Cookies on this website
We use cookies to ensure that we give you the best experience on our website. If you click 'Continue' we'll assume that you are happy to receive all cookies and you won't see this message again. Click 'Find out more' for information on how to change your cookie settings.

MSc in Evidence-Based Health Care alumni, Kirsten Prest, reflects on the qualitative research she conducted as part of her dissertation, with a particular emphasis on reflexivity and storytelling.

Profile picture of MSc alumni, Kirsten Prest

As a paediatric occupational therapist (OT), I have had hundreds of opportunities to sit down with a parent or caregiver of a child with a disability and hear their story. I did not expect it to be vastly different when I sat down to listen to my participants as a qualitative researcher. However, the stories that were shared with me were raw and powerful, and I caught a glimpse of the vulnerability that is usually hidden during professional OT interactions.

In this blog, I reflect on the qualitative research that I conducted as part of my MSc in Evidence-based Healthcare. I discuss the findings of the study, as well as learnings that are transferrable to my professional practice. I reflect particularly on two aspects that are central to qualitative research, namely reflexivity and storytelling. Reflexivity is an approach taken to examine one’s position, preconceived ideas, unconscious expectations, and how these impacted the decisions made throughout the study process (1). Storytelling or narrative inquiry is a methodology that aims to study human’s lived experiences (2). My supervisors, Aleksandra Borek and Anne-Marie Boylan were invaluable throughout the research process, but particularly during periods of reflexivity concerning sensitive topics that arose during the research study. With their assistance, I submitted an article to a peer-reviewed journal which has now been published and can be found at DOI: 10.1111/cch.12962

MSc in Evidence-Based Health Care - Dissertation thesis

My dissertation aimed to explore parents’ experiences of attending play-based groups for their children with cerebral palsy (CP). I was particularly interested in the groups’ impact on parent wellbeing, as healthcare professionals who work with children with CP have been encouraged to support the wellbeing of parents too (3). The study was based at a charity that ran therapist-led play-based groups for the children, but also provided support for caregivers such as training workshops, opportunities to connect socially, and a dedicated parent support worker. I developed the study protocol with support from my supervisors and gained valuable insights from Patient, Public Involvement (PPI) activities. PPI in research encourages patients and members of the public to offer important perspectives, making the research more relevant and dependable (4). 

Qualitative Research Methods module

As part of the Qualitative Research Methods module, I was able to work with my small group on how to structure the interview guide in a way that would elicit discussion about the groups’ impact on wellbeing. It was clear at this point that I would need to establish rapport and trust with the parents during the interviews, before embarking on questions around wellbeing. Examining my position and preconceived ideas were essential throughout the interviews as I had to replace my OT ‘hat’ with my researcher ‘hat’. I kept a journal throughout and had regular check-ins with my supervisors. I found that through transcribing the interviews myself, I was able to further process particular sensitive and emotional ideas discussed by the participants.

Research themes and findings

Initial findings (themes) found that participants valued the practical support provided by the therapists, trainers, parent support workers, and keyworkers. This support included therapy for the children, training workshops, and advice about schools and financial opportunities. Connecting with others in a similar situation was another theme that outlined the benefits that social support can have on wellbeing. ‘Practical Support’ and ‘Connecting with Others’ were two themes that were expected and are supported by previous literature (5-7). These two themes described how the charity was supporting the children as well as the parents. One parent outlined this clearly:

It’s not only [about] the kids but it’s the mums as well and there’s loads of sharing of experience and equipment, I learned a lot from the other mums at different schools. So this is a two-way kind of group for kids but for the parents as well. – Elizabeth 

This third theme was developed based on participants’ descriptions of ‘Transitioning Journeys’ over their time attending the play-based groups. One participant described her first time attending the group as a big mirror, with nowhere to hide’ (Penny), demonstrating how she felt faced with her reality when seeing other disabled children within the group. Another participant found it difficult to see children with more severe impairments as she did not know what her son would be capable of when he grew up. One mother disclosed that she often feels ‘completely devasted inside’ (Melissa) and that it was difficult to see other parents in the group ‘doing so well. Others recollected how it was difficult in the beginning, but over time, they settled into the groups and felt more comfortable with their child’s disability and identity. Previous research has found that parents of children with CP have different emotional and physical needs depending on their child’s age (8), which mirrors the findings in this study.

