Scoping review of health outcomes for people with disabilities in user-led organisations
Michael Crowe
A C * and Lorraine Sheppard B *
+ Author Affiliations
- Author Affiliations
A College of Healthcare Sciences (Physiotherapy), James Cook University, Townsville, Qld 4811, Australia.
B School of Health Sciences (Physiotherapy), University of South Australia, Adelaide, SA 5001, Australia.
C Corresponding author. Email: michael.crowe@jcu.edu.au
Australian Journal of Primary Health 27(5) 339-349 https://doi.org/10.1071/PY20193
Submitted: 18 August 2020 Accepted: 25 May 2021 Published: 15 October 2021
Journal Compilation © CSIRO 2021 Open Access CC BY-NC-ND
Abstract
A user-led organisation (ULO) may be defined as an organisation that is run and controlled by the people who use the services provided by that organisation. ULOs provide services to their members, such as information, advice, support, treatment and training. ULOs may also be involved in advocacy, influencing local service provision, government policy and public perceptions of disability. This scoping review concentrated on health outcomes achieved by ULOs for people with disabilities, including physical, sensory, cognitive, intellectual, neurological or mental health impairments. Based on a search of the academic literature up to 30 June 2020, 26 articles were included. Twenty-four articles were on ULOs for mood disorders, schizophrenia or psychosis, and there was one article each on ULOs for cross-disability and chronic non-malignant pain. There was some evidence that peer-run and inclusive ULOs for members with mood disorders, schizophrenia or psychosis can reduce the number of times people with these illnesses access traditional mental health services. There was no evidence that ULOs can replace traditional mental health services. Therefore, ULOs for mood disorders, schizophrenia or psychosis could be considered an adjunct to traditional mental health services, not a replacement. For other disabilities, a lack of evidence means that no recommendation can be made. However, the organisational structure of ULOs may be as important as the support and services offered.
Keywords: disability, advocacy, National Disability Insurance Scheme, NDIS, user-controlled, user-driven, peer-led, consumer-led.
References
Behler J, Daniels A, Scott J, Mehl-Madrona L (2017) Depression/bipolar peer support groups: perceptions of group members about effectiveness and differences from other mental health services. Qualitative Report 22, 213–236.Bott S, Sweeney A, Watts R (2010) A commissioner’s guide to developing and sustaining user-led organisations. Social Care Institute for Excellence, London. Available at https://www.scie.org.uk/publications/guides/guide36/assets/files/guide36.pdf [Verified 16 August 2021]
Brown LD (2009a) How people can benefit from mental health consumer-run organizations. American Journal of Community Psychology 43, 177–188.
| How people can benefit from mental health consumer-run organizations.Crossref | GoogleScholarGoogle Scholar | 19308724PubMed |
Brown LD (2009b) Making it sane: using narrative to explore theory in a mental health consumer-run organization. Qualitative Health Research 19, 243–257.
| Making it sane: using narrative to explore theory in a mental health consumer-run organization.Crossref | GoogleScholarGoogle Scholar | 19064718PubMed |
Brown LD, Shepherd MD, Merkle EC, Wituk SA, Meissen G (2008) Understanding how participation in a consumer-run organization relates to recovery. American Journal of Community Psychology 42, 167–178.
| Understanding how participation in a consumer-run organization relates to recovery.Crossref | GoogleScholarGoogle Scholar | 18597169PubMed |
Budge G, Mitchell A, Rampling T, Down P (2019) ‘It kind of fosters a culture of interdependence’: a participatory appraisal study exploring participants’ experiences of the democratic processes of a peer‐led organisation. Journal of Community & Applied Social Psychology 29, 178–192.
| ‘It kind of fosters a culture of interdependence’: a participatory appraisal study exploring participants’ experiences of the democratic processes of a peer‐led organisation.Crossref | GoogleScholarGoogle Scholar |
Doughty C, Tse S (2011) Can consumer-led mental health services be equally effective? An integrative review of CLMH services in high-income countries. Community Mental Health Journal 47, 252–266.
| Can consumer-led mental health services be equally effective? An integrative review of CLMH services in high-income countries.Crossref | GoogleScholarGoogle Scholar | 20512528PubMed |
Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A (2004) Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ (Clinical Research Ed.) 328, 1166–1170.
| Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions.Crossref | GoogleScholarGoogle Scholar | 15142921PubMed |
Goering P, Durbin J, Sheldon CT, Nelson G, Ochocka J, Krupa T (2006) Who uses consumer-run self-help organizations? The American Journal of Orthopsychiatry 76, 367–373.
