is important to consider that the original likert scale terms are interpreted
into a conclusion. For example, lack of acceptance may lead researchers to conclude negative
attitudes yet these are perhaps different concepts. The respondents meaning can be lost by the
researchers interpretation; this is particularly so when considering the above point, that the
lack of definition means the respondent is heavily reliant on their personal interpretation of
the scale terms.
The studies reviewed employed a range of attitude scales which predominantly used
the anchors ‘strongly agree’ and ‘strongly disagree’. Where respondents agreed with
statements this was consistently reported and concluded as respondents holding positive or
liberal attitudes (Bazzo et al., 2007; Cuskelly & Bryde, 2004; Katz, Shemesh & Bizman,
2000; Saxe & Flanagan, 2013). The concept of agreement is not synonymous to the concept
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of liberal or positive. Only one author (Franco, Cardoso, & Neto, 2012) made explicit
acknowledgment of the role of interpretation of scale terms in their research. Conclusions of
liberal attitudes were also made from scales focussing on acceptability (Saxe & Flanagan,
2013). The conclusion of liberal attitudes from scales of acceptability and from scales of
agreement would infer these concepts are also comparable and have a shared meaning. In fact
a person may demonstrate acceptance of something but this does not necessarily mean they
agree with it. Accepting and agreeing can be fundamentally different but yet both become
represented by the words liberal and positive in this literature.
Finally it is important to consider the nature of attitudes. They are not static or
enduring therefore research using attitude scales captures only a moment of thought; a
moment influenced by the current context. Conclusions made on this basis are reflective of
one contextual moment rather than a wider attitude base. There is significant variation across
studies as to the brief respondents were given prior to completing the questionnaire. Some
participants were asked to complete the questionnaire with a particular person or
characteristic in mind (e.g. Cuskelly & Bryde, 2004 ‘answer with respect to individual with a
moderate intellectual disability’) whereas other participants received no guidance at all. Few
authors make this clear yet it is likely these factors would have a significant effect on the
attitudes captured at that moment in time.
The reviewed studies were conducted using a self selected sample which may have
introduced bias. In addition response rates were consistently low (<40%) with some studies
only achieving a 22% response rate (Meaney Tavares & Gavidia-Payne, 2012) therefore it is
important to consider who the respondents were. Sexuality is still regarded as a sensitive
topic of research therefore this literature may be influenced by social desirability issues. The
legislation and guidance relating to people with intellectual disabilities promotes choice,
independence and rights (Valuing People, 2001) making these socially desirable attributes in
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a person’s attitude. It is possible that those holding more negative or traditional views would
be least likely to participate (De Schrijver, 2012). For those that did respond anonymously
and in the absence of a researcher, social desirability may still be more influential due to
sexuality being a sensitive topic of research. Therefore there is increased likelihood of over
reporting of socially desirable attitudes (Bradburn, Sudman, & Wansink, 2004). Cuskelly and
Gilmore (2007) may particularly fall to this criticism as participants were know to the
researchers.
Some studies aimed to assess the attitudes of the general public (Cuskelly & Bryde,
2004; Franco, et., 2012; Katz, et al., 2000; Saxe & Flanagan, 2013) yet employed student
samples. This adds significant homogeneity to their general population sample and reduces
mean sample age. This bias is likely to have significantly affected the attitudes reported given
the impact of age on attitudes (See page 21)
Within this field of research there does not appear to be a consistent measure of
attitudes towards sexuality and intellectual disability. A number of authors develop their own
questionnaires scales and often fail to report on detail about their development with some
lacking to even disclose the scale terms (e.g. agree/disagree) (Grieve, McFrann, Lindsay &
Culling, 2009; Evans, McGuire, Healy, & Carley, 2009; Parchomuik, 2012). Therefore it is
impossible to assess what raw data was interpreted to conclude positive or liberal attitudes.
Sexuality encompasses a wide range of experiences and expressions and is recognised
as being difficult to be ‘defined, understood or made operational’ (WHO 2006). This has led
to a wide range of definitions being employed and it is important to look at the detail of
scales and measures used within studies to ascertain which aspect of sexuality they focus on.
As discussed there is no consistent measure of attitudes towards sexuality used and often
authors develop their own measures (N=9). In comparing measures used in the reviewed
articles it is clear that some are more comprehensive and cover a wider range of definitions
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and aspects of sexuality than others. The Attitude to Sexuality Questionnaire utilised in 5
studies can be seen as comprehensively covering sexual behaviour, sexual rights, parenting
and self-control which is a strength to the studies that utilise it (Cuskelly & Bryde, 2004;
Cuskelly & Gilmore, 2007; Gilmore & Chambers, 2010; Meany-Taveres & Gadyia-Payne
2012). Other measures focus more heavily on specific areas of sexuality such as sexual
behaviour (Perception of Sexuality Questionnaire, Swango Wilson, 2008) or sex education
(Brown & Pirtle, 2008). Considering this we must take into account that some conclusions of
‘positive attitudes to sexuality’ are limited by the measures they employ. The breadth of
sexuality means it is difficult to capture a number of its aspects in one piece of research,
nonetheless, conclusions of a positive attitude towards the entirety of sexuality may be
regarded an overgeneralisation.
Therefore the methodological weaknesses of current attitude research employing
quantitative approaches weakens the strength of conclusions we are able to draw.
