Facilitating qualitative research interviews for respondents with intellectual disability

Sigstad, Hanne Marie Høybråten; Garrels, Veerle

doi:10.1080/08856257.2017.1413802

Cited by 23 publications

(29 citation statements)

References 30 publications

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“…Importantly, there is no evidence to suggest that it was more difficult for any particular group, Aboriginal or non-Aboriginal, or those with or without a diagnosis. Moreover, yarning as a method for collecting data with non-Aboriginal participants had resonance with other more conventional qualitative interviewing techniques for children with cognitive disabilities (Sigstad & Garrels, 2017).…”

Section: Discussionmentioning

confidence: 99%

“…For children with cognitive disabilities, repeated interviewing has been found to have benefits, particularly when each child’s unique characteristics, abilities, and difficulties are known to the interviewer and the interview format is adapted accordingly (Cederborg, La Rooy, & Lamb, 2008). Flexible communication, including periods of silence, using prompts, rephrasing questions, and summarizing and repeating responses back to participants, has been found to be necessary when interviewing individuals with cognitive disabilities (Sigstad & Garrels, 2017). Preparedness to be adaptable when interviewing can assist in meeting the special needs of children and young people with cognitive disabilities (Teachman & Gibson, 2013), and this is particularly important when the research explores challenging topics such as the experience participating in assessments for FASD (Pain, 2012).…”

Section: Introductionmentioning

confidence: 99%

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Disability “In-Justice”: The Benefits and Challenges of “Yarning” With Young People Undergoing Diagnostic Assessment for Fetal Alcohol Spectrum Disorder in a Youth Detention Center

et al. 2019

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Undertaking research with young people presents an array of methodological challenges. We report the findings from a qualitative study that took place alongside a fetal alcohol spectrum disorder (FASD) prevalence study among detainees in Australia. Of 38 participants, 27 were Aboriginal youth. Interviews were conducted using “social yarning” and “research topic yarning,” an Indigenous research method which allows for data collection in an exploratory, culturally safe way. A complex interplay emerged between social yarning and research topic yarning which provided a space to explore responsively with participants their experiences of FASD assessments. Flexibility, including language adaptation and visual descriptions about assessments, was utilized to assist participants recall and retell their experiences. There were, however, challenges in gathering data on the assessment experiences of some participants. We describe how employing a “yarning” method for collecting data could benefit children and young people undergoing neurodevelopmental assessments in the future.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Disability “In-Justice”: The Benefits and Challenges of “Yarning” With Young People Undergoing Diagnostic Assessment for Fetal Alcohol Spectrum Disorder in a Youth Detention Center

et al. 2019

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“…By nature, research may constitute an uneven power balance between researcher and participant (Davison, 2004;Dickson-Swift et al, 2007;Duncombe & Jessop, 2012), but in intellectual disability research this asymmetry is often amplified by the cognitive and communicative impairments of people with intellectual disabilities. The paradigm of inclusive research questions this uneven power balance (Kellett & Nind, 2001;Mietola et al, 2017;Sigstad & Garrels, 2017;Stalker, 1998).…”

Section: Four Benefits Of Shadowingmentioning

confidence: 99%

“…While the use of interviews has been of great help in "bringing the unknown about people who have intellectual disability into the known" (Beail & Williams, 2014, p. 93), qualitative researchers have also frequently reported that their methods bring methodological and ethical challenges. These include problems with recruitment, such as finding (enough) research participants and achieving diversity amongst them (Nicholson et al, 2013); problems with acquiring informed consent, such as acquiescence amongst participants and determining whether prospective participants have the intellectual capacity to consent; problems with gathering information from people with intellectual disabilities, such as inarticulateness, unresponsiveness, difficulties with generalising from experiences and difficulties remembering or narrating dates and time (Booth & Booth, 1996;Corby et al, 2015;Hollomotz, 2018;Sigstad & Garrels, 2017); and ethical tensions around the power imbalance between researcher and participant, including misunderstandings amongst participants about the intent of research and the hope that the researcher comes to improve their life (Hollomotz, 2018;Nind, 2008;Sigstad & Garrels, 2017;Stalker, 1998).…”

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confidence: 99%

Shadowing as a qualitative research method for intellectual disability research: Opportunities and challenges