| Who uses consumer-run self-help organizations?Crossref | GoogleScholarGoogle Scholar | 16981815PubMed |
Greenfield TK, Stoneking BC, Humphreys K, Sundby E, Bond J (2008) A randomized trial of a mental health consumer-managed alternative to civil commitment for acute psychiatric crisis. American Journal of Community Psychology 42, 135–144.
| A randomized trial of a mental health consumer-managed alternative to civil commitment for acute psychiatric crisis.Crossref | GoogleScholarGoogle Scholar | 18626766PubMed |
Henderson J, Battams S (2011) Mental health and barriers to the achievement of the ‘right to health’. Australian Journal of Primary Health 17, 220–226.
| Mental health and barriers to the achievement of the ‘right to health’.Crossref | GoogleScholarGoogle Scholar | 21896257PubMed |
Hutchison P, Arai S, Pedlar A, Lord J, Yuen F (2007) Role of Canadian user-led disability organizations in the non-profit sector. Disability & Society 22, 701–716.
| Role of Canadian user-led disability organizations in the non-profit sector.Crossref | GoogleScholarGoogle Scholar |
Janzen R, Nelson G, Hausfather N, Ochocka J (2007) Capturing system level activities and impacts of mental health consumer-run organizations. American Journal of Community Psychology 39, 287–299.
| Capturing system level activities and impacts of mental health consumer-run organizations.Crossref | GoogleScholarGoogle Scholar | 17447134PubMed |
Kelly JF, Hoffman L, Vilsaint C, Weiss R, Nierenberg A, Hoeppner B (2019) Peer support for mood disorder: characteristics and benefits from attending the Depression and Bipolar Support Alliance mutual-help organization. Journal of Affective Disorders 255, 127–135.
| Peer support for mood disorder: characteristics and benefits from attending the Depression and Bipolar Support Alliance mutual-help organization.Crossref | GoogleScholarGoogle Scholar | 31150942PubMed |
KPMG (2009) The contemporary disability service system: final report. Disability Policy & Research Working Group, Victorian Department of Human Services, Melbourne, Vic., Australia. Available at https://www.vgls.vic.gov.au/client/en_AU/search/asset/1161620/0 [Verified 16 August 2021]
Lewis SE, Hopper K, Healion E (2012) Partners in recovery: social support and accountability in a consumer-run mental health center. Psychiatric Services (Washington, D.C.) 63, 61–65.
| Partners in recovery: social support and accountability in a consumer-run mental health center.Crossref | GoogleScholarGoogle Scholar |
Morris J (2006) Centres for Independent Living or local user-led organisations: a discussion paper. Department of Health, London. Available at https://webarchive.nationalarchives.gov.uk/ukgwa/20090704042545/, http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_078838 [Verified 16 August 2021]
Munn-Giddings C, Boyce M, Smith L, Campbell S (2009) The innovative role of user-led organisations. A Life in the Day 13, 14–20.
| The innovative role of user-led organisations.Crossref | GoogleScholarGoogle Scholar |
National Disability Insurance Scheme (2019) ‘$100 million in community grants to empower people with disability.’ Available at https://www.ndis.gov.au/news/3489-100-million-community-grants-empower-people-disability
National Health Committee (2003) To have an ‘ordinary’ life: community membership for adults with an intellectual disability. National Advisory Committee on Health and Disability No. HP: 3686, Wellington, New Zealand. Available at https://www.moh.govt.nz/notebook/nbbooks.nsf/0/767269395A2349ABCC256DA2007133FD/$file/To-have-an-ordinary-life.pdf [Verified 16 August 2021]
Nelson G, Lomotey J (2006) Quantity and quality of participation and outcomes of participation in mental health consumer-run organizations. Journal of Mental Health (Abingdon, England) 15, 63–74.
| Quantity and quality of participation and outcomes of participation in mental health consumer-run organizations.Crossref | GoogleScholarGoogle Scholar |
Nelson G, Ochocka J, Janzen R, Trainor J (2006) A longitudinal study of mental health consumer/survivor initiatives: part 2 – a quantitative study of impacts of participation on new members. Journal of Community Psychology 34, 261–272.
| A longitudinal study of mental health consumer/survivor initiatives: part 2 – a quantitative study of impacts of participation on new members.Crossref | GoogleScholarGoogle Scholar |
Ochocka J, Nelson G, Janzen R, Trainor J (2006) A longitudinal study of mental health consumer/survivor initiatives: part 3 – a qualitative study of impacts of participation on new members. Journal of Community Psychology 34, 273–283.
