‘Have you ever talked to any women with Turner Syndrome?’ Adapting interviews for women with mild cognitive impairment

This May, after many months of hard work on behalf of the authors and editorial team alike, saw the publication of a special issue of the journal ‘Methodological Innovations’ which we put together based on submissions to the panel ‘Social Studies of Reproduction: techniques, methods and reflexive moments’ which we convened at the International Sociological Association’s 9th International Conference on Social Science Methodology, in September 2016. A full list of the articles, including author names and URLs to the papers can be found at the end of this blog post.

We asked Kristine Fearon (one of our CRR PhD students) if she would like to write a summary of her paper, indeed her first sole author academic publication, to give readers a taste of what they may expect from the special series.

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Have you ever talked to any women with Turner syndrome?’ Using universal design and photo elicitation interviews in research with women with mild cognitive impairment

Kriss Fearon

https://journals.sagepub.com/doi/full/10.1177/2059799119841933

Qualitative reproduction research very often asks people to share sensitive personal stories and experiences. As a standard part of research practice, researchers are expected to anticipate the potentially upsetting nature of their questions and prepare for the impact this may have on their participants. However, this proactive approach is not always described in research with participants with Turner Syndrome (TS), even though the condition is associated with mild cognitive impairments, some of which may affect the research interview interaction. This blog post, and the paper it is based on in Methodological Innovations, was inspired by the desire to explore how my research approach could be adapted to accommodate the potential needs of my research participants.

My research explored reproductive decision making with women with TS and mothers of girls with TS, who were faced with making choices on their daughter’s behalf. TS is a spontaneous X chromosome disorder associated with a range of symptoms such as short height, infertility, heart conditions and hypertension, cognitive issues such as difficulty with time-management and social cognition, and social anxiety and shyness (Bondy, 2007). It is not a disability, but its symptoms appear on a spectrum so a symptom that is disabling for one woman might only mildly affect another.

As TS and issues related to reproduction are often highly sensitive and personal, I was aware before beginning data collection that this would most likely affect the research approach I would need to take. What was less clear was how some of the symptoms of TS may affect the way the research process and interview interaction was conducted and experienced. Whilst the mothers of the girls with TS did not suffer from the symptoms themselves, I was aware that they may have access needs of their own. Across the wider population, the rate of disability of the women in the age range of the mothers I was likely to interview was 18% (DWP, 2014). As a result, it seemed prudent to prepare suitable adaptations for use by all potential participants and not just those I knew had TS, especially as research indicates that people often feel reluctant or unable to share details of a health condition or disability with new people (ONS, 2014). Furthermore, I was aware that if participants were managing any symptoms without making major changes to their daily life, they may not consider it to be relevant information for an interviewer. This made it more important to discover in advance what might be needed, and plan accordingly.

The first step, then, was to scope the implications. In order to do this, I took advice from people with expertise in TS, who identified relevant issues which may affect some women with the condition and gave suggestions for ways to address them. The issues they identified as potentially important for the interview encounter included working memory impairments; difficulty in interpreting body language and facial expressions; difficulty in decision-making and time management; as well as anxiety. After this, I drew on the principles of Universal Design (UD) as a framework to plan adaptions.

Universal Design (Mace et al, 1998) is a practice originating in architecture which sees disability as being caused by inadequacies in the physical or cultural environment, rather than as something residing within the individual (Barnes, 2011). Applying its guiding principles (such as ‘flexibility’ and ‘low physical effort’) to research meant looking at ways to vary the research setting and interaction to fit individual preferences and needs (Lid, 2014). The choice of research method, photo elicitation interviews, was one important way to achieve this, but adaptions were also made to other aspects of the research approach. This included providing information about consent and photo choice via video as well as in the participant information sheet; leaving the choice of venue to the participant; allowing time for participants to take a break if needed; using words rather than relying on body language and tone to communicate meaning; and allowing more time for the participant to respond to the questions I put to them.

In a photo elicitation interview, participants bring images as a way to start the conversation. Some of the benefits of such an approach to data collection identified by other academic researchers (Allen, 2009; Konecki, 2011; Liebenberg, 2009; Luttrell, 2010) are features that had a double function as suitable adaptions. For example, participants with anxiety may have felt more in control when they had time to plan what to say. The photos were a useful way to help to manage time and bring the focus of the conversation back to the topic at hand. Some participants also used photos to express complex thoughts and feelings that might have been harder to articulate with words alone. Through the use of images, the focus of the discussion was often not the participant but her photos, which allowed time to build rapport during the course of the conversation which was particularly important for participants who were shy or worried about

The participants responded generously to the request to bring photos and ultimately brought twice the number that was expected, including items like a baby book, inspirational quotes, drawings, poems, stories, selfies, and songs. One participant used a painting to express a nuanced view of fertility and family. Her peers had married and had children; she thought she had missed her chance to become a mother and was facing growing old on her own. Using the painting below, she described how, through caring for her dogs, she experienced bereavement and loss, as well as fertility and birth.

Figure 1 KF

Image 1 provided by participant

She explained:

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 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.

Another participant brought a photo of herself aged five with her grandmother, which she described reflected her desire to continue her own experience of good mothering down the family line.

fig 2 kf

Image 2 provided by participant

She commented:

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.

A further participant shared a photo of her five-year-old daughter breastfeeding a doll, copying her mum who was breastfeeding her little brother at the time.

