Consent to participate in research by adults with intellectual disabilities – a systematic review of the literature and exploring the experiences of independent advocates and parents with intellectual disabilities following their involvement in child protection proceedings

Atkin, Charlotte Jane (2017). Consent to participate in research by adults with intellectual disabilities – a systematic review of the literature and exploring the experiences of independent advocates and parents with intellectual disabilities following their involvement in child protection proceedings. University of Birmingham. Clin.Psy.D.

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Abstract

This thesis comprises two volumes. Volume I presents research. Chapter one is a systematic review of studies investigating the ability of adults with intellectual disabilities (ID) to consent to participate in research. The review highlights the inconsistency and variation in findings in relation to consent ability, methods of providing research information and assessing ability to consent. A functional approach to consent is advocated, along with consideration of the relative benefits and risks of the research. Chapter two is an empirical paper examining the lived experiences of independent advocates and parents with ID in the context of child protection proceedings. The findings highlight the challenges advocates face and the key skills and qualities which underpin their work. Chapter three is a public dissemination document.

Volume II presents five Clinical Practice Reports (CPR). CPR 1 details behavioural and systemic case formulations of a man aged 21 with autism and ID, presenting with anxiety and social difficulties. CPR 2 describes a Single Case Experimental Design to evaluate an environmental enrichment intervention for a man aged 59 with moderate ID, Down Syndrome and dementia, presenting with anxiety and behaviours that challenge. CPR 3 details an evaluation of psychology ‘drop-in’ services in five acute inpatient mental health units in a West Midlands city. CPR 4 describes a case study of a girl aged 13 presenting with anxiety, depression and low self-esteem. CPR 5 outlines an abstract of an oral presentation of a case study of a woman aged 69 presenting with anxiety and depression.

Type of Work: Thesis (Doctorates > Clin.Psy.D.)
Award Type: Doctorates > Clin.Psy.D.
Supervisor(s):
Supervisor(s)EmailORCID
Kroese 1954-, Biza StenfertUNSPECIFIEDUNSPECIFIED
Licence:
College/Faculty: Colleges (2008 onwards) > College of Life & Environmental Sciences
School or Department: School of Psychology
Funders: None/not applicable
Subjects: B Philosophy. Psychology. Religion > BF Psychology
URI: http://etheses.bham.ac.uk/id/eprint/7399

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