| A longitudinal study of mental health consumer/survivor initiatives: part 3 – a qualitative study of impacts of participation on new members.Crossref | GoogleScholarGoogle Scholar |
Office for Disability Issues (2012) ‘ODI projects – Strengthening disabled people’s user-led organisations programme.’ Available at https://webarchive.nationalarchives.gov.uk/ukgwa/20130103055052/http://odi.dwp.gov.uk/odi-projects/user-led-organisations.php [Verified 16 August 2021]
Ostrow L, Hayes SL (2015) Leadership and characteristics of nonprofit mental health peer-run organizations nationwide. Psychiatric Services (Washington, D.C.) 66, 421–425.
| Leadership and characteristics of nonprofit mental health peer-run organizations nationwide.Crossref | GoogleScholarGoogle Scholar |
Pistrang N, Barker C, Humphreys K (2008) Mutual help groups for mental health problems: a review of effectiveness studies. American Journal of Community Psychology 42, 110–121.
| Mutual help groups for mental health problems: a review of effectiveness studies.Crossref | GoogleScholarGoogle Scholar | 18679792PubMed |
Powers LE, Ward N, Ferris L, Nelis T, Ward M, Wieck C, Heller T (2002) Leadership by people with disabilities in self-determination systems change. Journal of Disability Policy Studies 13, 126–134.
| Leadership by people with disabilities in self-determination systems change.Crossref | GoogleScholarGoogle Scholar |
Rogers ES, Teague GB, Lichenstein C, Campbell J, Lyass A, Chen R, Banks S (2007) Effects of participation in consumer-operated service programs on both personal and organizationally mediated empowerment: results of multisite study. Journal of Rehabilitation Research and Development 44, 785–799.
| Effects of participation in consumer-operated service programs on both personal and organizationally mediated empowerment: results of multisite study.Crossref | GoogleScholarGoogle Scholar | 18075937PubMed |
Salem DA, Reischl TM, Randall KW (2008) The effect of professional partnership on the development of a mutual-help organization. American Journal of Community Psychology 42, 179–191.
| The effect of professional partnership on the development of a mutual-help organization.Crossref | GoogleScholarGoogle Scholar | 18668362PubMed |
Salzer MS, Kundra LB (2010) Liability issues associated with referrals to self-help groups. Psychiatric Services (Washington, D.C.) 61, 6–8.
| Liability issues associated with referrals to self-help groups.Crossref | GoogleScholarGoogle Scholar |
Segal SP, Silverman CJ, Temkin TL (2010) Self-help and community mental health agency outcomes: a recovery-focused randomized controlled trial. Psychiatric Services (Washington, D.C.) 61, 905–910.
| Self-help and community mental health agency outcomes: a recovery-focused randomized controlled trial.Crossref | GoogleScholarGoogle Scholar |
Segal SP, Silverman CJ, Temkin TL (2011) Outcomes from consumer-operated and community mental health services: a randomized controlled trial. Psychiatric Services (Washington, D.C.) 62, 915–921.
| Outcomes from consumer-operated and community mental health services: a randomized controlled trial.Crossref | GoogleScholarGoogle Scholar |
Shaping Our Lives (2013) ‘About this site: definitions and meanings.’ Available at https://www.shapingourlives.org.uk/about/about-sol/definitions [Verified 16 August 2021]
Social Care, Local Government & Care Partnerships Directorate, Department of Health (2007) User-led organisations project. Department of Health, London. Available at https://webarchive.nationalarchives.gov.uk/ukgwa/20090501062629/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_078804 [Verified 16 August 2021]
Subramaniam V, Stewart MW, Smith JF (1999) The development and impact of a chronic pain support group: a qualitative and quantitative study. Journal of Pain and Symptom Management 17, 376–383.
| The development and impact of a chronic pain support group: a qualitative and quantitative study.Crossref | GoogleScholarGoogle Scholar | 10355217PubMed |
Taylor J, Jones RM, O’Reilly P, Oldfield W, Blackburn A (2010) The Station Community Mental Health Centre Inc.: nurturing and empowering. Rural and Remote Health 10, 1411
| The Station Community Mental Health Centre Inc.: nurturing and empowering.Crossref | GoogleScholarGoogle Scholar | 20701415PubMed |
Union of the Physically Impaired Against Segregation, Disability Alliance (1975) Fundamental principles of disability. London. Available at https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/UPIAS-fundamental-principles.pdf [Verified 16 August 2021]
Woodin SL (2006) Mapping user-led organisations. User-led services and centres for independent/ integrated/ inclusive living: a literature review prepared for the Department of Health. University of Leeds, Leeds, England. Available at https://disability-studies.leeds.ac.uk/library/author/woodin.sarah/ [Verified 16 August 2021]
