Ethical challenges of life story research with ex‐prisoners with intellectual disability

Ellem, Kathy; Wilson, Jill; Chui, Wing Hong; Knox, Marie

doi:10.1080/09687590802177064

Cited by 25 publications

(43 citation statements)

References 19 publications

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“…It is also an important time to check a person's willingness to be involved in life story work, as verifying informed consent with people with intellectual disability can be a continuous process (refer to researcher's other article on ethics of life story work (Ellem, Wilson, Chui, & Knox, 2008)). …”

Section: Building Relationshipsmentioning

confidence: 99%

Life Story Work and Social Work Practice: A Case Study With Ex-Prisoners Labelled as Having an Intellectual Disability

Ellem

Wilson

2010

Australian Social Work

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In common with other professions social workers have the power to articulate certain ''truths'' about the people who use their services (Hare Mustin, 1994). These knowledge statements about people, often situated in case files may become the only background information of the lived experience for people with disability (Gillman, Swain, & Heyman, 1997). Social workers need to develop interviewing, assessment and recording practices that give precedent to the worldview of service users, if they are to truly understand and respond effectively to people's lives (Bigby, 2007). One such way of doing this is by adopting a life story approach to working with vulnerable people, which can provide a holistic stance to a person's social reality (Ortiz, 1985). This article outlines the use of this approach in research with Queensland ex-prisoners who were labelled as having an intellectual disability. By explaining the process used by the first author (hereafter known as the researcher), the methodological findings of this study illustrate how life story work can contribute to social work practice.

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Section: Building Relationshipsmentioning

confidence: 99%

Life Story Work and Social Work Practice: A Case Study With Ex-Prisoners Labelled as Having an Intellectual Disability

Ellem

Wilson

2010

Australian Social Work

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“…Relationships with these qualities might be achieved by expecting researchers to get to know participants (Ellem et al, 2008;Malott, 2002;Stalker, 1998) and establishing the roles, identities, and contexts of both researchers and participants (Gilbert, 2004;McCarthy, 1998). Ending relationships at a pace in which participants do not feel exploited may equally achieve this goal (Stalker, 1998).…”

mentioning

confidence: 99%

“…Others recommend that research aims be informed by the social model of disability (Gilbert, 2004;Rodgers, 1999) and investigate research questions that promote dignity and humanity (Clegg, 2004;Diesfeld, 1999). Scholars also advise avoiding perpetuating negative stereotypes about people with intellectual and developmental disabilities (Becker, Roberts, Morrison, & Silver, 2004) and focusing instead on their opinions and experiences (Brigham, 1998;Ellem, Wilson, Hong Chui, & Knox, 2008;Rodgers, 1999). Others add that researchers should be honest about the research (Brigham, 1998), use participatory and visual methods (Boxall & Ralph, 2009), and provide supports to participants (Brodin & Renblad, 2000;Dalton & McVilly, 2004).…”

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confidence: 99%

“We Want Respect”: Adults with Intellectual and Developmental Disabilities Address Respect in Research

McDonald

2012

American Journal on Intellectual and Developmental Disabilities

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Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental disabilities on respect in research. Findings are consistent with disability rights' ideas and indicate that adults with intellectual and developmental disabilities have much to contribute to the discussion, that they value participating, and that they agree with calls to focus on human rights and dignity. Notably, participants spoke at lengths about the nature of interactions between researchers and participants. Implications are discussed, including how to infuse research standards with community-supported values and preferences.

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“…Professional networks facilitated and supported the process of obtaining identification and paperwork to be able to enter prisons, interview prisoners and tape the interviews. Other researchers have been refused this permission in Queensland (Ellem et al, 2008), and there is little doubt that personal and professional contacts assisted in this process.…”

Section: Strengths and Limitations Of The Studymentioning

confidence: 99%

“…The difficulty of gaining access to interview and tape record participants while incarcerated in Queensland has been documented elsewhere (Ellem, Wilson, Chui, & Knox, 2008). This study required significant negotiation and use of professional networks to achieve approval.…”

Section: Ethical Considerationsmentioning

confidence: 99%

Hoping Against Hope: The Prison-to-Community Transition Experience of Men With Co-Occurring Severe Mental Illness and Substance Use Disorder

Denton¹

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This thesis explores the prison-to-community transition experience after short-term incarceration, from the perspective of men with co-occurring mental illness and substance use disorder in Queensland, Australia. A specific focus was to examine the impact of systems and structures on the individual experience of transition. Prior research has established that people with co-occurring mental illness and substance use are overrepresented in the Australian prisoner population. It is also known that transition from prison to community for the general custodial population is a time of vulnerability, with increased risk of substance use, homelessness, unemployment, reincarceration and post-release death. All of these risks are compounded for prisoners with co-occurring disorders who are also at risk of a range of poor criminal justice outcomes and losing contact with mental health services after release.Review of the literature indicates a tendency for research to focus on recidivism as an outcome and emphasise either individual risk behaviour or social and structural factors influencing prison-to-community transition. Interventions during transition for the current population have traditionally been based on the criminalisation hypothesis, with a focus on increased provision of mental health services in prison and an emphasis on continuity of care in the community. There is a growing recognition in the international literature that the issues are much broader than mental illness; however, there is a lack of clarity as to how to respond to the complex needs of this population. Research exploring the perspective of men with cooccurring severe mental illness and substance use disorder during their prison-to-community transition experience has rarely been undertaken.The conceptual framework developed for this study shifts the emphasis away from recidivism towards recovery and wellbeing through a lens of individual action, but only in the context of the potential for systems and structures to impact on the ability of individuals to exercise agency. A qualitative method was used comprising repeat in-depth interviews with 18 men: within 1 month prior to leaving prison, within 2 weeks post-release and at 3 months postrelease. Three themes characterised the transition experience of participants: "hoping against hope"; "adrift in freedom"; and "the slippery slope". Participants reported leaving the predictable and routine life in prison where they hoped for a better life after release, to an uncertain, unstable and isolated environment in the community, eventually sliding into drug use, chaos and despair. The risk environment framework (Rhodes, 2009) and structuration theory (Giddens, 1984) were employed to understand how participants were caught in a complex dynamic between their individual risk behaviour and broader structural risk iii environments. This thesis proposes that a web of interrelated factors contributed to participants in the study as "ambivalent agents" who were suspended between the two worlds of priso...

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Ethical challenges of life story research with ex‐prisoners with intellectual disability

Cited by 25 publications

References 19 publications

Life Story Work and Social Work Practice: A Case Study With Ex-Prisoners Labelled as Having an Intellectual Disability

Life Story Work and Social Work Practice: A Case Study With Ex-Prisoners Labelled as Having an Intellectual Disability

“We Want Respect”: Adults with Intellectual and Developmental Disabilities Address Respect in Research

Hoping Against Hope: The Prison-to-Community Transition Experience of Men With Co-Occurring Severe Mental Illness and Substance Use Disorder

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