Adults With Intelectual Disability Discuss Loneliness

I Get by with a Little Help from my Friends:Adults with Intellectual Disability DiscussLoneliness1

Keith R. McVilly*, Roger J. Stancliffe*, Trevor R. Parmenter* and Rosanne M. Burton-Smith

*Centre for Developmental Disability Studies, University of Sydney, Sydney, Australia, School of Psychology, University of

Tasmania, Hobart, Australia

Accepted for publication 10 May 2005

Background This study explored loneliness as experi-

enced by adults with intellectual disability, with inter-

mittent to limited support needs.

Method A measure of loneliness was piloted, and qualit-

ative techniques used to develop a greater understand-

ing of the participants experience.

Results The Loneliness Scale proved valid and reliable

and the participants reported loneliness in ways com-

parable with the general population.

Conclusions The findings demonstrate the effectiveness

of combining quantitative and qualitative techniques

to enhance understanding of peoples perspective

when developing support systems to promote their

quality of life. Based on participant perspectives, rec-

ommendations are made concerning the issues and

types of support families and professionals could consi-

der when seeking to assist people with intellectual dis-

ability address loneliness. Further investigation of the

effects of differing educational and vocational oppor-

tunities on peoples post-school social networks

appears warranted.

Keywords: friendship, intellectual disability, loneliness,

qualitative analysis, quality of life, relationships

Introduction

Stable and rewarding interpersonal relationships are

arguably the single most important factor influencing a

persons quality of life (Kennedy & Itkonen 1996). In

support of this, the literature documents how relation-

ships provide practical aid, emotional support, informa-

tion, assistance with decision making, and opportunities

to broaden existing support networks (Hughes 1999), as

well as important safeguards against stress and psycho-

logical illness (Duck 1991). The literature further docu-

ments specific mental and physical health benefits

associated with the development of interpersonal net-

works, and the adverse consequences associated with

having poor social networks and the experience of lone-

liness (Lynch 1977; Bloom et al. 1978; Flynn 1989; Stan-

feld 1999).

Service providers and policy makers need to be con-

scious that, for many people with disability, significant

interpersonal relationships are rare or non-existent

(Fleming & Stenfert-Kroese 1990; Blum et al. 1991;

Rapley & Beyer 1996; Amado 2004; Duvdevany & Arar

2004). Yet, opportunities for people with disability to

develop and maintain personal relationships are impor-

tant to the people themselves (Halpern et al. 1986;

McVilly 1995; Froese et al. 1999; Johnson 2000; Knox &

Hickson 2001; Read 2002), as well as to their families

and advocates (Strully & Strully 1985). Furthermore,

loneliness and the lack of or disruption to peoples net-

works could be significant factors contributing to psy-

chopathology (e.g. depression and anxiety), manifest as

challenging behaviour (Lunsky & Havercamp 1999;

McVilly 2002).

To put the experiences of people with intellectual dis-

ability into perspective, and to highlight the potential

for loneliness to be a significant factor influencing their

quality of life, Katz & Yekutiel (1974) reported that 61%

of graduates from an adult training programme had no

1This paper is based on the Doctoral Research of Keith R. McV-

illy, and partly funded by an Australian Postgraduate Award,

in the Faculty of Medicine, University of Sydney.

Journal of Applied Research in Intellectual Disabilities 2006, 19, 191203

2006 BILD Publications 10.1111/j.1468-3148.2005.00261.x

friends. Hill et al. (1984) reported a special relationship

to be evident for only 36% of people in an institutional

facility and for only 58% of those in community resi-

dences. Barber & Hupp (1993) reported people living in

smaller groups to have larger social networks and con-

cluded that the size of the social networks of those liv-

ing in smaller groups was comparable with the size of

social networks in the general population. However,

Krauss et al. (1992) reported that among adults with

intellectual disability living at home, 42% of participants

had no friends outside of their immediate family (here,

although the absence of non-familial relationships need

not automatically imply loneliness). Similarly, Petrovski

& Gleeson (1997) reported that while 73% of participants

in competitive employment indicated that they had

friends at work, 97% of these indicated that they did not

see any of their work-friends outside of the work place.

Furthermore, of the participants who indicated that they

had friends outside of work, the majority of people

reported seeing their non-work friends only infre-

quently. These findings are in contrast to the experience

of people in the general population where, in excess of

70% of time spent socializing is reported to be with

friends, rather than with family or extended family

members [Australian Bureau of Statistics (ABS) 1997].

Furthermore, Emerson & McVilly (2004) reported find-

ings from a large population-based study which indi-

cated overall low levels of friendship activities for

adults with intellectual disability (e.g. having a friend

visit their house or visiting a friends house) and that

most activities with friends occurred in public places,

with little or no opportunity for privacy. These findings

also suggested that the settings in which participants

lived were more significant determinants of the form

and content of friendship activities, than the partici-

pants personal characteristics (i.e. skills and behav-

iours).

