Have you ever talked to a woman with Turner Syndrome? A rationale for the use of photo elicitation
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How photo elicitation works as an interview method with women with TS who may have a mild cognitive impairment potentially affecting communication.
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Have you ever talked to a woman with Turner Syndrome? A rationale for the use of photo elicitation
- 1. ‘Have you ever talked to a woman with Turner Syndrome?’ A rationale for the use of photo-elicitation interviews in research on reproductive decision making with women with mild cognitive impairment Kriss Fearon
- 2. • The study • Methodological issues • Examples of PE in practice • Additional adjustments • Conclusions
- 3. The study • Explores reproductive decision making, views on new reproductive technology, impact on the family • TS is: – A chromosome disorder. – 90% of girls are born without ovaries – A spectrum condition; varies greatly – Associated with a profile of cognitive and physical issues • Women with Turner Syndrome; mums of girls with TS
- 4. Methodological issues • Information from TS charities, medical experts, university disability adviser • Method suitable for a sensitive topic and potential cognitive issues: – working memory impairments – difficulty in decision-making and time management – delayed response times – a reduced ability to interpret facial expressions and body language – a tendency to take words literally – social anxiety
- 5. • Participants were asked to bring 3 photos to the interview – Photos they had already, or had taken for the project • Sharing photos - consent – with the researcher, for analysis – for use in publications – photos of living third parties not made public • Positive response – Over 170 items, not all photos How PE was used
- 6. Planning in advance ‘It’s been a really, really helpful process to go through the photos, and sort of put my story into… to put it in some sort of order that would make sense to somebody else.’
- 7. Putting thoughts into words ‘All dogs go to heaven’ – Jim Warren, artist
- 8. A hard to reach perspective
- 9. “I’ve always been very shy and, socially, a little anxious. It’s quite a big thing just coming today, to be honest. It’s not like… it’s good for me – it’s good to push yourself!” Gives participants control
- 10. Additional adaptions • Recruitment and communication – Ask participants what they need – Provide PIS, consent form and other docs in several formats, eg video • Conduct of the research interview – Face to face; topic agenda – A comfortable location, session length, breaks – Use plain English, avoiding metaphor, irony or humour – Communicate in words, rather than with facial expressions or body language alone. – Speak face to face, so the participant can lip read if necessary • Follow up – Able to submit additional thoughts
- 11. “I think because we can struggle socially a little bit more, a lot of people can get discouraged and definitely notice thinking differently. I wouldn’t say it’s necessarily an impairment. I’d say if everybody thought the way a person with Turner Syndrome thinks we’d all get on just fine. The only difficulty is that we all live in a world where people don’t. People don’t have chromosome disorders, and they think about things one way and we think about them a different way. Often, they need to take a different approach…” Conclusion
- 12. Aldridge, J., 2007. Picture this: the use of participatory photographic research methods with people with learning disabilities. Disability & Society, 22(1), pp.1-17. Vancouver Allen, L., 2008. Young people's ‘agency’ in sexuality research using visual methods. Journal of Youth Studies, 11(6), pp.565-577. Clark-Ibáñez, M., 2004. Framing the social world with photo-elicitation interviews. American behavioral scientist, 47(12), pp.1507-1527. Vancouver Harper, D. (2002). Talking about pictures: A case for photo elicitation. Visual studies, 17(1), pp.13-26. Liebenberg, L., Didkowsky, N. and Ungar, M., 2012. Analysing image-based data using grounded theory: the Negotiating Resilience Project. Visual Studies, 27(1), pp.59-74. Vancouver Luttrell, W. (2010). ‘A camera is a big responsibility’: a lens for analysing children's visual voices. Visual studies, 25(3), pp.224-237 Pain, H., 2012. A literature review to evaluate the choice and use of visual methods. International Journal of Qualitative Methods, 11(4), pp.303-319. Papaloukas, P., Quincey, K. and Williamson, I.R., 2017. Venturing into the visual voice: combining photos and interviews in phenomenological inquiry around marginalisation and chronic illness. Qualitative Research in Psychology, 14(4), pp.415-441. Vigurs, K. and Kara, H., 2017. Participants’ productive disruption of a community photo-elicitation project: improvised methodologies in practice. International Journal of Social Research Methodology, 20(5), pp.513-523. Wiles, R., Prosser, J., Bagnoli, A., Clark, A., Davies, K., Holland, S. and Renold, E. (2008). Visual ethics: Ethical issues in visual research Selected bibliography
- 13. • Visit our website: www.dmu.ac.uk/CRR • Follow @CRRDMU for updates
Editor's Notes
- Intro – PhD study Brief intro to the research study Problems I was trying to solve regarding participant care and being able to elicit good quality data about a sensitive subject Explain how PE help to solve some of those problems Examples of PE PE as a method was v important but other steps needed too Finally will briefly look at the wider context of other adaptions that were needed – how useful it was overall References at the end
- TS spontaneous X chromosome disorder, not heritable, only affects women Impact of TS Born without ovaries – decisions Growth issues, risk to pregnancy – heart, kidneys Spectrum – girls can be affected to some degree, or not at all Mums with TS too – egg freezing, plus influence on their children’s reproductive choices.