Qualitative Methodological Issues
Positive attitudes were also reported by studies employing the use of qualitative
methodology (Wilkenfield & Ballan, 2011; Yool, Langdon, & Garner, 2003) Both qualitative
papers extracted some similar themes including ‘sexuality as a common need/human right’.
Both papers utilised this theme to support their conclusion of positive attitudes. Wilkenfield
and Ballan (2011) and Yool (2010) also identified a theme surrounding ‘capacity to consent’
and highlighted this was a significant factor that participants considered when thinking about
sexuality issues. This qualitative approach to exploring attitudes helps give a broader insight
into some of the issues affecting and shaping participant’s attitudes which is lacking in some
quantitative research. Both papers satisfy a number of quality criteria as outlined in Spencer,
Ritchie, Lewis, and Dillion (2013) however neither paper satisfies reflexivity criteria. Both
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papers fail to identify the research team’s assumptions, values or philosophy and discuss how
this may impact their methodology or analysis.
Although the aim of qualitative research is not to produce generalised findings it is
important to note that both qualitative studies were conducted on very specific samples
(secure unit staff and teachers) and therefore only provide information on a narrow
population.
Characteristics
The literature indicated that attitudes were likely to vary in relation to a number of
participants characteristics including gender (Ryan & McConkey, 2000; Franco et al., 2012),
religion (Ryan & McConkey, 2000; Saxe & Flanagan, 2013), personality (Katz et al., 2000)
and training (Ryan & McConkey, 2000; Meaney Tavares & Gavidia-Payne, 2012). Table 4
provides details of papers contributing to this area of knowledge. In reviewing the conclusion
of each paper the characteristics of age and role were most commonly identified as
significantly affecting the attitudes respondents expressed.
Age
Age is consistently reported as a key factor in determining how positive individual
attitudes towards sexuality are (Karrelou et al., 2003; Cuskelly & Bryde, 2004; Cuskelly &
Gilmore 2007; Swango-Wilson, 2008; Wilkenfield & Balan, 2011; Meaney Tavares &
Gavidia-Payne, 2012). Cuskelly and Bryde (2004) compared the responses of parents, staff
and members of community to sexual expression in intellectual disability. They concluded
differences in attitudes were attributable to age differences within the sample. Younger
people were reported to hold significantly more positive attitudes than older people. A
strength of this research is the inclusion of respondents from different sectors; parents, staff
and the community, though its conclusions were limited by its focus on only those with
moderate level intellectual disability. However age as a significant factor in affecting
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attitudes has also been reported by Cuskelly and Gilmore (2007), Meaney Tavares and
Gavidia-Payne (2012), and Swango Wilson (2008) when considering staff attitudes to a range
of disability level. Although more recently this finding was contradicted by Saxe and
Flanagan (2013) it is likely this was as a result of an overall young student sample (mean age
28 years) with very few older participants. This sample bias resulted in age comparisons
being made within a much narrower age span.
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Table 4. Studies concluding the role of characteristics affect attitudes Author (Year) Sample Measure Key Findings
Bazzo (2007) Care Staff (N=216) SMRAI Staff role and education level did not affect staff attitudes Outpatient staff held most liberal attitudes (whether direct support or managerial role held)Staff with less contact with people with intellectual disability held more liberal attitudes
Franco (2012) Students (N=454) Developed Likert scale questionnaire
Females staff held more positive attitudes than male staff Students with frequent contact with people with a intellectual disability held more conservative and infantile attitudes
Grieve (2009) Care Staff (N=188) SAQ Staff in community settings hold most positive attitudes Residential nursing home staff hold most conservative attitudes – regardless of level of disability Residential nursing staff hold more conservative attitudes regarding homosexuality than community staffNursing staff with most experience did not hold the most liberal attitudes as expected
Cuskelly (2004) Care Staff (N=125)Parents (N=43)
Developed Likert scale questionnaire
Older respondents demonstrated less positive attitudes than younger respondentsParents more conservative attitudes however no difference in attitudes between groups when age difference accounted for
Saxe (2013) Care Staff (N=25) ATS, POS More conservative views were held by staff who were ChristiansEducation level effects attitude but unable to determine direction by post hoc analysis – assumption increased training relates to more liberal attitudes Years of experience did not affect attitudes
Ryan (2000) Care Staff (N=150) Developed Likert scale questionnaire
Males more in favour of sex education than femalesStaff with no religion favoured sexual expression more than religious staffStaff who attended training were more supportive of sexual expression than those without training No effect of age or qualification
Cuskelly (2007) General Public (N=261)
ASQ-ID, ASQ-GP Older respondents hold less accepting views of sexual rights, more negative about parenthood, sex behaviour and believed people with intellectual disability less able to control sexual urges
Meaney-Tavares (2012)
Care Staff (N=66) ASQ-ID, ASQ-GP Younger participants more positive about sexual rights of women with intellectual disabilityStaff who received training held more positive views on parenting and sexual behaviours Managers held more positive attitudes than direct support staffNo effect of employment setting, level of education or staff gender
Katz (2000) Students (N=135) Developed Likert scale questionnaire, California F scale
High authoritarianism personality trait links with negative attitudes Particularly regarding ability to judge and control sexual activities
Swango Wilson (2008)
Care Staff (N=85) POS, demographic questionnaire
Younger staff more accepting of sexual behaviours than older staff
Karellou (2003) General Public (N= 189)
GSAQ-ID Younger staff and those with higher levels of education have more contemporary attitudes Older people hold a more traditional view, acknowledge sexuality less and discriminate moreExperience, family, and employment status have no effects on attitudes
Wilkenfield (2011) Educators (N=10) Structured Interview Younger educators more comfortable with dealing with issues of sexuality than older educators
Evans (2009) Staff (N=153)Family Carers (N=153)
Developed Likert scale questionnaire, Case scenarios