It is therefore evident that, although many people

with developmental disability are at least more physic-

ally integrated and have the opportunity for activities in

their neighbourhoods and towns, most are still not

really part of their communities. The majority of these

people have very few, if any friends (Amado 1993, pp.

279280). Do these individuals experience social isola-

tion and, if so, does this give rise to an experience of

loneliness as it is understood in the general population?

If loneliness is a consequence, how do people with intel-

lectual disability conceptualize this and what would

they like to do about it?

Peplau & Perlman (1982) have defined loneliness in

terms of an unpleasant experience arising from insuffi-

cient social interaction. They further assert that it is

essentially a personal (subjective) experience, indepen-

dent of either the quantity or duration of social interac-

tion. For this reason, loneliness can be understood to

reflect a discrepancy between an individuals expecta-

tions concerning relationships and his or her interpret-

ation of their own social experience. Andersson et al.

(1987), consistent with Weiss (1973) and Russell et al.

(1984), have defined loneliness as two separate, but

inter-related dimensions. The first is the social dimen-

sion, arising as a result of the persons experience of

deficiencies in his/her social network and his/her lack

of social integration (i.e. peer group acceptance and

involvement in collective activity). The second is the

emotional dimension, arising from the persons per-

ceived lack of meaningful and rewarding socio-emo-

tional bonding with others, on a more intimate level.

Weiss (1973) questioned if the experience of loneliness

was a meaningful and measurable construct for those at

the earlier stages of socio-emotional development. How-

ever, a number of studies have since established it to be

a construct that can be measured reliably in children as

young as 812 years of age (Asher et al. 1984; Asher &

Wheeler 1985; Marcoen & Brumagne 1985). Furthermore,

Cassidy & Asher (1992) reported in a study of children

aged 57 years, 93% of participants were able to des-

cribe feelings of both aloneness and sadness in

response to the question Do you know what being

lonely means?, with the remaining 7% providing a sat-

isfactory description of aloneness, but not sadness.

Williams & Asher (1992) reported success in measur-

ing loneliness in a study involving 62 matched pairs of

students with and without intellectual disability, 8

12 years of age. So too, Chadsey-Rusch et al. (1992)

reported that it is possible to obtain a reliable measure

of loneliness for adults with mild to moderate intellec-

tual disability. Similarly, Petrovski & Gleeson (1997),

using standardized measures, reported that adults with

mild intellectual disability did not appear to experience

difficulties relating their experiences of loneliness. They

found a moderate negative correlation between self-

reported measures of loneliness and job satisfaction.

Heiman & Margalit (1998) reported students aged 11

16 years with mild intellectual disability to self-report

higher levels of loneliness than their peers without dis-

ability. Heiman (2001) further reported an association

between self-reported ratings of loneliness and self-

reported ratings of depression.

Although it appears possible to use standardized

instruments to measure loneliness in people with intel-

lectual disability, such an approach is limited in that it

192 Journal of Applied Research in Intellectual Disabilities

2006 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 19, 191203

superimposes on the assessment process the resear-

chers preconceived ideas of how the participants will

conceptualize and describe their experience. This quanti-

tative approach is useful for testing established theory.

However, standardized questionnaires alone are insuffi-

cient when seeking to explore and explain the lived

experience of participants (Barnes 1992; Schwandt 1994;

Rice & Ezzy 1999). Conversely, open-ended or semi--

structured interviews alone, although having the poten-

tial to generate rich narrative data, can be more

confusing than clarifying, especially where respondents

have limited expressive communication skills (Biklen &

Moseley 1988). Therefore, the integration of quantitative

and qualitative techniques, as is commonly the practice

in a clinical setting, is proposed as an appropriate

research methodology (ODay & Killeen 2002). Further-

more, harnessing qualitative techniques is in keeping

with the growing recognition of the importance of lis-

tening to people with disability relate their own experi-

ences, as a means of developing an understanding of

those experiences in order to better live and effectively

work with them (Lowe 1992; McVilly 1995; Goodley

1996; Azmi et al. 1997; Kitchin 2000; Knox et al. 2000;

Knox & Hickson 2001; Heenan 2002; Pearson et al. 2002;

Brantlinger et al. 2005).

This study, part of a wider investigation on the

friendship aspirations and experiences of people with

intellectual disability (McVilly 2004), explored the con-

struct of loneliness as experienced by participants in

post-secondary school education and employment. It

involved both piloting a Loneliness Scale and harnessing

qualitative techniques to identify factors that could

influence or explain the participants experience of lone-

liness. It was proposed that assessing and developing an

understanding of the participants experience would

provide insight and guidance for family members and

service providers, assisting them to develop more

appropriate and effective strategies to promote a quality

life for people with intellectual disability, including

meaningful and rewarding relationships.