The ‘Transitioning Journeys’ theme aimed to describe the complex feelings that mothers had in coming to terms with their child’s disability, and their consequent experience of attending the groups. When conducting the interviews in my researcher role, I found that mothers shared their ‘journeys’ in a different and more vulnerable way with me. They were less reserved and more candid about their triumphs and struggles than what I was used to in my professional interactions as an OT. Was it because as a researcher, I was asking them to share their story? Not merely a brief medical background of their child? If healthcare professionals are being encouraged to support parents’ wellbeing, I began to ask myself how can I as an OT create a more trusting environment where parents might feel safe to share their stories? Healthcare professionals involved in the child’s care might benefit from understanding wherein their ‘journey’ caregivers might be. An important question that we can be asking is:

What can we do to centre caregivers’ experiences during our interactions with them? 

I recently attended a workshop with Dr. Peter Rosenbaum from the CanChild Centre for Childhood Disability Research about ‘The F-Words for Child Development. Their team has adapted the International Classification of Functioning, Disability and Health (ICF) into a series of important concepts for children with disabilities which include function, fun, family, friends, fitness and future (9). ‘Family’ is key to this research study as it is an essential part of the child’s environment. I asked Dr. Rosenbaum the above question about how to centre caregivers’ experiences. He suggested starting each interaction by asking a caregiver to ‘boast’ about their child and to ‘tell their story, rather than listing their problems and diagnoses. Bringing storytelling (a key part of qualitative research) into professional interactions might provide parents or caregivers with a safer and more trusting platform from which to describe their journeys, as I experienced through conducting semi-structured interviews.

A final theme ‘Different Motivators, Different Experiences’ was developed based on participants describing how they had varying reasons for attending the groups, which impacted their overall experience of them. Some attended the groups purely for the therapy support, whereas others felt that it was the only place to connect with other parents in a similar situation. This reinforced the understanding that interventions for children with CP should be multi-faceted and there is no ‘one size fits all approach (10).

The four themes that were developed aimed to answer the research question: ‘What were parents’ experiences of the play-based groups and their impact on parents’ wellbeing?’ Through conducting this qualitative research study, I was able to answer far more than the research question. I gained invaluable experience in practicing reflexivity, understanding how one’s position can influence interaction, and the power of storytelling in establishing a safe space from which to learn about patients’ experiences.

References

 

  1. Lincoln YS,  Guba EG. Naturalistic Inquiry. Newbury Park, CA: Sage Publications: 1985.
  2. Clandinin, DJ. Narrative Inquiry: A Methodology for Studying Lived Experience. Research Studies in Music Education 2006; 27(1):44–54. doi:10.1177/1321103X060270010301.
  3. Davis E, Shelly A, Waters E, Boyd R, Cook K, Davern M. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child: care, health and development 2009; Available from: http://hdl.handle.net/10536/DRO/DU:30024889
  4. NIHR INVOLVE. Briefing note three: why involve members of the public in research, 2009. Available from: https://www.invo.org.uk/posttyperesource/why-should-members-of-the-public-be-involved-in-research/ . [Accessed July 12th 2020]
  5. Shilling V, Morris C, Thompson‐Coon J, Ukoumunne O, Rogers M, Logan S. Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Developmental Medicine & Child Neurology; 2013;55(7): 602–609. Available from: doi:10.1111/dmcn.12091
  6. Hayles E, Harvey D, Plummer D, Jones A. Parents’ Experiences of Health Care for Their Children with Cerebral Palsy. Qualitative Health Research; 2015;25(8): 1139–1154.
  7. Kingsnorth S, Gall C, Beayni S, Rigby P. Parents as transition experts? Qualitative findings from a pilot parent‐led peer support group. Child: care, health and development; 2011;37(6): 833–840. Available from: doi:10.1111/j.1365-2214.2011.01294.x
  8. Park E-Y, Nam S-J. Time burden of caring and depression among parents of individuals with cerebral palsy. Disability and Rehabilitation. 2019;41(13): 1508–1513. Available from: doi:10.1080/09638288.2018.1432705
  9. Rosenbaum P, Gorter JW. The ‘F‐words’ in childhood disability: I swear this is how we should think. Child: Care, Health and Development. 2012;38(4): 457–463. Available from: doi:10.1111/j.1365-2214.2011.01338
  10. Terwiel M, Alsem MW, Siebes RC, Bieleman K, Verhoef M, Ketelaar M. Family-centred service: differences in what parents of children with cerebral palsy rate important. Child: Care, Health and Development. 2017;43(5): 663–669. Available from: doi:10.1111/cch.12460