More staff carers more confident that family carers Staff more positive attitudes towards intimate relationships and marriage than family carers
Key: SMRAI = Sexuality and Mental Retardation Attitudes Inventor; SAQ = Sexual Attitudes Questionnaire; ATS - Attitudes to Sexuality Scale; POS - Perceptions of Sexuality Scale; ASQ-ID = Attitudes to Sexuality questionnaire – Intellectual Disability; ASQ-GP = Attitudes to Sexuality Questionnaire – General Population; GSAQ-ID Greek Sexuality Attitude Questionnaire – Intellectual Disability
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Evidence that younger people hold more positive attitudes could reflect a greater
emphasis on liberalism and equality in contemporary society and a discourse of
permissiveness in relation to sexuality more generally. Younger people have grown up within
this ideology therefore being liberal fits with the current socially accepted framework of
being a ‘young person’ (Park, Bryson, Clery, Curtice, & Phillips (2013). Hence a cohort
effect exists where it is more comfortable for a young person to align themselves with liberal
positive attitudes. It could be considered older people have the choice to be more
conservative; they have the freedom to align themselves with past or present attitudes
whereas young people may feel pressured to fit with contemporary liberal viewpoints.
However older studies also report the division in attitudes of the old and young
(Brantlinger, 1983). Although not the same sample, the generation deemed young during
these studies are now the generation termed old in the current studies so it could be
hypothesised that this is more reflective of an ‘age’ or ‘lifestyle effect’ and that there is a
factor inherent in becoming older that affects attitudes. Attitudes are fluid and change over
time. Older staff with more experience are likely to have encountered more difficult issues
and experiences regarding sexuality over their career. Practical barriers and exposure to
incidents of sexual abuse may all decrease the likelihood of a person holding a positive
attitude. The impact of care staff having children may also be a factor that promotes a more
paternalistic protective stance on caring for others.
Therefore this literature informs us that attitudes vary according to age however we
currently lack an understanding of how or why attitudes change over time. Longitudinal
studies, although practically difficult, may give insight into the reason why and how attitudes
may change overtime.
Caring role
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Studies have examined how both role and care setting can affect a person’s attitude
towards sexuality and people with intellectual disability (Cuskelly & Bryde, 2004; Bazzo et
al., 2007; Evans et al., 2009; Grieve et al., 2009; Franco et al., 2012;
Meaney Tavares & Gavidia-Payne, 2012). Staff that work within residential settings or have
more frequent contact with people with intellectual disability report less liberal attitudes than
community staff (Bazzo et al., 2007; Grieve et al., 2009; Franco et al., 2012). It could be
hypothesised that this is reflective of the level of disability as those working in community
settings are likely to interact with individuals with mild intellectual disability as opposed to
those in residential setting who may offer more support to individuals with a severe
intellectual disability. Yet Grieve et al. (2009) reported residential staff consistently held less
liberal attitudes regardless of the level of disability considered.
Overall family carers appear to have less liberal attitudes when compared to staff
carers. This was characterised by family members being less supportive of relationships and
having less confidence in addressing sexuality issues (Evans et al., 2009). Similar to the
consideration of age these findings may reflect support workers and families exposure to
negative experiences and practical barriers regarding sexuality. In addition they are likely to
have a closer relationship with the individual with intellectual disability which is likely to
cause increased anxiety and risk aversive decision making.
Again the wider context around attitudes is important here. Families report less liberal
attitudes than staff; we tend to interpret this by looking for factors that cause families to be
less liberal. These findings may be more accurately perceived as the positive attitudes of staff
being over inflated due to a pressure to express positive attitudes. Staff are more likely to
have attended training (Evans et al., 2009) and have an obligation to hold attitudes in line
with organisational values. This results in staff being better able to reflect the ideological
shifts towards normalisation and person centeredness. Families however are rarely exposed to
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these pressures and so could be regarded as more open and honest in their responses.
Considering the interpretation of scale terms in drawing conclusions, Evans et al. (2009); a
key paper contributing to this knowledge, did not report the scale terms used in their
measures. Therefore it is difficult to ascertain from what data the less liberal attitudes of
family carers were concluded from.
Gender
Overall research indicates that positive attitudes are held in relation to the sexuality of
adults with intellectual disability however attitudes appeared to vary dependent on the gender
of the person with an intellectual disability. Studies that contributed to this area of knowledge
are detailed in Table 5. Historically it is believed people with intellectual disability have been
regarded as sexually innocent or sexually deviant with a belief that women predominantly fit
the asexual stereotype and men the deviant stereotype (McCarthy, 1999). Cuskelly and
Gilmore (2007) adapted the Attitudes to Sexuality Questionnaire (ASQ) (Cuskelly and Bryde
2004) in order to include questions addressing these hypothesised stereotypical views of
people with intellectual disability. Their findings challenged this hypothesis and concluded
there was no difference in attitudes expressed towards male and female sexuality within a
sample of the general population. A significant strength of this study was the large sample
employed (N=261). However a number of recent papers contradict these findings suggesting
perhaps the methodical limitations of the paper may have impacted their findings. Though the
study employed a large sample it was subject to significant social bias as respondents were
known to the researchers. The researchers were a group of approximately 30 university
students who each asked approximately 8 people who were known to them to complete the
questionnaire. It could be considered a young sample was employed as 45.6% of the sample
were aged under 30 years. In addition, a small amount of responses from older participants
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were excluded. Given the findings that age is a significant factor in attitudes the inclusion of
this data could have generated broader findings.