Weele

Bredewold

2021

Journal of Intellectual & Developmental Disability

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Background: While qualitative research on intellectual disability is on the rise, researchers have frequently reported that their methods bring methodological and ethical challenges. The authors advance shadowing as an alternative method to respond to these concerns. Method: The authors draw on their experiences with shadowing on the basis of two separate studies respectively, involving 28 and 17 people with intellectual disabilities. Results: Four distinct advantages of shadowing are presented: it is flexible, gives unique insight in daily life experiences, can aid in giving "voice" to people with intellectual disabilities, and can aid in the pursuit of inclusive research. Three challenges of shadowing research were also identified, relating to ethical approval, privacy and role confusion. Conclusions: Shadowing is a promising method for intellectual disability research, as it allows researchers to garner data virtually inaccessible with other methods. It is particularly useful for research questions about everyday life and interpersonal relationships.

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“…Brewster, 2004;Lloyd, Gatherer and Kalsy, 2006) concerns interviewing people with little or no speech. Even those who are able to communicate well may require special treatment (Sigstad and Garrels, 2018). Despite this attention to participant input, issues around inclusivity and understanding of data recording and reviewing have not been considered.…”

mentioning

confidence: 99%

The ‘Collaborative Personal Statement’: a more inclusive method of data-gathering than audio recording interviews with vulnerable people

Williams

2020

European Journal of Special Needs Education

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Inclusive research with people with learning disabilities often involves audiorecording interviews. However, although barely acknowledged in the literature, participants may not understand that every word recorded will be scrutinised forensically, from which possibly erroneous conclusions may be drawn. This paper describes an alternative method: the 'Collaborative Personal Statement' (CPS), which eschews the standard practice of making data gathering an unobtrusive, hidden audio-recording exercise in favour of dynamic interactive note-taking, in which participants' notes are read back to them, to be clarified, edited and augmented as part of interview sessions. The resulting narrative is also reviewed and finalised to produce the CPS. The paper argues that this obviates problems around, in particular, member checking, as participants are not burdened days later with the onerous task of examining and amending lengthy verbatim transcripts, often replete with various unflattering disfluencies. Also, the constant refining and clarification entailed in producing the CPS helps enable researchers to better explore, understand and analyse participant perspectives and meanings. To put the method into a research perspective, a case study of its use is outlinedthe creation of a 'living electronic archive' relating the use and impact of mobile technology on the lives of people with learning disabilities.Keywords: qualitative research, methods; recording interviews, inclusive research.'inclusive' refers to research in which participants are involved as co-designers, interviewers, data analysts and beneficiaries (Walmsley and Johnson, 2003;Williams, 1999). The concept of 'inclusive research' can 'be found predominantly in the field of learning disability research' (Nind, 2014: p3). Walmsley and Johnson, (2003) outline the characteristics that define inclusive research. These include making sure the 'research question, process and reports [are] accessible' (p64). Perhaps surprisingly, little consideration appears to have been given to the act of recording data accrued from participants. The issue is not simply 'how best to record data for the research', but 'how best to record data for the research in an inclusive manner'.There is, unsurprisingly, a growing body of work on data gathering (rather than recording). Much of it (e.g. Brewster, 2004;Lloyd, Gatherer and Kalsy, 2006) concerns interviewing people with little or no speech. Even those who are able to communicate well may require special treatment (Sigstad and Garrels, 2018). Despite this attention to participant input, issues around inclusivity and understanding of data recording and reviewing have not been considered. This paper redresses this imbalance, making the case for an alternative and arguably more inclusive approach: the 'Collaborative Personal Statement' (CPS). It begins with an account of the case for audio-recording, highlights the minimal discussion there has been on using this method with vulnerable participants and explores why, for some participants, ...

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Facilitating qualitative research interviews for respondents with intellectual disability

Cited by 23 publications

References 30 publications

Disability “In-Justice”: The Benefits and Challenges of “Yarning” With Young People Undergoing Diagnostic Assessment for Fetal Alcohol Spectrum Disorder in a Youth Detention Center

Disability “In-Justice”: The Benefits and Challenges of “Yarning” With Young People Undergoing Diagnostic Assessment for Fetal Alcohol Spectrum Disorder in a Youth Detention Center

Shadowing as a qualitative research method for intellectual disability research: Opportunities and challenges

The ‘Collaborative Personal Statement’: a more inclusive method of data-gathering than audio recording interviews with vulnerable people

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