Autonomy, decision-making, and restrictive practices in daily life: evaluations by people with intellectual disabilities, families, and carers

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Sheerin, James
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University College Cork
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Background The United Nations Convention on the Rights of Persons with Disabilities emphasises the value of supporting independent decision-making for people with intellectual disabilities (PwID), which should be encouraged by service policies. However, support workers may need to limit freedom of PwID in the interest of safety and protection (Van der Meulen et al., 2018a). The present study aimed to investigate how people with moderate-severe ID perceive and evaluate restrictions in their daily lives, and understand their views in the context of those who support them. Method The present study used a qualitative methodology comprised of two focus groups with PwID, as well as semi-structured interviews with 11 support staff, and seven family members. A Patient and Public Involvement model was used to allow PwID to contribute to and give insight in designing interview questions and protocols, as well as interpreting results. Data from each participant group were analysed separately using the Braun and Clarke (2015) model of thematic analysis, using a reflexive, inductive approach. Results Three major themes were identified from the thematic analysis of PwID focus groups: Rules are rules; We’re not children; Institutionalisation. Four major themes were developed in analysis of support staff semi-structured interviews: Best interests; Institutionalisation; Ability and awareness; Official & unofficial restrictions. Four major themes were developed through thematic analysis of the family member semi-structured interviews: Ability and awareness; Institutionalisation; Living a good life; Basic vs psychological needs. Conclusions Findings indicated that health and safety are often prioritised over autonomy of PwID. PwID may be unlikely to self-advocate, as to speak out would threaten how they are perceived by staff, and subsequently how they views themselves. Data from the present study emphasised the need for extended individual discussions between support staff and PwID to elicit their opinions on the care they receive.
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Intellectual disability , Rights , Restrictive practices , Autonomy , Decision making , Family , Carers , Disability , Perceptions , Daily life
Sheerin, J. 2023. Autonomy, decision-making, and restrictive practices in daily life: evaluations by people with intellectual disabilities, families, and carers. DClinPsych Thesis, University College Cork.
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