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Health services research
Research
Effect of deinstitutionalisation on quality of life for adults with intellectual disabilities: a systematic review
  1. Mary McCarron1,2,
  2. Richard Lombard-Vance3,
  3. Esther Murphy3,
  4. Peter May4,5,
  5. Naoise Webb6,
  6. Greg Sheaf7,
  7. Philip McCallion2,8,
  8. Roger Stancliffe9,
  9. Charles Normand4,10,
  10. Valerie Smith3,
  11. Mary-Ann O’Donovan11
  1. 1 Dean of the Faculty of Health Sciences, Trinity College Dublin, Dublin, Ireland
  2. 2 IDS TILDA, University of Dublin Trinity College, Dublin, Ireland
  3. 3 School of Nursing and Midwifery, University of Dublin Trinity College, Dublin, Ireland
  4. 4 Centre for Health Policy and Management, Trinity College Dublin, Dublin, Ireland
  5. 5 TILDA, University of Dublin Trinity College, Dublin, Ireland
  6. 6 National Learning Network, Institute of Technology Blanchardstown, Dublin, Ireland
  7. 7 Faculty of Health Sciences, University of Dublin Trinity College, Dublin, Ireland
  8. 8 College of Public Health, Temple University, Philadelphia, Pennsylvania, USA
  9. 9 Faculty of Health Sciences, University of Sydney, Sydney, New South Wales, Australia
  10. 10 Cicely Saunders Institute, King’s College London School of Medical Education, London, London, UK
  11. 11 Trinity Centre for People with Intellectual Disabilities, School of Education, University of Dublin Trinity College, Dublin, Ireland
  1. Correspondence to Dr Peter May; mayp2{at}tcd.ie

Abstract

Objective To review systematically the evidence on how deinstitutionalisation affects quality of life (QoL) for adults with intellectual disabilities.

Design Systematic review.

Population Adults (aged 18 years and over) with intellectual disabilities.

Interventions A move from residential to community setting.

Primary and secondary outcome measures Studies were eligible if evaluating effect on QoL or life quality, as defined by study authors.

Search We searched MEDLINE, PsycINFO, CENTRAL, CINAHL, EconLit, Embase and Scopus to September 2017 and supplemented this with grey literature searches. We assessed study quality using the Critical Appraisal Skills Programme suite of tools, excluding those judged to be of poor methodological quality.

Results Thirteen studies were included; eight quantitative studies, two qualitative, two mixed methods studies and one case study. There was substantial agreement across quantitative and qualitative studies that a move to community living was associated with improved QoL. QoL for people with any level of intellectual disabilities who move from any type of institutional setting to any type of community setting was increased at up to 1 year postmove (standardised mean difference [SMD] 2.03; 95% CI [1.21 to 2.85], five studies, 246 participants) and beyond 1 year postmove (SMD 2.34. 95% CI [0.49 to 4.20], three studies, 160 participants), with total QoL change scores higher at 24 months comparative to 12 months, regardless of QoL measure used.

Conclusion Our systematic review demonstrated a consistent pattern that moving to the community was associated with improved QoL compared with the institution. It is recommended that gaps in the evidence base, for example, with regard to growing populations of older people with intellectual disability and complex needs are addressed.

PROSPERO registration number CRD42018077406.

  • quality of life
  • intellectual disabilities
  • deinstitutionalisation

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2018-025735

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    Footnotes

    • Contributors MMC and PMC co-designed the original review protocol, oversaw all phases of the review process, and drafted and revised the paper. MMC is the guarantor. RLV and EM were lead researchers on all stages of the systematic review (title and abstract, full text, quality assessment, data analysis) and led authorship of the manuscript. PM co-designed the original review protocol, project-managed the review process and, drafted and revised the paper. NW conducted the grey literature search, and drafted and revised the paper. GS was the information specialist, co-designing and running the database searchers, and revising the paper. RS co-designed the original review protocol, advised and contributed throughout the review process as a topic expert, and drafted and revised the paper. VS co-designed the original review protocol, advised and contributed throughout the review process as a systematic review expert, and drafted and revised the paper. CN co-designed the original review protocol, advised and contributed throughout the review process as an economics expert, and drafted and revised the paper. M-AOD co-designed the original review protocol, led the grey literature search, advised and contributed throughout the review process as a topic expert, and drafted and revised the paper.

    • Funding The study was funded by the Department of Health (Ireland), with commissioning assistance by the Health Research Board (Ireland).

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement There are no unpublished data from this study. This is a systematic review that generates no new data. We make our results available in full in the manuscript. Further questions should be directed to the corresponding author.

    • Patient consent for publication Not required.