Method

Participants

Participants consisted of a purposive sample of 22 males

and 29 females, aged 1652 years (mean (M) 25 years,2 months). All had intellectual disability with limited

to intermittent support needs; i.e. life-long, requiring

episodic to regular planned support with the execution

of identified conceptual, social or practical skills in

specific life domains (Luckasson et al., 2002). This was

established with reference to a combination of individual

records and by assessment using the Scales of Inde-

pendent BehaviourRevised (Bruininks et al. 1996). All

were verbal and none had a physical or sensory disabil-

ity. Thirty-nine lived with their parents, six in supported

accommodation and six in their own home, although in

receipt of regular support. Forty-two attended Technical

And Further Education (TAFE) college programmes

designed for adults with intellectual disability and nine

worked in supported employment. All volunteered in

response to an invitation to participate via their class

teacher or work supervisor. There were no volunteers

who required exclusion from the current study (e.g.

because of their inability to participate in the assess-

ment).

Instrumentation

Participant data were collected in two ways: a Loneli-

ness Scale was administered to all 51 participants; and a

sub-set of participants also undertook a semi-structured

interview, developed as part of the wider study of

friendship issues. Moreover, proxy data were gathered

as part of the wider study, using a background ques-

tionnaire for parents, teachers and work supervisors.

The Loneliness Scale

The original version of the Loneliness Scale was devel-

oped for use with children (Asher & Wheeler 1985). The

current adaptation used the 15 core loneliness questions.

However, items were modified to read as first person

statements and to better reflect the adult status of the

respondents. For example, Do you have friends at

school? was changed to read I have friends. The

response scale was modified, extending the original

three-point scale (Yes, No or Sometimes) to a five-point

scale, (Never, Rarely, Sometimes, Usually and Always).

In addition, the response format was modified from a

verbal report, to incorporate a card-sort exercise and a

visual analogue scale. These modifications were made to

enhance reliability, by focusing respondent attention on

single items and by making the decisionresponse task

more tangible (Dattilo et al. 1996).

The card-sort exercise incorporated a visual analogue

scale based on five categories, with each of the descrip-

tions augmented by ticks (Never no tick toAlways XXXX). At each of the five points, the A4landscape sheet was perforated by a metal file fastener,

providing a spike on which response cards (hole-

Journal of Applied Research in Intellectual Disabilities 193


punched at one end) could be placed. The presentation of

the loneliness items on individual cards was preceded by

seven training cards. The training items were designed to

both teach the respondents how to use the scale and to

identify any participants whose scale-based responses

could not be considered reliable. Each category was

explained to the respondent: e.g. this means what I read

NEVER sounds like you. Then, for each item, therespondent was asked How often does this sound like

you?. The card was then read aloud and handed to therespondent. Respondents were cued with a consistent

moving hand gesture to select one of the response categ-

ories. Where respondents exhibited difficulty, two forms

of assistance were offered; first, verbatim repetition of the

question; and second, where they still exhibited difficulty,

a standard rephrasing, How much does this sound like

you; how many ticks would you give it: ? (Sigelmanet al. 1983). All participants demonstrated competence in

the use of the scale, consistently providing appropriate

responses to the training items.

Loneliness items were scored on a scale of 0 (Never)

to 4 (Always). Consistent with the original scale, five

items were phrased such that higher ratings were indic-

ative of loneliness (e.g. I feel all alone), and 10 items

were phrased such that higher ratings were interpreted

to be more positive, i.e. indicative of less loneliness (e.g.

It is easy to make new friends). Prior to conducting the

analysis, the 10 positive items were reverse-scored. Sub-

sequently, possible total scores ranged between 0 (never

lonely) and 60 (always lonely).

Semi-structured interviews

The semi-structured interview was developed as part of

the wider study, based on issues drawn from both the

literature concerning friendship for adults in the general

population and the findings of a series of focus groups

consisting of adults with intellectual disability (McVilly

2004). There were seven key areas of questioning: perso-

nal profile and demographics (confirmed by parents,

teachers and work supervisors); daily activities and

occupation; personal networks; contact with people con-

sidered a friend; background to individual friendships;

description of a best friend; reflections on friendship

experiences overall, including loss and/or absence of

friendships.

Procedures

Approval was provided by both the University of Sydney

Human Research Ethics Committee and the University of

Tasmania Human Research Ethics Committee. Partici-

pants at TAFE colleges were contacted via the Teacher

Consultant in disability at each of five colleges, and parti-

cipated as volunteers during class-time. Participants in

supported employment were approached via their

employer and given an opportunity to volunteer during

work time.

All 51 participants completed the Modified Loneliness

Scale. Of these, 16 (31%) participants volunteered to

repeat the questionnaire, approximately 2 weeks later.

None reported any significant adverse life events in the

intervening period. All respondents were then invited to

participate in an interview about friendship issues. Sub-

sequently, 32 (63%) volunteered for the in-depth inter-

view. For each participant, interviews were conducted

at a location with which they were already familiar (e.g.

TAFE college or workplace), over two to three weekly

sessions of approximately 1 h each. Significant others

(parents, teachers and work supervisors) were also

asked if, in their opinion, the participant was lonely

and/or wanted to have more friends. Their responses

were recorded on an informant questionnaire, conduc-

ted as part of the wider study of friendship issues.

Data were analysed using both deductive and induct-

ive techniques. First, participants Loneliness Scale data

were analysed using Statistical Package for the Social

Sciences (SPSS 2003). Second, criterion sampling, based

on the quantitative analysis, was then used to identify

two sub-groups of participants (most lonely and least

lonely). Interview data from the two sub-groups were

compared and analysed using the Constant Comparat-

ive Method (Lincoln & Guba 1985). The themes were

then used to develop both a descriptive and an explana-

tory narrative about the phenomenon of loneliness

from the participants perspective. Direct quotations

were used to elucidate the themes, with minimal para-

phrasing used only in the interests of clarity. The the-

matic interpretations were in turn validated with

reference to a focus group of adults with intellectual dis-

ability (McVilly 2004).

Results

The Modified Loneliness Scale

Psychometric properties of the scale

Participants scores on the Modified Loneliness Scale

ranged between 0 and 47 (M 18.04; SD 10.41). Reli-ability of the scale total score was first explored using

split-half (odd/even) reliability analysis, a measure of



internal consistency. The Guttman split-half coefficient

(an estimate of reliability that does not assume the two

parts are of equal length or of equal variance) indicated

a to be 0.78 (P < 0.05). Reliability of the scale wasfurther explored by applying a test/re-test model for a

sub-set of 16 total scores, from those participants who

had undergone the repeated administration. A paired-

samples t-test indicated that there was no significant dif-

ference between participants total scores on the first

(M 17.69; SD 8.43) and those on the second admin-istration [M 18.69; SD 10.13; t(15) )0.87, P 0.40;Pearsons r-value was 0.89, P < 0.01]. Finally, where

proxy reports were available (i.e. from parents, teachers

and work supervisors), there was a significant difference

in the Loneliness Scale scores for participants identified

by proxies as lonely (M 26.71; SD 11.03) and thoseidentified as not lonely (M 16.86; SD 5.95,t(19) )2.69, P 0.01). Additional confirmation of theecological validity of the scale was evident in the analy-

sis of the semi-structured interviews, discussed later.

Relationship between ratings of loneliness and participant

characteristics

Self-reported ratings of loneliness were investigated in

relation to the participants characteristics, using mul-

tiple regression, with the Loneliness Scale score as the

dependent variable. Independent variables were partici-

pant gender (male or female), age (in months), living

arrangements (with family or independently), school

history (special education or mainstream), primary day

activity (TAFE or employment), community access

arrangements (supported or independent), and relation-

ship status (single or couple). The analysis indicated no

problems with collinerarity among any of the independ-

ent variables. Correlations (Pearsons r) between the var-

iables are given in Table 1.

Following the application of stepwise regression

(backward selection), only two factors remained in the

equation, explaining 19% of the variance [R2 0.19,F(2,48) 5.37, P < 0.01; school history (beta )0.29,P < 0.05) and primary day activity (beta )0.32,P < 0.05)]. Participants who had attended a special

school reported higher levels of loneliness (M 22.44;SD 10.11) than those who had attended a mainstreamschool (M 16.03; SD 10.06). Participants whose pri-mary day activity was TAFE reported higher levels of

loneliness (M 20.93; SD 11.08) than those whoseprimary day activity was employment (M 14.23;SD 8.22). There were no statistically significant rela-tionships evident between reported levels of loneliness T

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and participant gender, age, living arrangements, ability

to access the community independent of support, or

interestingly, relationship status. Finally, the correlations

in Table 1 indicated that older participants more com-

monly lived independent of their family, and those liv-

ing with their family more commonly attended TAFE

rather than being employed.

Given the comparatively small initial sample size, the

number of individual characteristics to be considered

and the additional effect of missing data on sample size,

additional analyses were limited to bivariate correlations

(Pearsons r). Correlations between loneliness scores and

various social factors are presented in Table 2. As this

table shows, most correlations did not attain statistical

significance. However, there was a significant, negative

correlation between participant ratings of loneliness and

their reported duration of contact with nominated

friends; i.e. ratings of loneliness decreased as reported

duration of contact increased (r )0.44, P < 0.05). Inaddition to the relationship between participant charac-

teristics and ratings of loneliness, there was a significant

positive correlation between the number of people

nominated by participants as friends and the number of

leisure activities they identified (r 0.35, P < 0.05).Moreover, there was a significant negative correlation

between the participants reported frequency of social

activity and their age, with older people reporting lower

frequency of social activity (r )0.40, P < 0.05).

The semi-structured interviews

The semi-structured interviews of participants whose

Loneliness Scale rating was >1 SD below or above the

sample mean were then analysed. Consequently two

groups, each consisting of six participants, were identi-

fied. A summary of participant profiles for the most

lonely and least lonely groups are provided in Table 3.

Not surprisingly, the mean self-reported rating of loneli-

ness for the most lonely group (M 34.50; SD 8.09)was significantly greater than that for the least lonely

group (M 2.17; SD 2.40, t(10) )9.38, P < 0.001).Transcripts of the selected interviews were each read

and explanatory quotes extracted and collated according

to the major domains of the original interview protocol:

(a) participant networks and contacts with friends; (b)

background to and descriptions of best friendships, and

reflections on friendship experiences.

Participant networks and contacts with friends

Each participant identified as most lonely was able to

nominate a person they would call a friend. They gen-

erally reported contact with their best friend to be less

than once a week and mostly less than once a month.

Five of the six most lonely participants indicated a dis-

crepancy between how frequently they currently saw

their nominated friend and how frequently they would

like to see them. The one person who reported being

happy with their current frequency of contact, several

times a week, described his relationship thus: Hes a

nice person; hes got a good attitude; his name is A;

because Ive known him the longest; but he doesnt take

it [our friendship] seriously. One of the most lonely

participants could not identify a current friend. For the

purpose of the interview, they chose to talk about a per-

son who used to be a friend, and who they no longer

saw: I had a boyfriend; she (the person who used to be

her friend) kissed him; we stopped being friends; C and

my boyfriend.

Among the six most lonely participants, four spoke

of having or having had significant relationships with

other people with disability: we both have a disability;

we both know what it is like to have a disability; she

finds it hard to get friends; hes just like me, has a dis-

ability; but different, Im goofy and hes quiet. These

individuals suggested that after leaving school, making

friends was difficult, but easier where the other person

had a disability: at school you get left out (reporting

4 years experience of an integrated high-school); at

TAFE you are all on the same level; we have all been

through the same things (attending TAFE classes

designed to meet the needs of students with intellectual

disability). The two participants in the most lonely

group who identified a person without disability as a

friend both spoke of their friendships having been

Table 2 Correlations (Pearsons r) between occupational and

social factors reported by participants (n 51) and their self-reported ratings of loneliness

Day-time occupation

Study days per week 0.12

Working days per week )0.25Social network

No. of people identified )0.21Mean frequency of contact )0.15Mean duration of contact )0.44*No. of activities identified 0.21

Mean frequency of activities 0.00

Mean duration of activities 0.13

Positive correlations are associated with participant ratings

indicating HIGHER levels of loneliness; *P < 0.05.



forged in an integrated school setting. However, they

reported their current contact to be less than once a

month, and in both instances indicated that this was

because she is studying her HSC. Here it was possible

that, while the integrated school experience had fostered

friendships, these relationships had not been sustained

beyond the school environment in such a way as to pre-

vent or at least temper the experience of loneliness.

The least lonely participants reported the frequency

of contact with their friend to be in keeping with their

aspirations (e.g. at least several times per week): I see

them Saturday, Sunday and Tuesday, just when ever I

can; keep it just as it is. Furthermore, for the least

lonely group, multiple relationships were consistently

reported. The one participant who was living with his

spouse spoke positively of his marriage, but for the

focus of the interview opted to describe a relationship

with his friend T: we stuck by one another; we kept

contact after he moved to Queensland and when he

came back; he is the only one from school who kept

contact; we always ring one another up. Four of the six

participants in the least lonely group spoke of the dis-

tinct, yet complementary role of boyfriend/girlfriend

and other best friends: I only see him a few times a

week; I have time for other friends, to hang out, do

stuff, go to the movies. Those in the least lonely group

consistently volunteered information not only about

their nominated friend, but also about their connections

with others that were linked to their relationship with

their best friend: we play cricket with our mates. One

participant explicitly stated the value of social networks

to promoting friendship: friends help you make

friends.

Background to and descriptions of best friendships, and

reflections on friendship

The most lonely participants described friendship as

involving trust, a person with whom they could talk

openly and honestly, who was a loyal confidante and

Table 3 Summary of participant profiles

for the most lonely and least lonely

groups

Group 1 most lonely Group 2 least lonely

Gender

One male Five males

Five Females One female

Age

1731 years (M 21 years 10 months) 1751 years (M 27 years 5 months)

SIB-R scores

Broad Independence 13 to 54

(M 45.75)Broad Independence 38 to 58

(M 48.60)Support Level Score 76 to 82

(M 79.25)Support Level Score 57 to 82

(M 71.00)Support Category Intermittent Support Category Intermittent

Communication skills

All could speak in sentences

None used Augmentative & Alternative

Communication (AAC) techniques

All could speak in sentences

None used Augmentative & Alternative

Communication (AAC) techniques

Living arrangements

All six living with parents Four living with parents

One living with partner

One living in group home

Day activities

One was employed Five were employed

Five attending TAFE One attending TAFE

Social circumstances

All were single Five were single

Two to seven significant others

(M 4.33)One with a partner

Three to seven social activities

(M 5.33)Two to 15 significant others (M 6.67)

Three to six social activities (M 4.83)



who could provide social and moral support: A friend

is truthful and open; I hate secrets; I hate bitching; A

person you can trust to keep secrets; they have to be

honest, someone who knows how you feel; someone

who cares about you, no matter who you are; someone

you can trust, who cares for you; who stands up for

you. A friend was also described as a person with

whom to share activities of mutual interest: You can go

out and do nice things; go out and have fun; go out

with them on the weekends; going to parties, dance

parties parties without drugs. However, for this

group, activity seemed to be of secondary importance to

the opportunity to exchange thoughts and ideas: It

doesnt matter where you are, so long as you can talk.

The one most lonely participant who chose to talk

about a past friendship recalled how When I was upset

she would cuddle me and if she was upset, I would

cuddle her; she would listen to my problems and I

would listen to hers; we went out to night clubs to 4am;

I went to her place and she went to mine; I cooked for

her and she cooked for me only once or twice. This

same participant recalled I had a man friend, he used

to live next door; he was trustworthy; he used to get

drunk he was an idiot drunk; then I hated him; I dont

want to talk about that. For those who were lonely, a

common experience was that of recurrent betrayal of

trust in their relationships.

Another of the most lonely participants started by

saying I dont really have a friend; they all turn out to

be back stabbers. She later went on to describe having a

boyfriend: Ive known him a long time 3 years; we

have been dating for 1 year; he works in a factory; I

dont know what he does; he doesnt backstab. How-

ever, this exclusive and relatively long-standing relation-

ship did not seem satisfying. She stated: I want more

friends; the more you find the more you feel happy.

However, later her comments suggested that it was the

opportunity for communication within a relationship

that was at the heart of her current experience of loneli-

ness: You can go out with your boyfriend, but you can

speak with your friends, more than your boyfriend; boy-

friends get jealous and angry, friends dont.

Three of the participants identified as most lonely

spoke of wanting a relationship in the context of having

a boyfriend or girlfriend. Each of these individuals

spoke of having experienced a breakdown in such a

relationship. Two participants spoke of how a third-

party friend had become involved with their boyfriend/

girlfriend and how subsequently they had lost both

friendships. A third participant spoke of how the

demands of their relationship had exceeded what they

felt they were able to do and how they believed these

demands fell outside the scope of how they defined

their friendship: T, he had a disability; I couldnt take

his responsibilities, to look after him; I dont want to be

his mum as well as his girlfriend.

The most lonely participants spoke of how difficult

it was to make and keep relationships: You worry you

will lose them. They suggested that its hard to open

up if they are shy; because Im shy I dont go up to

people, I expect them to come to me; its best when

you are introduced to someone else; introduced to

someone who might suit you; everything is hard; just

getting along with people. Three of the six most lonely

participants identified disability as an issue affecting

how they got along with people and an impediment to

the formation of satisfying relationships: its hard to

break in on the group; Ive been picked on because of

my disability; they ignore you; they didnt like me

because I have disability, they saw me black out; the

best place is on the Internet, where they cant see you;

cant see what you look like.

The least lonely participants described their friend-

ships in more dynamic terms than did the lonely partici-

pants: she does anything I want; she comes over; we go

out together; takes me places; calms me down; helps

me when (I) go to him; lets me sleep at his house; you

get invites to parties.

A further characteristic common to participants in the

least lonely group was the apparent connection they

had with the family of their nominated best friend: I

get on with his family; his brothers are like brothers to

me; his family are good too; I keep my troubles to

myself (i.e. not relying on the nominated best friend

for personal or practical assistance), but his family

would help me; I met her at KFC (open employment);

we talk to each other; were getting to know each

others families.