She explained:
Obviously she was just copying me, because I feed our son, but again I thought, you’re probably not going to get to do that, and for her, she sees that as such a natural part of having a baby, because for many it is, but the fact that she won’t get that opportunity just made me feel wow, this moment right now, I can’t speak, because that’s really got to me.
This participant had discovered when she was 12 weeks pregnant that her daughter had TS. While the health aspects of her daughter’s TS were well managed, the participant was still grieving about the infertility diagnosis that would face her child. The times when her daughter displayed what she described as mothering behaviour, such as when playing with dolls, putting a cushion up her dress and pretending to be pregnant, or rocking her baby brother to sleep, made her deeply upset about how difficult it would be for her daughter to have a family. This example shows how much more poignant a photo can be when compared to words alone.

fig 3 kf

Image 3 provided by participant

It is difficult to be certain whether the adaptions made a difference to participants as the study did not set out to evaluate this. However, some participants had potential access needs which they only disclosed when I arrived or during the interview. One mother of a girl with TS did not mention her hearing impairment until we met, having chosen to be interviewed at home so she could control the level of background noise. A proactive approach to planning adaptions was especially useful here: any participant could make this choice, so she did not need to let me know. Another participant remarked, during her interview, on the importance of accommodating cognitive differences as a way to achieve a good rapport and mutual understanding.

She told me:
“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.”

For me, such a statement from a participant clearly shows why planning around potential communication and access issues is so important for research interviews.

The aim of making adaptions was to try to treat participants respectfully and in a way that acknowledged and met their needs and preferences. In doing so I wished to make it easier for potential participants to become involved in the study, but also hoped that making adaptions would in turn produce research which better reflected the experience and views of this under-researched group of people. Ultimately, the number and variety of items that the women brought to interview, the lengthy interviews, and the sensitive, personal thoughts and feelings that people were willing to share, suggests that participants felt comfortable enough to express themselves in the interview encounter. This was pleasing as an early career researcher and a good lesson going forwards about how to try and make research participation and involvement as inclusive as possible.

This blog is based on an open-access article ‘Have you ever talked to any women with Turner syndrome?’ Using universal design and photo elicitation interviews in research with women with mild cognitive impairment, https://doi.org/10.1177/2059799119841933

More details and links to the other papers in this special issue can be found below:

Introduction: Reproduction research: From complexity to methodological innovation

Nicky HudsonKylie BaldwinCathy Herbrand, Nolwenn BuhlerIrenee Day

https://journals.sagepub.com/doi/full/10.1177/2059799119829427

 

Men on the margins? Reflections on recruiting and engaging men in reproduction research

Caroline Law

https://journals.sagepub.com/doi/full/10.1177/2059799119829425

 

Pregnant with possibility: The importance of visual data in (re)presenting queer women’s experiences of reproduction

Sierra Holland

https://journals.sagepub.com/doi/full/10.1177/2059799119829429

 

The ontology of early labour (and the difficulties of talking about it): Using interview methods to investigate uncertain and gendered concepts

Julie Roberts

https://journals.sagepub.com/doi/full/10.1177/2059799119825594

 

Situational ethics in a feminist ethnography on commercial surrogacy in Russia: Negotiating access and authority when recruiting participants through institutional gatekeepers

Christina Weis

https://journals.sagepub.com/doi/full/10.1177/2059799119831853

References from blog post

Aldridge, J (2007) Picture this: the use of participatory photographic research methods with people with learning disabilities. Disability & Society, 22(1), pp.1-17.

Allen, L (2009) ‘Snapped’: researching the sexual cultures of schools using visual methods. International journal of qualitative studies in education, 22(5), pp.549-561.

Barnes, C (2011) Understanding disability and the importance of design for all. Journal of accessibility and design for all, 1(1), pp.55-80.

Bondy, CA (2007) Care of girls and women with Turner syndrome: a guideline of the Turner Syndrome Study Group. The Journal of Clinical Endocrinology & Metabolism, 92(1), 10-25.

Department for Work and Pensions, National Centre for Social Research, Office for National Statistics. Social and Vital Statistics Division, 2014, Family Resources Survey, 2011-2012, [data collection], UK Data Service, 2nd Edition, Accessed 18 June 2018. SN: 7368, http://doi.org/10.5255/UKDA-SN-7368-2

Konecki, KT (2011) Visual grounded theory: A methodological outline and examples from empirical work. Revija za sociologiju, 41(2), pp.131-160..

Lid, IM (2014) Universal design and disability: An interdisciplinary perspective. Disability and rehabilitation, 36(16), pp.1344-1349.

Liebenberg, L (2009) The visual image as discussion point: Increasing validity in boundary crossing research. Qualitative research, 9(4), pp.441-467.

Luttrell, W (2010). ‘A camera is a big responsibility’: a lens for analysing children’s visual voices. Visual studies, 25(3), pp.224-237

Story, MF, Mueller, JL and Mace, RL (1998) The universal design file: Designing for people of all ages and abilities.

Office for National Statistics. Social Survey Division, 2014, Opinions and Lifestyle Survey, Disability Monitoring Module, July, August, September, November and December, 2012, [data collection], UK Data Service, Accessed 18 June 2018. SN: 7498, http://doi.org/10.5255/UKDA-SN-7498-1

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