Empowering People Experiencing Usher Syndrome as Participants in Research

Evans, Michelle

doi:10.1093/bjsw/bcw147

Cited by 7 publications

(5 citation statements)

References 31 publications

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“…The interim transcripts were subsequently amended. Interpreters' involvement in this process enhances the trustworthiness of the study (Evans, 2017a;Squires, 2009). Analysis then followed the iterative six-step IPA process described by Smith et al (2009).…”

Section: Discussionmentioning

confidence: 99%

“…The average interview length was 64 minutes. The approach to interviewing was informed by the first author's experience as a specialist social worker, learning from a pilot interview, and the limited literature on the practicalities of interviewing deafblind people (Arndt, 2010; Ellis & Hodges, 2013; Evans, 2017a; Oleson & Jansbøl, 2005). Known strategies for collecting rich data were adopted yet adapted to ensure their usefulness when interviewing deafblind people.…”

Section: Methodsmentioning

confidence: 99%

“…The interim transcripts were subsequently amended. Interpreters’ involvement in this process enhances the trustworthiness of the study (Evans, 2017a; Squires, 2009).…”

Section: Methodsmentioning

confidence: 99%

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Vulnerability among older people ageing with deafblindness

Simcock

Manthorpe

Tinker

2022

Journal of Social Work

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Summary Vulnerability is an underexamined concept in social work. Scholarly activity principally concentrates on policy analysis and theoretical debate; less attention is given to lived experience of vulnerability from the perspectives of particular groups, impoverishing understanding of the phenomenon. This article presents findings from the first United Kingdom-based study of the lived experience of vulnerability from the perspectives of older deafblind adults. Adopting a qualitative design, data were collected via 18 semistructured interviews with eight participants (aged between 49 and 83), undertaken between October 2014 and July 2016. Data were analyzed using interpretative phenomenological analysis. Findings Participants interpret vulnerability as layered, describing what they feel vulnerable about, what they feel vulnerable to, and when they feel vulnerable. The latter layer is predominant: vulnerability experiences are time-limited, and situation and setting specific. Situational and pathogenic sources of vulnerability include the responses of other people, particularly the experience of being misunderstood or perceived as incapable. The layers of vulnerability are not discrete: they can be combined and avoidance of one vulnerability can exacerbate another. Applications Findings strengthen arguments against categorizing particular groups, including deafblind people, as permanently and immutably vulnerable. Such categorization, focused solely on impairment, provides an inadequate understanding of experience. Policymakers should consider adopting a layered approach to defining vulnerability. Assessment of these layers and how they interact may offer social workers an enhanced understanding of deafblind people's experiences and assist in determining what matters to them. Assessment should explore coping strategies, and assumptions of incapability based on impairment be rejected.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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Vulnerability among older people ageing with deafblindness

Simcock

Manthorpe

Tinker

2022

Journal of Social Work

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“…Strategies for collecting rich data were adopted throughout the interviews and were adapted where necessary to meet participants’ communication and language needs. The first author's experience as a specialist social worker, learning from a pilot interview and the limited literature on the practicalities of interviewing deafblind people (Oleson and Jansbøl, 2005; Arndt, 2010; Evans, 2017) informed these adaptations. BSL interpreters were employed to help facilitate interviews with two participants.…”

Section: Methodsmentioning

confidence: 99%

A salutogenesis approach to ageing with impairment: the managing and coping experiences of older people ageing with deafblindness

2022

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An understanding of the psychosocial impact of deafblindness on older people is impoverished by a dearth of research in the field. Particularly limited are studies adopting a salutogenesis perspective, in which older deafblind people's coping capacities are explored. Much research focuses on vulnerability to unfavourable outcomes, which may perpetuate negative stereotypes of deafblind people as passive and dependent. Identifying deafblind people as a vulnerable group gives rise to misunderstanding of the impairment, perceptions of incapability and neglect of deafblind people's agency. This paper draws on data from the first United Kingdom-based study of vulnerability from the perspectives of older adults ageing with deafblindness. Findings presented here relate to participants’ experiences of managing and coping with their felt vulnerability and ageing with deafblindness. The study adopted interpretative phenomenological analysis (IPA) as its qualitative approach. In-depth semi-structured interviews were undertaken between October 2014 and July 2016 with eight participants, aged between 48 and 83 years. Data were analysed using an iterative six-step IPA process. Three superordinate themes were identified: taking action to protect self; psychological coping strategies; and accessing and using care and support. Participants’ managing and coping strategies, and the care and support they value, respond to elements identified as generating felt vulnerability. Professionals should seek to bolster coping capacity and provide support in ways valued by those ageing with deafblindness.

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“…Others have illustrated that the social setting of sexual and gender minorities renders them vulnerable in specific ways, showing how a better understanding of the health issues they face could encourage this group to engage more with health providers (Mattocks et al, 2014). In studies with disabled participants using sensory communication methods such as British Sign Language, participants' greater expertise in using BSL could act to reduce the power imbalance with the researcher (Evans, 2017): thoughtful research design can reduce inequality in the research relationship.…”

Section: The Importance Of Adapting Research Designmentioning

confidence: 99%

‘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

Fearon

2019

Methodological Innovations

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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.

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Empowering People Experiencing Usher Syndrome as Participants in Research

Cited by 7 publications

References 31 publications

Vulnerability among older people ageing with deafblindness

Vulnerability among older people ageing with deafblindness

A salutogenesis approach to ageing with impairment: the managing and coping experiences of older people ageing with deafblindness

‘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

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