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Sue Read, Professor of Learning Disability Nursing, Research Director, School of Nursing & Midwifery, Keele University, Staffordshire, UK. [email protected]
Creative ways of engaging and involving bereaved adults with intellectual disabilities in research:
Developing a photovoice workshop to maximise participation
Gulshan Tajuria PhD candidate, Keele University, Staffordshire, UK.
Travelling from…
Staffordshire is in the Midlands area of England, and is 10,572 miles from Sydney.
Aims • To identify the importance of
involving marginalised groups in research
• To explore the challenges of involving users and carers in research
• Introduce photovoice as a creative method of engagement for people with intellectual disabilities.
{UK} DH (2001) describe people with learning disabilities {sic}
as having a reduced ability to understand new or complex information, or to learn new skills
(impaired intelligence) with a reduced ability to cope independently (impaired social functioning) which
started before adulthood and with a lasting effect on development.
Defining Learning Disabilities
In real life an intellectual disability is when
someone learns to do things slower.
Someone may find it difficult to understand
complicated words or to concentrate for a
long time.
But people can still do what other people
can do.
Understanding intellectual disabilities
Involving service users in research
‘..a fundamental change in our relationship with the patients and the
public…to move from a service that does things to and for its patients to one which
is patient led, where the service works with patients to support them with their
health needs’ (DoH, 2005)
Why do we think it is becoming increasingly important to involve a range of users and carers in healthcare?
Who am I?
Why involve? Change
– Changing face of healthcare
– Changing landscape of care delivery – Technologies – Rapidity – Frequency – Complexity – Forget who we are here to serve…
Nature of involvement
• Practice issues
• Education
• Research
Nature of involvement
• Stark reality
• Lived experiences
• Enhance our understanding
• Reduce the theory to practice gap • Ensure ‘Fit for purpose’
Nature of involvement
• Maintaining contemporary healthcare practice
• Valuing people and their experiences • Working together…
Nature of involvement
• To enable service users to have a louder voice in the research that focuses on them.
• Increasingly seen as ‘must do activity’ (Beresford, 2003)
• Research Govt. Framework (DoH, 2003)
recommends that service users views be included in the design, conduct, analysis and reporting of health and social research.
Levels of involvement (www.invo.org.uk)
Consultant Collaboration User-controlled
Seldom heard groups (Marrow et al, 2012)
• People with physical disabilities
• Deaf communities
• Blind and partially sighted communities
• People with mental health issues
• BME groups
• People with intellectual disabilities
Research involving people with a learning {sic} disability can sometimes
be difficult because it hasn’t been done often enough to be perceived
as easy... (Read & Corcoran, 2009)
Research methods
• Participatory action research • Interviews • Focus groups • Case studies • Narratives • Biographies • Life story approaches
Research approaches (Walmsley, 2001)
• Participatory: – Experiences of people with an
intellectual disability themselves
– Partnership working
– Qualitative research.
Research approaches (Walmsley, 2001)
• Emancipatory: – Researchers expertise is at the disposal of
the person with an intellectual disability
– Committed to changing the conditions of the relationship between researchers and the researched (Oliver, 1997)
– Qualitative or quantitative.
Challenges • Values, beliefs, attitudes (wanting to involve
and engage)
• Finding ways to effectively listen
• Talking in a language that can be understood
• Recruiting people to become involved
Challenges • Engagement
– Accessing/ recruiting people
– Consent – Communication
• Older people • People with an
intellectual disability
• Children • Professional carers
Creative approaches
• Art, music, drama offer rich possibilities for stimulating the imagination (Mount, 1995; Neelands, 1992).
• Sensory ethnography (Pink, 2009)(social context)
• Storytelling (Jennings, 2006), memory books and boxes
• Pictures and photographs
Photovoice
‘Photovoice uses photography as a means of accessing other adults’ worlds and making those
worlds accessible to others’ (Booth & Booth, 2003:431
Photovoice
Rationale behind the use of Photovoice in bereavement research: • Innovative, adaptable and flexible
• People with intellectual disabilities often
respond well to visual cues and methods
• Enhances methods of communication and can contribute actively (Mathers, 2005)
Photovoice Rationale behind use of Photovoice in bereavement research: • Photographic methods are more user-led
in describing experiences of vulnerable people (Donaldson, 2001)
• The photographs by the participants grasp viewers’ attention and provide direct insight of experiences (Aldridge,2007)
The current study Gulshan Tajuria is a full time PhD student:
Interested in exploring the impact
of different therapeutic approaches to support bereaved adults with an intellectual disability Has used photovoice as one method of engaging with participants with an intellectual disability
Kindly allowed me to use her experiences of developing a workshop to illustration how it works.
Consultation, recruitment and consent • Informed consent
Process consent (Beaver et. al. 1996)
• Accessible participant information sheets (phone, post and workshop day)
• Time to think and
reassess consent before inviting to workshop
• Two adults with ID consulted before starting the process, resources discussed
• All participants were from Reach at Asist advocacy services
• Potential participants contacted by Advocacy staff first
• Interested participants contacted by researcher
Aims of photovoice workshop • To assess support required for using camera
• To provide technical information
• To provide guidance on ethical and safe photography
• Checking understanding about research
• All equipment was numbered
• Clear information with images used to explain procedures
• Folders for participants
• Folders created on laptop
• Props were selected to take photographs
Preparation for workshop
• Venue: Advocacy organisation (familiar environment)
• Participants invited (N=10)
• Attendance : adults with intellectual disabilities (n=5) supervisors (n=2), staff members from Reach (n=2) and researcher
Photovoice workshop
Photovoice workshop
• Introductions by all participants
• Participants brought photos from home
Treasure hunt activity
• Participants taking photos around room and using props
Analysing photos
Photos taken by participants: • Shown on projector • Each participant discussed photos • Support needs were assessed • Focus, framing, follow through and flash
I was taking photo of Radio station outside
window…
Explaining ethical issues
• Information sheets developed using clear words and pictures
• Real examples used
Ending exercise
“…learning about digital camera, what you have to do, all
the different angles…”
“liked knowing about different
support I had and going to have”
“I enjoyed course and taking
photographs”
“I think the photograph
project is good…”
“Didn’t like when picture didn’t work…”
“going to bring memories of mum
and dad…”
One thing liked by
participants
Key reflections on workshop
• Planning, preparation and flexibility
• Choosing familiar, accessible venue and seating arrangement
• Practical involvement and rehearsal
• Treating people with ID with adult status fundamentally important
Key reflections on workshop
• Creativity and practice using
objects
• Sharing reflections and consolidating
• Reminders: cameras to keep and memory cards to post
Data collection After the workshop: • Cameras and memory cards were distributed • Participants were given instructions and folder After 2-3 weeks: • All memory cards were sent back by participants • 410 photos were printed • Interviews were arranged to explore photos • All participants were very enthusiastic to share their photos
and stories
Preliminary results Photos taken by participants comprised of: • Family, family gatherings, friends, strangers, self, carers • Achievement certificates, musical instruments, sports,
pets, nature, home, food • Graveyards, cards related to loss
Interview day: • Participants were shown their photos • Used interview guide • Asked to choose three photos to talk about • Stories were often very different from photos
Can’t decide which one to
choose...
• Difficulty in choosing
Preliminary conclusions • Using clear information crucial
• Prevailing sense of empowerment from owing a
camera and freedom to take photos
• Photovoice has added significant information which could have been missed by using just the traditional methods of data collection (Rose, 2001)
I have bought a
new case to protect my
camera
Look how happy I am
drinking beer with my family
Have I taken all these photos!!!
Can I send you photos by email as
well because I have some photos in my
iPad and I feel happy looking at
them
• Creative methods promote engagement
• The success of the photovoice technique in this study is reflected from the amount of photos taken and content of interviews, as echoed by Aldridge (2007)
Ingredients for user and carer engagement
• Mutual respect and partnership working • Organisational support • Time • Financial support (Fox et al, 2007)
• Effective communication • Accessible and meaningful information • Creative approaches to meaningfully
engage (Read & Maslin-Prothero, 2009)
To conclude • For genuine user involvement to become a
reality, researchers must fully engage with the importance of the challenges and the need for additional considerations to enable participation
• Treat people with respect
• Need to be creative
• Need to work collaboratively
To conclude…
Research can be a vehicle for listening and meaningful consultation.
User and carer involvement has the capacity to enhance the evidence base for the profession and improve health and social care.
‘…no soul remembered is ever really gone’.
(Albom, 2013: 308)
‘At the beginning I thought photography was magic…I will never forget this training and what it
has done for me.
Even if I die tomorrow I die knowing that I have been able to document my life
through photography.’
Julie Salima, participant on the Positive Negatives project, Democratic Republic of the Congo (2000).
Sue Read, Professor of Learning Disability Nursing, Research Director, School of Nursing & Midwifery, Keele University, Staffordshire, UK. [email protected]
Thank you for listening. Any questions…
