‘Living in the community’ the pros and cons: A systematic literature review of the impact of deinstitutionalisation on people with intellectual and psychiatric disabilities

Abstract

Summary How did deinstitutionalisation affect the lives of people with intellectual disabilities and people with a psychiatric background? This paper contains a systematic literature review on the consequences of deinstitutionalisation for the target groups, their social network and society at large. PubMed and Online Contents were searched from 2004 till February 2016. Inclusion criteria were (1) article describes (a) consequence(s) of deinstitutionalisation, (2) in Western countries and (3) the target group(s) include people with psychiatric or intellectual disabilities. Sixty-one papers were found and analysed to establish positive, negative or mixed results. Findings The positive effects pertain to the quality of life of people with disabilities after deinstitutionalisation. They learned adaptive skills and receive better care. Negative effects relate to more criminal behaviour by the target groups, victimisation of the target groups and physical health issues. Life for the most severely afflicted people with disabilities deteriorated when they moved to smaller group homes in the community. Mixed effects were also found. It is not clear whether deinstitutionalisation leads to real inclusion in the community. It is equally unclear whether it is cheaper than large-scale institutional care. Only a few studies investigate the effects on family members but some show they are overburdened. Applications Social workers catering for people with disabilities should pay attention to risks for their health and safety and keep an eye on family members. Those who are asked to advise on deinstitutionalisation should consider that this may not benefit the most severely afflicted.

Tinkering as Collective Practice: A Qualitative Study on Handling Ethical Tensions in Supporting People with Intellectual or Psychiatric Disabilities

“…These values have gained prominence and are promoted in care models such as recovery-oriented care, rehabilitation or person-centered care (Farkas and Anthony 2010;Claes et al 2010;Rapp and Sullivan 2014;Farone 2006). Highlighted in these care models is the involvement of clients in care planning (Claes et al 2010;Anthony et al 2014), the support of clients in managing activities of daily living and participating in the community (Farkas and Anthony 2010;Dean et al 2016;Salzmann-Erikson 2013) and the move from institutional settings to supported independent living (de Heer-Wunderink et al 2012;McPherson, Krotofil, and Killaspy 2018;Bredewold, Hermus, and Trappenburg 2020). This focus on autonomy and community participation has increased the complexity of the care relationship, as is pointed out by care ethicists and shown in ethnographic research (Pols, Althoff, and Bransen 2017;Ferrier 2018).…”

Caring for Patients with Psychosis: Mental Health Professionals’ Views on Informal Caregivers’ Needs

“…Within the context of this reform—which was initiated in Greece in 1984—there was a focus on the social integration of people with mental disorders and thus new roles were given to the family caregivers [ 5 ]. The deinstitutionalization of patients and the reduction of in-hospital care have resulted in increased caring responsibilities for family caregivers [ 6 ]. The value of community based care for patients with psychotic syndrome has been highlighted in relevant literature as it is considered fundamental in reducing the number of hospitalizations and enhancing patient’s psychosocial function [ 7 , 8 ].…”

Does the length of institutionalization matter? Longitudinal follow‐up of persons with severe mental illness 65 years and older: shorter‐stay versus longer‐stay

“…International studies following the effects of deinstitutionalization on long‐stay patients, in particular, provide mixed results ranging from reports of improved social and psychiatric functioning (e.g., 10 , 11,12 ) to no changes (e.g., 13 ) or deterioration 14 ,. 15 These mixed results can be explained by not only different diagnoses but also different ages at baseline and different follow‐up periods 3 ,.…”