Gender discrepancies and prominent gender stereotypes have been reflected in further
quantitative research using the ASQ (Cuskelly & Bryde, 2004). More positive attitudes
appear to exist for women than men particularly for sexual rights, sexual behaviour and
sexual control. However less positive support is found for sexual freedom for women
indicating that perhaps women are still captured by the stereotype of innocence and a need
for protection (Meaney-Tavares & Gavida-Payne, 2012). Studies using the ASQ measure
consistently report a view that men have less self control than women (Cuskelly & Bryde,
2004; Cuskelly & Gilmore, 2007; Meaney-Tavares & Gavidia-Payne, 2012) again alluding to
the representation of men with intellectual disability as sexually dangerous or problematic.
As outlined above there are methodological issues that limit the strength of the conclusion of
attitude research employing the use of likert scales, however these inferences are supported
by qualitative research that clearly outlines these stereotypes are still active. Young, Gore and
McCarthy’s (2012) conducted a thematic analysis following interviews with 10 support staff.
They identified three key themes relating to the sexuality of men and women with an
intellectual disability. Women were perceived to be sexually innocent with little interest in
sex and high vulnerability to exploitation. Males were regarded as sexually driven with
frequent thoughts about sex. This divide in gender and attitudes to sexuality has also been
reported in other care settings (elderly: Elias & Ryan, 2011. Psychiatric: Ruane & Hayter,
2008. Physical disability: Esmail, Darry, Walter & Knupp, 2010) corroborating these
findings. The authors explicitly reported the number of contributing participants to each
subtheme adding to the quality of this paper (Spencer et al., 2013) and allowing further
interpretation by highlighting that a higher proportion of participant contributed to themes
relating to females than males.
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It appears that gender stereotypes still influence people’s attitudes towards sexuality.
Training is a key factor in supporting the development of more positive attitudes (Ryan &
McConkey, 2000). As a training deficit has been identified (Futcher, 2011) this is likely to
leave individuals lacking policy knowledge and more reliant on their own judgements,
perceptions and stereotyping. None of the studies reporting on gender differences offered
information on whether respondents had attended sexuality training. This would be an
interesting consideration to establish whether more stereotypical gender views are expressed
if staff have not received sexuality training.
The knowledge that these stereotypical attitudes may still exist is of importance as
they implicitly restrict our attitudes to sexuality by advocating a need for protection both to
and from.
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Table 5. Studies concluding the gender of a person with intellectual disability affects attitudes
First Author (Year)
Sample Measure Key Findings
Cuskelly (2007) General Public (N=261) ASQ-ID, ASQ-GP Overall the gender of a person with intellectual disability does not affect attitudes held.However males viewed as having more difficulty controlling sexual drive than females
Gilmore (2010) Staff (N=169)Leisure Staff (N=50)
ASQ-ID, ASQ-GP Males with intellectual disability viewed as having less self control than femalesLess sexual freedom for women with intellectual disability than general population
Meaney-Tavares (2012)
Care Staff (N=66) ASQ-ID, ASQ-GP More positive attitudes for sexual rights, control and behaviour for women with intellectual disability than men
Young (2012) Care Staff (N=10) Semi-structured Interview Women with intellectual disability are sexually innocent; included no interest in sex, more vulnerable and in need of protectionMen with intellectual disability are sexual driven; included thinking about sex more frequently, more openly expressing sexuality and being predatoryMotivations for intimate relationships; men focus on sexual gratification and women focus on emotional nonphysical aspects
Key: ASQ-ID = Attitudes to Sexuality questionnaire – Intellectual Disability; ASQ-GP = Attitudes to Sexuality Questionnaire – General Population
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Negative Attitudes
Six of the 20 studies reviewed did not conclude positive attitudes to sexuality existed.
Studies which concluded ‘negative’ attitudes or concluded attitudes with appropriate
synonyms such as ‘unfavourable’ and ‘detrimental’ contributed to this area of knowledge.
Table 6 details studies which concluded ‘negative’ attitudes.
Swango Wilson (2008) explored the appropriateness of sexual behaviours using the
POS questionnaire. Behaviours such as prolonged public kissing, anal sex and risky sex were
viewed as inappropriate for people with intellectual disabilities. Despite safe sex and
affection being viewed as appropriate the author concluded participants were ‘uncertain’
about the appropriateness of sexual behaviours for people with intellectual disabilities.
Interestingly they highlighted a significant difference in the appropriateness of sexual
behaviours for people with intellectual disabilities and themselves or peers, rating that sexual
behaviour was consistently more appropriate for themselves or peers (p<0.05).