- Key aspect of participant care is thinking through what participants might need Cognitive impairments – may affect the research interview or the way it is conducted Talked to people who could give more info about what this means One researcher (Gould, 2013) calls them ‘cognitive differences’ rather than impairments – however it’s a spectrum so not clear how it might affect an individual Looking for a method that worked for a sensitive subject plus would address some aspects of cognitive impairment Eg time management, decision making – more time to choose photos and plan 40% of girls with TS have issues with non-verbal communication, the others don’t - a lot of variation Non-verbal communication - often you lead or prompt an interviewee with body language, or use it to build or establish rapport. If your participant doesn’t pick up on that, what else can you do. Not all related to having TS – eg social anxiety Low self esteem and difficulties in building relationships are relatively common with other groups with fertility issues PE can’t address all of these issues but it does address some of them
- Focus for conversation about their thoughts and feelings Ethics and consent Permission to share only 20% - some I couldn’t publish, others were too personal or identified the participant 19 women with TS and 11 mothers of girls with TS, asked to bring photographs that helped them express their thoughts and feelings about TS, motherhood and fertility. Over 170 items Song, baby book, poetry, letter to her daughter, inspirational quotes, drawings, selfies
- Will give some examples that show how this worked. Advance planning helpful for people with time management issues who may need to think through what they want to say Participants often gave in-depth, thoughtful responses – long interviews, worked as an interview agenda This participant struggled with a sense that her parents had betrayed her by not telling her that she was infertile, so she found out at a routine medical appointment. Choosing photos enabled her to decide how she was going to tell me about this experience and to be in control of it.
- Enable participants to express complex thoughts and feelings about fertility and having a family. My dog had puppies, so I’ve experienced the cycle of life through that and watched her children grow up. It’s nowhere near having your own children but at least I explored 1% of something about that process. […] I think it’s become such a big part of my life because I’ve wanted to nurture something but it’s not there so it’s been – well – not focused – maybe into something in that direction. Just to naturally have something to nurture and look after and have this to take for walks and do something with, otherwise I’d have nothing. […] I just know it’s always been, it’s like a void that you can’t fill, and I know consciously that a dog can’t fill that particular void. They are an animal you can train and love and do everything else, but it’s just a totally different – you can separate between the two. Photo enabled the participant to talk about her experience of fertility through her pet dogs – felt left behind by peers, too late to have children, nuanced way to view feelings about fertility
- Photos give access to a time and place that researchers cannot otherwise access – evocative photo that shows a quality of relationship that is hard to put into words That picture of me and my nan is really special to me because she died some years ago. I think she taught me that grandmothers as well are incredibly influential figures. She was an influential figure in my life anyway, because I could see a lot of her influence in my mum as well, so she, sort of, through the way she mothered my mum, she taught my mum how to be a mum to me. So, she was an amazing lady, she was. Expresses the quality of the relationship and how her grandmother passed on parenting skills to her mum which the participant wants to pass on when she has children Child is holding a doll, a theme which came up repeatedly across the images as a proxy for a girl expressing mothering behaviour, but was barely mentioned in interviews. Shows how PE can contribute to the analysis by presenting different info than verbal interviews.
- Social anxiety not just related to TS but addressed in 2 ways Visual research = includes the researcher photos and videos – am I someone they feel OK to talk to about sensitive subjects Gives participants control – not just passively answering questions but planning the agenda by choosing photos, own the interpretation Actively co-created interview
- Visual methods aren’t the whole story – other steps are needed too particularly if you know your participants may need particular types of support Ask participants what would be useful to them – but bear in mind they might not tell you Bear in mind prevalence of disability in the general population 20% eg mother with hearing impairments, need to be aware of lip reading – others may have access needs Not always easy to adapt interview behaviour - need to verbalise doesn’t come naturally
- Photo elicitation interview address more than one aspect of potential impairment at a time - eg planning is good for time management and anxiety Hard to spot cognitive or comms issues – women with TS live in an NT world so work of understanding and communicating may be invisible Spectrum – might not have spoken to people more severely affected. Gave me a better sense of some of the challenges of women with TS Quality of data – people embraced the method – so it is effective for some people To conclude Photo elicitation was an important part of that but not the whole Has to be part of a wider methodological strategy to encourage and facilitate participation In order to get the benefit of making research more inclusive Comment from a participant about how cognitive issues affected her daily life. Thought needs to go into how to
- Visual research methods refs only.