Reflections on access: too vulnerable to research?

Witham, Gary; Beddow, Anna; Haigh, Carol

doi:10.1177/1744987113499338

Cited by 34 publications

(43 citation statements)

References 44 publications

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“…Nevertheless, descriptions of gatekeeping and how protective power could be used by healthcare staff to restrict rather than safeguard patients’ opportunities to obtain improved services (Witham, Beddow, & Haigh, 2015) are not evident in the findings. Hence, it is noteworthy that in nine of the 15 studies recruitment was performed by the healthcare staff or clinicians (Barut et al, 2016; Bjørkedal et al, 2016; Jones et al, 2016; Kidd et al, 2016; Landon et al, 2016; Paul, 2016; Rhodes et al, 2016; Singh et al, 2016; van Langen et al, 2016).…”

Section: Discussionmentioning

confidence: 93%

Ethical and methodological issues in qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions: a critical review

Carlsson

Blomqvist

Jormfeldt

2017

International Journal of Qualitative Studies on Health and Well

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Undertaking research studies in the field of mental health is essential in mental health nursing. Qualitative research methodologies enable human experiences to become visible and recognize the importance of lived experiences. This paper argues that involving people with schizophrenia in research is critical to promote their health and well-being. The quality of qualitative research needs scrutinizing according to methodological issues such as trustworthiness and ethical standards that are a fundamental part of qualitative research and nursing curricula. The aim of this study was to critically review recent qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions, regarding descriptions of ethical and methodological issues in data collection and analysis. A search for relevant papers was conducted in three electronic databases, in December 2016. Fifteen qualitative interview studies were included and reviewed regarding methodological issues related to ethics, and data collection and analysis. The results revealed insufficient descriptions of methodology regarding ethical considerations and issues related to recruitment and sampling in qualitative interview studies with individuals with severe mental illness, putting trustworthiness at risk despite detailed descriptions of data analysis. Knowledge from the perspective of individuals with their own experience of mental illness is essential. Issues regarding sampling and trustworthiness in qualitative studies involving people with severe mental illness are vital to counteract the stigmatization of mental illness.

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Section: Discussionmentioning

confidence: 93%

Ethical and methodological issues in qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions: a critical review

Carlsson

Blomqvist

Jormfeldt

2017

International Journal of Qualitative Studies on Health and Well

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“…1 In particular, end of life care researchers have deliberated whether it is 'fair' to ask dying people to take part in research (Barnett, 2001) -including children and young people (Downing, 2016) -considering the potential for this to be burdensome (Milne & Lloyd, 2007). In doing so, they have also problematised how participants are defined by those outside of 'the field' -for example, ethics committees pre-asserting that end-of-life care or bereavement research is 'sensitive' and that participants are 'particularly vulnerable' (Addington-Hall, 2002;Witham, Beddow, & Haigh, 2013).…”

Section: Methodology Reflexivity and Death Studies: A Brief Outlinementioning

confidence: 99%

Introduction: researching death, dying and bereavement

Borgstrom

Ellis

2017

Mortality

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IntroductionAs early career researchers studying the end of life, we recognise that scholarly activity in the field of death studies -an umbrella term for research spanning all aspects of death, dying and bereavement, including end-of-life care -is growing in popularity. Since we completed our PhDs (less than 7 years ago), the number of UK universities offering courses on death-related topics has increased, mailing lists and online chat groups have multiplied, and the range of international seminars and conferences addressing topics in the field is expanding. This mounting interest in death studies makes this an opportune time to consider the methodological issues that doing research on death, dying and bereavement present.Mortality is a flagship journal in this interdisciplinary field. Read by both academics and practitioners, and with an increasingly international authorship and audience, it is an ideal space to consider contemporary methodological issues and challenges. As editors of this special issue, we have brought together a range of articles written by researchers which foreground and explore in detail matters pertaining to the study of death. As a collection, the articles seek to generate discussion about techniques, practices and sociocultural contexts of death research, and the implications that these have for knowledge production. Moreover, they intend to stimulate reflection on what is particular about engaging in death-related research specifically -teasing out key issues from more generic ongoing discussions about doing 'sensitive' (usually qualitative) research. In doing so, they offer practical tips and guidance -with the authors including key points and summary boxes at the end of each article. By placing these articles together and in dialogue with one another, we hope to encourage further substantive publications that deal with methodological aspects of death research, and that can continue these conversations.If we look at the genealogy of death studies (in English-speaking nations at least), there is a history of key periods of academic reflection and activity. For example, in the late 1960s and early 1970s (in the United States in particular), we saw a plethora of research in the field which produced seminal works that are still regularly cited in research, teaching and professional education today (e.

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“…Communication barriers can lead researchers to underestimate a person's cognitive capacity and sense of self (Witham, Beddow, and Haigh 2015). Having dementia presents challenges to a person's selfhood because it limits the ability to express individuality (Buller 2015b;Oneill 2013).…”

Section: Respect For Holistic Personhoodmentioning

confidence: 99%

Person-Oriented Research Ethics and Dementia:The Lack of Consensus

Silva

Cascio

Racine

2020

A&A

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Research ethics extends beyond obtaining initial approval from research ethics boards. The previously established person-oriented research ethics framework provides guidelines for understanding ongoing ethics throughout the tasks of a research project, in a variety of research contexts. It focuses primarily on the relational and experiential aspects of research ethics, organized around five guideposts: (1) focus on researcher-participant relationships; (2) respect for holistic personhood; (3) acknowledgment of lived world; (4) individualization; and (5) empowerment in decision-making. Given the widespread impact of dementia and the ethical challenges dementia research presents, conducting meaningful, ethical research is of high importance. This review explores this person-oriented framework in the context of dementia by examining existing literature on ethics practices in dementia research. We use a critical interpretive literature review to examine publications from 2013 to 2017 for content related to the five guideposts of person-oriented research ethics. While there is much literature addressing the relational and experiential aspects of research ethics, there is a lack of unanimous conclusions and concrete suggestions for implementation. We compiled practical recommendations from the literature, highlighting tensions and suggesting furthering evidence-based ethics research fieldwork to construct an accessible, easy-to-use set of guidelines for researchers that will assist in putting person-oriented research ethics into practice in dementia research.

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Reflections on access: too vulnerable to research?

Cited by 34 publications

References 44 publications

Ethical and methodological issues in qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions: a critical review

Ethical and methodological issues in qualitative studies involving people with severe and persistent mental illness such as schizophrenia and other psychotic conditions: a critical review

Introduction: researching death, dying and bereavement

Person-Oriented Research Ethics and Dementia:The Lack of Consensus

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