Some studies reported the presence of more explicitly negative attitudes. Again using
attitude scale measures Katz et al. (2000) and Grieve et al. (2009) concluded ‘essentially
negative’ and ‘detrimental’ attitudes towards sexuality. Comparable to studies concluding
‘positive’ attitudes, the use of likert scales in these studies can be viewed as reducing the
validity of the papers conclusions.
Qualitative studies also reported the presence of negative attitudes with Young et al.
(2012) concluding the presence of unfavourable attitudes. The authors suggested these
appeared to correlate with traditional gender stereotypical views on sexuality as described
above.
As noted earlier in this review the breadth of sexuality issues and difficulties defining
sexuality can mean over generalised conclusions are made (Page 20). Despite concluding
overall positive attitudes to sexuality a number of studies reported the presence of negative
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attitudes to homosexuality (Gilmore & Chambers, 2010; Cuskelly & Gilmore, 2007; Cuskelly
& Bryde, 2004; Ryan & McConkey, 2000; Yool etal ., 2003). Only one study (Saxe and
Flanagan, 2013) reported no difference in attitudes towards heterosexual and homosexual
relationships but as previously noted this study used a young sample. Given the strong effect
age has on attitudes to sexuality it could be argued this is not a representative attitude and is
bias towards representing more liberal attitudes.
Similarly negative or less positive attitudes towards parenting are reported in Cuskelly
and Bryde (2004), Cuskelly and Gilmore (2007), Wilkenfield and Ballan (2011), and Franco
et al. (2012), despite the papers concluding overall positive attitudes to sexuality.
Therefore despite the majority of research concluding the presence of positive
attitudes there are aspects of sexuality which consistently generate more negative responses
and attitudes. Overlooking this information means we do not gain an in-depth understanding
as to the formation and structure of people attitudes and ideas towards sexuality and people
with intellectual disability.
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Table 6. Papers concluding ‘negative’ attitudes First Author (Year) Sample Measure Conclusion Grieve (2009) Care Staff (N=188) SAQ ‘detrimental’ attitudes,
‘conservatism’Katz (2000) Students (N=135) SMARI, Developed Likert scale questionnaire,
California F scale‘essentially negative’ attitudes
Swango Wilson (2008)
Care Staff (N=85) POS, demographic questionnaire ‘uncertain’
Parchomiuk (2012) MDT Staff (N=98) Developed Likert scale questionnaire Negative attitudesKarellou (2003) General Public (N= 189) GSAQ-ID Less contemporary
attitudes Young (2012) Care Staff (N=10) Semi-structured Interview ‘unfavourable ‘ attitudes
Key: SMRAI = Sexuality and Mental Retardation Attitudes Inventor; SAQ = Sexual Attitudes Questionnaire; POS - Perceptions of Sexuality Scale; GSAQ-ID Greek Sexuality Attitude Questionnaire – Intellectual Disability
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Discussion
This review aimed to explore our current knowledge of attitudes towards the topic of
sexuality and intellectual disability; including what attitudes currently exist and what factors
may affect the attitudes people hold. The review reveals a large proportion of current attitude
research concludes the presence of positive attitudes toward sexuality and intellectual
disability. Further that the characteristics of participants (e.g. age, role) and people with
learning disabilities (e.g. gender) can affect the attitudes held about this topic. Some negative
and uncertain attitudes remain apparent in the literature and there are certain aspects of
sexuality such as parenting that continued to be subject to more negative attitudes.
Methodological Considerations
Throughout the review a number of methodological weaknesses have been discussed
predominantly focussing on attitude measures. Quantitative studies have routinely employed
the use of likert scale measures. From this research we can only draw limited conclusions due
to methodological weaknesses. Attitude scales capture a reflection of one contextual moment
and are likely to be influence by the participant’s interpretation of the scale terms and
personal experience. Participants’ responses are then further interpreted by the researcher in
order to draw a general conclusion. This interpretation process can mean the context and
detail of a person’s attitudinal stance is not accurately reflected. Consequently, conclusions
can become over generalised and risk losing the participants intended meaning (Potter &
Wetherall, 1987).
Within the reviewed literature authors employed a range of likert scale measures and
many developed their own. Several studies lack in depth reporting on the development,
reliability and validity of these measures. Further the content on questionnaires varied
significantly across papers with some covering the topic of sexuality more broadly than
others. Again this led to over generalised conclusion to the entirety of sexuality when some
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measure focussed heavily on specific aspects of sexuality such as sex education or sexual
behaviours.
Qualitative studies move forward in providing a more detailed understanding of
attitudes and nuances that exist (e.g. Young et al., 2012)
Participant characteristics are consistently identified as affecting the attitudes
expressed towards sexuality. This means sample biases can have a significant effect on the
conclusions. Several studies appear to employ young student samples which may seriously
limit the validity of their conclusions given the significant effect of age on the liberalism of
attitudes.
These methodological considerations within this research area limit the clarity and
confidence of our knowledge of this area.
Utility of Attitude Research
It is widely acknowledged that the feelings and behaviour of carers are central in
determining the opportunities and experiences that people with intellectual disabilities have
access to (Brantlinger, 1983; Brown & Pirtle, 2008; Swango-Wilson, 2010). In practice this
means carers hold an important facilitating role with regards to sexuality as they are often
responsible for determining access to sex education, sexual expression and experience
(Bazzo, Nota, Soresi, Ferrari, Minnes, 2007; Swango-Wilson, 2010). With this in mind a
researchers have focussed on exploring the attitudes people hold about sexuality and people
with intellectual disabilities to gain insight into the ways in which they are supported.
