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Table 4 Overview of qualitative data studies included in the review

From: Service user and caregiver involvement in mental health system strengthening in low- and middle-income countries: systematic review

Authors Countries involved Study design Participant group and sample size Area and level of service user involvement Type of evaluation of involvement (if any) Outcomesa Summary of findings Assessment of qualityb
Camatta et al. (2011) [20] Brazil Qualitative evaluation of secondary mental health service (in-depth interviews) 13 family members of secondary mental health services Evaluation of mental health services Qualitative evaluation of services (rather than of service user involvement) using in-depth interviews. Data were validated in a follow-up workshop with participants Other (perceptions/satisfaction): Interview data were categorised into predefined categories based on both internal and external dimensions of the service. Internal factors included: ambiance, characteristics of the provider team, therapeutic activities and family involvement. External factors included: Public policies (including provision and availability of mental health professionals and treatments), and the relationship between society and mental illness (including better integration of the CAPS service in the community and everyday life). The article concludes that it is important to give families a voice and to facilitate their collaboration in mental health care and system reform. Criteria 1, 4, 5, 6, 10, 11: Yes
Criteria 2, 3, 7, 8, 9, 12: No
Cohen et al. (2012) [25] Ghana Qualitative 18 self-help groups (SHGs), 5 NGOs, community mental health nurses, health service administrators Interviews with these groups/staff None Service user/caregiver: Clinical, social and economic outcomes, e.g. reasons for joining groups, perceived benefits of membership in groups, social inclusion, social and financial support, biomedical treatments SHGs have the potential to serve as key components of community mental health programmes in low-resource settings. The strongest evidence concerns how SHGs provide a range of supports, e.g. social, financial, and practical, to service users and caregivers. The groups also appear to foster greater acceptance of service users by their families and by communities at large. Membership in SHGs appears to be associated with more consistent treatment and better outcomes for those who are ill. Criteria 1, 2, 3, 4, 10, 11, 12: Yes
Criteria 5, 6, 7, 8, 9: No
Crabtree (2005) [15] Malaysia (UM) Ethnographic qualitative methods, in-depth interviews with numerous inpatients using ‘opportunistic sampling’. Staff accounts for insights into the ‘culture’ of hospital setting. Also, critical observation and hospital records over 18 months. Psychiatric service users, staff (sample size not mentioned) Interviews with service users None Other (attitudes): Staff attitudes towards patient ‘compliance’ and resistance to treatment; healing and spirituality Undisputed power of the medical profession in Malaysia has led to a lack of evolved ‘service-user’ perspective. Few patient rights are recognised, especially non-treatment. Paternalistic and custodial attitude does not acknowledge issues of spirituality/alternative healing practices important to hospitalised patients. Modernisation of services did not lead to parallel development of patient participation/cultural responses. Criteria 2, 4, 10, 11: Yes
Criteria 1, 3, 5, 6, 7, 8, 9, 12: No
De La Espriella & Caycedo Bustos (2013) [18] Colombia Literature/policy document review and qualitative focus groups and consultation meetings 40 service users, 40 family members and 33 health care professionals Service user involvement in development of policy/strategy; declaration of mental health patient’s duties and rights None System (study: development of policy): Qualitative data and document review to develop an institutional policy/declaration of mental health patients’ duties and rights (incl. user participation) Ten rights/policies were developed/adapted through consultation with service users and families, which ensured comprehensibility, clarity of terms, understanding and sufficient information. Criteria 1, 2, 4, 5, 10, 11, 12: Yes
Criteria 3, 6, 7, 8, 9: No
Kleintjes et al. (2013) [28] