‘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

Abstract

A growing body of methodological research literature demonstrates the importance of adapting research design to address the specific needs of participants from minority groups. The aim is to treat participants more respectfully during the research process and to enhance participation, ensuring the findings more closely reflect participants' views and experience. However, there is an absence of work examining the needs of research participants with Turner syndrome, a chromosome disorder linked with mild cognitive impairment and its potential impact on research interviews. This article draws on a study of reproductive decision-making in women with Turner Syndrome and mothers of girls with Turner syndrome to consider ways to improve research access and to make methodological adaptations for this group of participants. There is little qualitative research on the experience of living with Turner syndrome or its associated experience of infertility. Most of the small number of studies that exist do not describe whether the research method was adapted to accommodate the psychosocial features of Turner syndrome. Yet, these features, which include social cognition issues and anxiety, may have an impact on women's ability to participate fully in a research interview and consequently on the quality of the data. This article fills a gap in research describing the use of adaptions with women with Turner syndrome, which may be of use to researchers and practitioners working with this group. It describes how a novel approach to research adaptations, universal design, was used to identify and incorporate adaptions into the research design, both through the choice of photo elicitation interviews as a research method and through adjustments made at each stage of the research process. It discusses how adaptions worked to overcome barriers to participation and how effective this was, concluding with suggestions for applying this approach in future research.

Developing a mixed-methods digital Multiple Sorting Task procedure using Zoom and Miro

“…The digital aspect of the MST tested in this study essentially adds “hands-on” and interactive online possibilities to the MST. The convergent study design, careful procedures, and the MSA analytic technique used in this study integrate the advances in mixed methods such as visual methodology (Fetters et al, 2013; Peroff et al, 2022), photo elicitation (Fearon, 2019; Kleih et al, 2022; Philip et al, 2021) and sorting (Yeh et al, 2014) for enriching the overall “understanding of the phenomena under analysis” (Onwuegbuzie and Dickinson, 2008 in Alexander et al, 2021). The MST procedure, including its digital version tested, distinguishes from those integrating qualitative and quantitative analyses that are carried out consecutively (Kleih et al, 2022).…”

“…The study used a multiphase convergent mixed-methods design (Fetters et al, 2013) to explore the development of a digital MST procedure. Figure 1 illustrates the four consecutive stages to develop the digital MST procedure.…”

“…This builds upon traditions in environmental psychology studies to incorporate visual material (i.e., colored pictures) within the general sorting method (Budhwar, 2000; Fiore et al, 2003; Groat, 1982; Wilson, 1996; Wilson and Mackenzie, 2000). The use of pictures is similar to photo elicitation and other visual methods and techniques (Fearon, 2019; Kleih et al, 2022; Philip et al, 2021), which helps to obviate possible language or culture barriers in studying ambiguous and/or stigmatized subjects. In the MST procedure, the participants are asked to sort pictures into groups in such a way that all pictures in one group are similar in some significant ways and different from those in other groups.…”

Stripping back the novelty: A critical reflection on the dual use of a comic-based approach to engage participants and publics

“…Photo-elicitiation is recognised as being valuable for engaging participants and encouraging reflection on issues beyond what can be achieved using in traditional interview techniques (Fearon, 2019). The use of photo elicitation, can also sharpen the focus of a participants memory (Fearon, 2019). However, in the context of this study, the visual element was needed to create a space for reflection on how the findings of this study resonated with participants wider experiences.…”

“…One of the more recognisable methods that might resonate with readers of this piece are photoelicitation methods. Photo-elicitiation is recognised as being valuable for engaging participants and encouraging reflection on issues beyond what can be achieved using in traditional interview techniques (Fearon, 2019). The use of photo elicitation, can also sharpen the focus of a participants memory (Fearon, 2019).…”