An inherent assumption is made that those who hold positive attitudes will behave in
a way which supports and promotes sexuality whereas those holding negative views will
demonstrate the opposite. This is a simplistic view and research has repeatedly demonstrated
inconsistencies between attitudes and behaviour with research indicating only 10% of
behaviour can be accounted for by attitudes (Wicker, 1971). Theoretical models have
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attempted to explain the attitude behaviour link (Theory of Planned Behaviour. Ajzen, 1988)
by considering the role of subjective norms and perceived behavioural control in determining
behaviour.
‘Perceived behavioural control’ refers to a person’s perception as to the ease or
difficultly of carrying out behaviour; this may include an assessment of their skills,
knowledge, support or access to resources. This is of particular interest to consider given that
the literature highlights a lack of policy knowledge and a lack of training (Christian et al.,
2001; Futcher, 2011), the absence of these are both likely to reduce a person’s perceived
behavioural control and thus the likelihood of them acting in a way which is congruent with
their attitudes. Therefore even when positive attitudes are established people may have
difficulty in using them to guide their practice due to a lack of support, guidance and skills
empowering them to feel in control of their actions.
Rushbrooke, Murray and Townsend (2014) conducted a meta-synthesis focussing on
the difficulties experienced by caregivers in regards to sexuality. This research begins to fill
the gap and extract some of the reasons why people may act differently to their intentions or
attitudes. One of the themes extracted ‘fear and uncertainty’ highlighted the lack of
confidence caregivers had in dealing with issues of sexuality therefore despite wanting to
support sexuality caregivers may be restricted by their confidence in dealing with issues.
These factors suggest we need to move beyond measuring attitude to extend our
knowledge in this area. We need to explore staff experiences and responses to sexuality in a
more complex way to develop our knowledge about how people with intellectual disabilities
sexuality needs are being supported.
‘Difference’
A distinction exists when respondents are asked to score attitudes in relation to
sexuality and people with intellectual disability, themselves and/or their peers (e.g ASQ-ID
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and POS scales). A higher level of positive attitudes and acceptance is reported for self/peers
than people with intellectual disability in relation to public affection, sex (Swango Wilson,
2008) and sexual freedom (Cuskelly& Gilmore, 2007; Gilmore & Chambers, 2010). Despite
the promotion of normalisation and equality this demonstrates that a fundamental ‘them and
us’ division exists. The existence of this view in the intellectual disability literature reflects
that we still view people with intellectual disability as ‘different’. This was also a theme
identified in Rushbrooke et al. (2014) where their reviewed literature demonstrated that
despite caregivers acknowledging similar sexual needs and development for people with
intellectual disability they recognised that supporting this was more complex and problematic
due to a person having an intellectual disability.
Evans et al. (2009) propose that it is important to acknowledge a difference between
people with and without intellectual disability and consider that the ideology of normalisation
sees us measuring sexuality by the norms of society. The norms of society can sometimes not
be relevant or achievable for people with intellectual disabilities and we need to embrace
thinking about sexuality differently. Due to this complexity, attitude measures may again fail
to capture a true representation of our thoughts about sexuality and people with intellectual
disability.
Further reflecting the notion of ‘difference’ is the language we use to describe
attitudes. Defining attitudes as ‘positive’ may seem logical as it gives some meaning,
however it is important to compare our use of language to sexuality and intellectual disability
and sexuality and people without intellectual disability. Why are we calling these attitudes
positive? We are unlikely to refer to our attitudes to our own or our peers sexuality as
‘positive’ yet we are keen to do so when describing attitudes to sexuality and people with
intellectual disability.
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Future Research
Appearance is one of our most overt expressions of sexuality (Weitz, 1998) yet none
of the reviewed articles reported attitudes on this area of sexuality and no papers were
identified during the literature search process. A number of aspects of sexuality can be
conveyed through appearance including sexual intentions, masculinity and femininity. This
can be expressed through appearance in a number of ways included, body image, clothing,
make up etc. Future research on people’s attitudes towards appearance and the ways in which
they support people with intellectual disabilities with this aspect of their sexuality would add
to our current knowledge base on sexuality and intellectual disability.
This review suggests attitudes research provides limited insight into the topic of
sexuality and people with intellectual disability. Attitudes are difficult to reliably identify and
capture. Further they are limited by their ability to give insight into behaviours, for example;
how people deal with sexuality issues, how they approach, promote or protect a person’s
sexuality. Considering this it may be more useful to assess the behaviour of carers more
directly. Some research (Christian et al., 2001; Evans et al., 2009) employed the use of case
examples in attempt to gain insight into the hypothetical actions of carers however the
indication that emotional factors such as confidence and anxiety (Rushbrooke et al., 2014) are
a barriers to people addressing sexuality issues means such hypothetical scenarios may lack
ecological validity and may be subject to more socially desirable responses. Direct
observation of carer’s practices may be more informative but can pose practical difficulties.
Alternatively, interviews with caregivers focussing on the ways in which they offer support in
their daily practice may give more detailed insight into their perceptions of sexuality.