Four of the participants in the least lonely group

identified their best friend to be a person with disabil-

ity. In two instances these were people described in

terms of being an old school friend, one was a current

work mate (in supported employment) and one was a

boyfriend, known through family connections: his

mum is from my mums village (in Italy); I love him

since I was seven (aged 17 at the time of interview). For

the other two people, one nominated their best friend

to be a youth worker in a local church group who takes

me places; calms me down if Im in a bad mood; helps

me solve my problems; I count on him to make me

happy. However, although he was able to identify other

youth leaders at the group, he was unable to identify



any other peers in the group. The sixth participant nom-

inated his sister who looks after me; looks after my doc-

tors bill; she calls me Stalky. This participant,

though, was unable to name any other person, also

identified The Captain and his wife at the local church

as being among the most important people in his life.

Attending a group associated with the local church was

also an important feature in his social network: you can

make friends everywhere; at church; at Cross Roads;

nowhere else really. For this person having a girlfriend

(who happened to have a disability) was also important,

but apart from naming her, he declined to comment fur-

ther.

Discussion

This study explored loneliness, as experienced by

adults with intellectual disability, and intermittent to

limited support needs (Luckasson et al., 2002). It inclu-

ded piloting a scale to assess loneliness and utilized

qualitative techniques to develop an enhanced under-

standing of the participants experience. It was proposed

an enhanced understanding of the participants perspec-

tive was important to inform support strategies in keep-

ing with their priorities.

The modified Loneliness Scale piloted in the current

study was found to be reliable for use by people with

intellectual disability and intermittent to limited sup-

port needs, in terms of both its internal consistency and

test/re-test reliability. It was also demonstrated to be a

valid measure of loneliness, with moderate correlations

between participants scale scores and observer ratings

of loneliness made by significant others (parents, teach-

ers and work supervisors). Furthermore, when inter-

views were sorted according to the participants

Loneliness Scale scores (most lonely/least lonely), dis-

parate themes were evident which distinguished

between the two groups, in the expected direction. With

some further development (e.g. further validation and

the development of norms), at an individual level, this

scale could be used to assess and monitor loneliness

experienced by adults with disability in receipt of ther-

apy or other services. Furthermore, at a group level, it

could be used to evaluate the effectiveness of pro-

grammes implemented to enhance quality of life

through improving peoples social skills and social net-

works.

For the quantitative analysis, generally demographic

factors (e.g. gender, age, living arrangements, commu-

nity access support needs and, interestingly, relationship

status) were insufficient to explain the participants

Loneliness Scale scores. However, there was some evi-

dence to suggest that those who had previously atten-

ded mainstream schools were less lonely than those

who had previously attended special schools. Similarly,

participants who were employed were less lonely than

those whose primary day activity was TAFE. Future

studies could explore these findings, and in particular

the effect of different educational and vocational options

on peoples post-school/adult social networks and their

subsequent relationships (Riches & Green 2003; Hall

et al. 2005).

Social factors also did not satisfactorily explain the

participants ratings of loneliness. For example, although

there was a significant negative correlation between par-

ticipant ratings of loneliness and the length of time they

reported spending with their friends (i.e. lower ratings

of loneliness were associated with reports of longer time

spent with friends), the analysis did not support a signi-

ficant relationship between ratings of loneliness and

either the mean number of people nominated as part of

the participants social networks, nor the average fre-

quency of contact with those network members. These

results affirm the importance of evaluating peoples

qualitative experience when seeking to understand

friendship and loneliness, and not relying solely on a

quantitative analysis of their social network.

The qualitative analysis added to the quantitative

findings, effectively conveying the participants experi-

ence. The data suggested distinct differences between

the perspectives and experiences of participants whose

Loneliness Scale ratings classified them as most lonely

and those who were classified least lonely. These dif-

ferences included how the two groups described their

friendships and the expectations they had of their

friends, as well as their personal experiences establish-

ing, negotiating and maintaining friendships, and the

subsequent impact of these events on their experience of

loneliness.

While the quantitative analysis did not indicate any

significant association between gender and ratings of

loneliness, this was suggested by the qualitative analy-

sis. All but one of the six loneliest participants were

women. This group described their ideal friend in terms

of a loyal confidant, whom they could trust and with

whom they could talk openly and honestly about prob-

lems. Conversely, all but one of the least lonely partici-

pants were men, who generally described their

friendships in terms of shared activities and practical

support. These descriptions were consistent with gender

stereotypes of friendship identified in the general popu-

lation (Phillips 1981; Cohen & Haberman 1982).



All, but one of the most lonely group could identify

a person they would currently call a friend, though

generally contact with their friend was infrequent (e.g.

less than once a month). However, even where contact

was more frequent, they were of the view that their

friend either did not take the relationship seriously or,

while the friendship was important (e.g. a boyfriend or

girlfriend), it failed to meet their full range of socio-

emotional needs. This was in contrast to the least

lonely group, who reported higher frequency of contact

with their friend (e.g. several times a week) and gener-

ally described how their best friend connected them to

others, especially members of their friends family, who

were reported to be an important source of practical

support.

