Novel insights into patients' life-worlds: the value of qualitative research

Braun, Virginia; Clarke, Victoria

doi:10.1016/s2215-0366(19)30296-2

Cited by 117 publications

(116 citation statements)

References 7 publications

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“…However, given the lack of literature on non-completion for autistic students, this qualitative study adds value. As with all qualitative research, generalisability is not possible ( Braun & Clarke, 2019 ) – the themes identified are based only on these participants. There was also no direct comparison to non-autistic people, but research on non-autistic dropout is extensive, which enables comparisons with the literature.…”

Section: Discussionmentioning

confidence: 99%

“…In qualitative research, it is vital that the positionality of the researchers is acknowledged and discussed ( Braun & Clarke, 2019 ). E.C.…”

Section: Methodsmentioning

confidence: 99%

“…We both lean towards a social model of disability rather than medical model ( Shakespeare, 2006 ) and support the principles of neurodiversity ( den Houting, 2018 ). These philosophies affect the data interpretation, as should be acknowledged ( Braun & Clarke, 2019 ). The inclusion of both non-autistic and autistic perspectives enables us to analyse the participants’ experiences from both the ‘inside’ and ‘out’.…”

Section: Methodsmentioning

confidence: 99%

“…Qualitative research enables interpretation of autistic people’s experiences and can provide invaluable insight into their lives, but this methodology is frequently undervalued ( Bölte, 2014 ; Braun & Clarke, 2019 ). Given the paucity of research examining why autistic people are at higher risk of dropping out, qualitative research can generate new possibilities for future research.…”

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confidence: 99%

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Dropping out and moving on: A qualitative study of autistic people’s experiences of university

Cage

Howes²

2020

Autism

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Autistic people are at high risk of dropping out of university, but little research has examined this issue. Fourteen autistic people participated in semi-structured interviews examining their experiences at university and the reasons they had dropped out. Thematic analysis identified patterns in participants’ responses. Themes were categorised as systemic issues, challenges within university or life after dropping out. Systemic issues centred around accessing diagnosis, autism understanding, mental health and outsider status. Challenges at university included culture shock, becoming disengaged, lack of proactive support and perceived inevitability of dropping out. Finally, life after dropping out was characterised by processing of trauma and shame, and realisation of doing ‘what’s right for you’. Together, these themes suggest that many improvements could be made at universities, such as more proactive support and creating more accessible environments. Societal-level change is also needed to improve educational opportunities for autistic people. Lay abstract Many autistic people now go to university, but many of them also drop out of their studies. In fact, it is believed that autistic people are at higher risk of dropping out, but little research has been done to understand why this is happening. This research used interviews to take an in-depth look at 14 autistic people’s experiences of dropping out of university. All the things the participants talked about were examined closely by the researchers who identified common themes in what the participants discussed. The first set of themes captured some overarching issues faced by autistic people, such as difficulties with getting diagnosed, a lack of autism understanding, mental health challenges and feeling like an outsider. The next themes were organised within challenges faced at university, including a feeling of culture shock, becoming disengaged from one’s studies, a lack of proactive support from their university and a feeling that dropping out became inevitable. Finally, there were themes about life after dropping out, which involved a sense that the experience at university had been traumatic and shameful, but they believed people had to do what is right for them. All of these themes suggest that universities need to be better at supporting autistic people when they first come to university, and that they should actively offer clear support throughout and try and make the university environment more accessible for everyone, to ensure more autistic people have a positive university experience.

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Section: Discussionmentioning

confidence: 99%

“…In qualitative research, it is vital that the positionality of the researchers is acknowledged and discussed ( Braun & Clarke, 2019 ). E.C.…”

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

mentioning

confidence: 99%

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Dropping out and moving on: A qualitative study of autistic people’s experiences of university

Cage

Howes²

2020

Autism

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“…A qualitative focus group design was chosen to gain insight into participants' perspectives, experiences and expectations. 13 Using focus groups enabled respondents to interact with and respond to the ideas and comments of other participants. 14 Following best practice guidelines, 12 we used a theoretical framework to guide our focus group schedule.…”

Section: Methods Designmentioning

confidence: 99%

Perspectives of patients, carers and mental health staff on early warning signs of relapse in psychosis: a qualitative investigation

et al. 2019

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on behalf of the EMPOWER Research Group* Background Relapse prevention strategies based on monitoring of early warning signs (EWS) are advocated for the management of psychosis. However, there has been a lack of research exploring how staff, carers and patients make sense of the utility of EWS, or how these are implemented in context. AimsTo develop a multiperspective theory of how EWS are understood and used, which is grounded in the experiences of mental health staff, carers and patients. MethodTwenty-five focus groups were held across Glasgow and Melbourne (EMPOWER Trial, ISRCTN: 99559262). Participants comprised 88 mental health staff, 21 patients and 40 carers from UK and Australia (total n = 149). Data were analysed using constructivist grounded theory. ResultsAll participants appeared to recognise EWS and acknowledged the importance of responding to EWS to support relapse prevention. However, recognition of and acting on EWS were constructed in a context of uncertainty, which appeared linked to risk appraisals that were dependent on distinct stakeholder roles and experiences. Within current relapse management, a process of weighted decision-making (where one factor was seen as more important than others) described how stakeholders weighed up the risks and consequences of relapse alongside the risks and consequences of intervention and help-seeking. ConclusionsMental health staff, carers and patients speak about using EWS within a weighted decision-making process, which is acted out in the context of relationships that exist in current relapse management, rather than an objective response to specific signs and symptoms.

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New horizons and new opportunities for qualitative research to understand and improve mental health in later life

Lawrence

Samsi

Keady

2021

Int J Geriat Psychiatry

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Novel insights into patients' life-worlds: the value of qualitative research

Cited by 117 publications

References 7 publications

Dropping out and moving on: A qualitative study of autistic people’s experiences of university

Dropping out and moving on: A qualitative study of autistic people’s experiences of university

Perspectives of patients, carers and mental health staff on early warning signs of relapse in psychosis: a qualitative investigation

New horizons and new opportunities for qualitative research to understand and improve mental health in later life

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