A qualitative approach that allows exploration of the topic in a more complex way
that enables insight into how staff operationalise their attitudes in practice may extend our
knowledge of this topic area. Given the continued recognition that ‘difference’ is a factor in
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peoples thinking about sexuality and people will intellectual disability qualitative based
research such as IPA may allow further exploration of this concept and its impact on people
thinking and practice.
Conclusion
This review identified that positive attitudes are dominant in the literature and
attitudes continued to be influenced by the characteristics of the respondent and person with
intellectual disability.
Methodological weaknesses in this research area mean it is difficult to draw a unified
conclusion as to what attitudes represent and there is risk of overgeneralization.
In order to further extend our knowledge of this topic it is suggested qualitative
methods should be employed that enable in depth exploration of the topic area. In particular a
focus on people’s behaviour and responses to sexuality issues to determine how they
operationalise their attitudes and values around sexuality in order to gain a better picture of
the ways in which people with intellectual disabilities sexuality are supported.
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Appendix A: Guidelines for Authors
1. General guidelines Manuscripts are accepted in English. Macquarie Dictionary spelling and punctuation
are preferred. It is Australian convention to use “-ise” endings rather than “-ize” (as in “organise”) and “-our” endings rather than “-or” (as in “behaviour”).
Please use double quotation marks, except where “a quotation is ‘within’ a quotation”. Long quotations of 40 words or more should be indented without quotation marks.
The suggested maximum length for each type of submission is: Full-length Articles – 7000 words; Brief Reports and Case Reports – 3000 words; Data Briefs and Opinions & Pespectives – 2000 words. Manuscripts exceeding these limits may be accepted depending on the importance and complexity of the content. Please note that word count includes references, tables, and figures.
Manuscripts should be compiled in the following order: title page; abstract; keywords; main text; acknowledgements; references; appendices (as appropriate); table(s) with caption(s) (on individual pages); figure caption(s) (as a list).
Abstracts of 150 words are required for all manuscripts submitted. Each manuscript should have 3 to 6 keywords . Search engine optimization (SEO) is a means of making your article more visible to
anyone who might be looking for it. Section headings should be concise. All authors of a manuscript should include their full names, affiliations, postal
addresses, telephone numbers and email addresses on the cover page of the manuscript. One author should be identified as the corresponding author. Please give the affiliation where the research was conducted. If any of the named co-authors moves affiliation during the peer review process, the new affiliation can be given as a footnote. Please note that no changes to affiliation can be made after the manuscript is accepted. Please note that the email address of the corresponding author will normally be displayed in the article PDF (depending on the journal style) and the online article.
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Biographical notes on contributors are not required for this journal. Please supply all details required by any funding and grant-awarding bodies as an
Acknowledgement on the title page of the manuscript, in a separate paragraph, as follows:
o For single agency grants: "This work was supported by the [Funding Agency] under Grant [number xxxx]."
o For multiple agency grants: "This work was supported by the [Funding Agency 1] under Grant [number xxxx]; [Funding Agency 2] under Grant [number xxxx]; and [Funding Agency 3] under Grant [number xxxx]."
Authors must also incorporate a Disclosure Statement which will acknowledge any financial interest or benefit they have arising from the direct applications of their research.
JIDD uses people-first language. The general form person with a disability is used rather than disabled person, so descriptions such as a boy with Down syndrome and adults with spina bifida are acceptable. As normal has multiple meanings, more precise terms such as children without a hearing impairment should be used. Generic descriptions such as students, participants, and adults are preferred to the term
142
subjects. JIDD uses the term intellectual disability rather than mental retardation or learning disability. JIDD prefers the singular disability rather than the plural disabilities. The use of disabilities should be confined to instances where authors are referring to individuals with multiple disabilities or where this term is being used in a quote from another source.
Authors must adhere to SI units . Units are not italicised. When using a word which is or is asserted to be a proprietary term or trade mark,
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2. Style guidelinesAuthors should format their manuscript as follows: (a) Line spacing: Double-space between all text lines of the manuscript, including the title, headings, footnotes, quotations, references, and figure captions. Single-spacing or one-and-a-half spacing may be used in tables or figures.(b) Margins: Leave uniform margins of 2.54 cm or 1 inch at the top, bottom, left, and right of every page. Please allow 1.25 cm or ½ inch for headers and footers.(c) Alignment: Left align text and leave the right margin ragged, or uneven.(d) Typeface and font size: The preferred typeface for APA publications is Times New Roman, with 12-point font size.(e) Paper size: A4 (Height x Width: 297 x 210 mm or 11.7 x 8.3 in) (f) Spacing after punctuation: Space once after punctuation.ReferencingAuthors are responsible for the accuracy of all information in their reference list and must refer to the Publication Manual of the American Psychological Association (6th ed.) for guidelines for referencing and citation.Please start the reference list on a new page. Use hanging indents measuring 1.27 cm (or ½ inch) to construct the reference list. Do not use tabs, the space bar, or paragraph returns to create hanging indents.Each reference cited in text must also appear in the reference list, and vice versa. Please ensure that the in-text citation and reference in the reference list are identical in terms of year of publication and spelling of author names.Where digital object identifiers, or DOIs, for publications exist, please include these as part of the reference. Refer to pages 188–192 of the Publication Manual for further information on DOIs.Remove all Endnote codes and active links prior to uploading your manuscript to Manuscript Central.
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Data BriefsThis section contains succinct summaries of significant current data (often national data) on trends in demographics, service provision, expenditure, and other issues. No abstract is required.