The qualitative analysis suggested that connection (or

lack of connection) with a social network, which could

meet a diversity of emotional and practicals needs, was

a critical factor linked to the participants experience of

loneliness. This is consistent with the assertion that rela-

tionships serve a variety of purposes and therefore, by

necessity, involve a variety of persons (Bayley 1997).

Those who were least lonely described the value of

their network, while the most lonely participants

expressed a longing for these connections, the absence

of which seemed to contribute to their experience of

loneliness. Similarly, the lonely participants related stor-

ies describing a betrayal of trust and/or a breakdown of

honesty in their friendship, which appeared to contrib-

ute to their experience of loneliness. These were indicat-

ive of participants sensitivity to both the social and

emotional dimensions of loneliness, as described for

the general population by Weiss (1973); Russell et al.

(1984) and Andersson et al. (1987).

Consistent with Peplau & Perlman (1982), the qualita-

tive analysis further suggested that those who were

identified as most lonely appeared concerned about an

insufficient level of social interaction or a discrepancy

between the quantity of their social interaction and their

personal expectations. This concern of the participants

was not evident in the quantitative analysis.

The participants in the current study valued both the

social and emotional dimensions of friendship; people

with whom to do things and people with whom they

could be themselves. Where discrepancies between

their expectations and their experiences emerged, they

reported loneliness. It was evident that in addressing

loneliness, it is important to consider fostering connec-

tions that provide for both of these needs. Furthermore,

it was evident that where these needs were effectively

met, participants did not rely on a single significant

other (i.e. a best friend or best buddy). Rather, loneli-

ness was least evident among those who perceived

themselves to be part of a network of people, each

member of which performed a specific function or ful-

filled a specific need; the combined effect of which was

to provide a safeguard against loneliness. This finding is

consistent with the assertions of Pescosolido (2001), who

emphasized the centrality of social networks in the lives

of people with disability.

Based on the comments of the current participants,

personal networks are most effective in meeting peo-

ples social and emotional needs if they include oppor-

tunities for relationships that involve people with and

without intellectual disability. For the current partici-

pants, relationships with family members and profes-

sionals could address some important needs (e.g.

practical support and assistance to solve some prob-

lems). However, relationships with those who had

shared life experiences associated with or linked to their

intellectual disability were also very important. Here,

many of the lonely participants identified difficulties

maintaining such relationships. For this reason, family

members and professionals could provide vital assist-

ance in fostering the continuation of connections

between people with intellectual disability at key transi-

tions in their life: the completion of high school or

TAFE; when leaving a place of employment; or moving

house. Finding their friends telephone numbers, having

support to exchange greetings cards at birthdays and

Christmas, to initiate contact and to extend invitations

to visit or to go out together, and help to identify the

bus or train routes to their friends houses were all high-

lighted by participants as areas where they wanted prac-

tical assistance.

The sample for the current study was purposive, in

so far as adults with intellectual disability were

approached to participate at their place of work or post-

school education; there was no attempt at establishing a

stratified random sample. However all participants met

inclusion criteria, which included a screening protocol

to assess competency to use the Loneliness Scale. Given

the size and structure of the sample caution is warran-

ted in generalizing the quantitative findings to the wider

population of people with disability. This should not be

a major concern with respect to the qualitative analysis

(Guba & Lincoln 1994). However, given that for the qua-

litative analysis the researcher was the instrument of

analysis (Lincoln & Guba 1985), consideration should be

given to the possibility that knowledge that the partici-

pants in the two sub-groups were already classified as

most lonely or least lonely could have influenced the



interpretation of the interviews. Future studies could

address this possibility through the use of third-party

coders, blind to any additional information concerning

participant profiles.

Personal relationships are one of the key areas requi-

ring attention if people with disability are to experience

a quality life as valued members of the community

(McVilly & Rawlinson 1998; Wolfensberger 2000; Rein-

ders 2002). Furthermore, the mission statements of sup-

port organizations commonly suggest that enhancing

the quality of life of people with disability is a priority.

However, in promoting and supporting personal rela-

tionships, and in particular friendships, considerable

work is yet to be done (McLeod et al. 2002; Read 2002).

This work could be more effective if family members

and support professionals had a greater understanding

of the experiences and aspirations of people with intel-

lectual disability. To this end, further research utilizing

a clinical methodology incorporating both quantitative

and qualitative techniques, as used in the current study,

could prove to be of considerable utility.

Correspondence

Any correspondence should be directed to Keith R.

McVilly, CDDS, PO Box 6 Ryde, New South Wales, Aus-

tralia (e-mail: [email protected]).

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Adults With Intelectual Disability Discuss Loneliness