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Opinions & PerspectivesThis section provides a forum for discussion and debate about important current issues, innovations and policy perspectives in the form of short, well-reasoned, clearly written commentaries. No abstract is required.
Description of the Journal’s reference style. Guide to using mathematical scripts and equations.
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Clinical Experience
Summary of Clinical Experience
September 2013 – September 2016
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Summary of Clinical Experience
Adult Mental Health Assessment and Treatment Service
During this placement I completed psychological assessments, formulations and
interventions with adults presenting with mental health difficulties. This included depression,
anxiety, obsessive compulsive disorder and psychosis. I gained experience of developing
complex longitudinal formulations of mental health difficulties using cognitive behavioural
and systemic frameworks. I became familiar with completing risk assessments and
developing risk management plans. I co facilitated team formulation sessions and completed
a service evaluation of staff experiences of team formulation. During this placement I worked
as part of a multidisciplinary team using the Care Programme Approach (CPA).
People with Learning DisabilitiesCommunity Learning Disability Team and Inpatient Mental Health Service
During this placement I completed psychological assessments, formulations and
interventions with adults with a learning disability who were presenting with mental health
difficulties. This included depression, anxiety, and obsessive compulsive disorder. During
this placement I worked therapeutically with a range of models including CBT, Narrative and
Systemic. I completed a number of cognitive assessments during this placement including
dementia assessments. I gained experience of indirect interventions working with staff teams
managing challenging behaviour. I developed my skills at working creatively, adapting my
communication style to meet the individualised needs of clients e.g. using social stories.
To support service development, I developed and delivered staff training sessions on
person centred planning and supporting clients to keep safe. Additionally, I re designed and
implemented new person centred planning tools.
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Child and AdolescentChild and Adolescent Mental Health Service
During this placement I completed psychological assessments, formulations and
interventions with children who were presenting with mental health difficulties. This included
depression, anxiety, eating disorders and obsessive compulsive disorder. During this
placement I extended my systemic formulation skills. I gained experience of family therapy
taking on a role in the reflective team. I used a range of skill to engage children and young
people including play and art. To support service development, I developed and facilitated a
workshop for parents on understanding mental health difficulties. I had the opportunity to
observe the ADOS and completed school observation as part of developmental disorders
assessment process. I worked indirectly with families and schools.
Specialist – NeuropsychologyAcute Stroke Service and Post-Acute Rehabilitation Service
During this placement I completed neuropsychological assessment and formulation of
cognitive difficulties for adults following a stroke or brain injury. This included
neuropsychological test selection, administration, scoring, interpretation and
recommendations. I completed cognitive rehabilitation work supporting people to use
strategies to compensate for their impairments. I worked therapeutically with individual and
families’ to support them in their adjustment to disability. During this placement I had the
opportunity to co facilitate group work including a memory group and adjustment group. I
also gained experience of observing and completing capacity assessment.
This placement enabled me the opportunity to work on an acute medical ward and develop
skills working with and consulting to a medical MDT.
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Older Adults Memory Assessment Service
During this placement I completed neuropsychological assessments in order to assess
for neurodegenerative disease. This included pre and post diagnostic counselling. I worked
therapeutically with individuals and their families post diagnosis to support them in their
adjustment to diagnosis. As part of this work, I co facilitated a therapeutic living well with
dementia group building on my skills at managing group therapy and dynamics. During this
placement I had the opportunity to observe a range of clinicians to gain an understanding of
diagnostic assessment processes. I completed staff training on specific dementias.
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Assessments
Overview of Academic Assessments
September 2013 – September 2016
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Table of Assessments Completed During Training
Year I Assessments
ASSESSMENT TITLE
WAIS-III Short report of WAIS-III data and practice administration
Service-Related Project Staff experiences of attending complex case team formulation meetings
Practice Case Report Assessment and formulation for a man in his thirties experiencing obsessive compulsive symptoms
Problem Based Learning Reflective Account
Relationship to change
Major Research Project Literature Review
Attitudes towards the sexuality of people with learning disabilities
Adult Case Report 1 CBT assessment and intervention for a man in his thirties experiencing obsessive compulsive symptoms
Adult Case Report 2 Formulation and relapse prevention with a man in his fifties following depression and psychosis
Major Research Project Proposal
How do support staff understand their role in supporting the sexual needs of people with learning disabilities?
Year II Assessments
ASSESSMENT TITLE
Professional Issues Essay
‘Physical contact with clients/service users is never acceptable’. Discuss this statement in the context of your practice with clients across the lifespan and specialties’
Problem Based Learning – Reflective Account
The Stride family: a complex clinical case
People with Learning Disabilities Case Report
Cognitive Assessment with a women in her thirties
Personal and Professional Learning Discussion Group Process Account
Personal and Professional Learning Discussion Group Process Account
Child and Family Oral Presentation of Clinical Activity
Developing as a clinical psychologist: integrative formulation skills
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Year III Assessments
ASSESSMENT TITLE
Major Research Project Empirical Paper
How do support staff understand their role supporting the sexuality of people with learning disabilities
Personal and Professional Learning – Final Reflective Account
On becoming a clinical psychologist: A retrospective, developmental, reflective account of the experience of training
Specialist Case Report Psychology input for a man in his fifties during admission to an acute stroke ward
151
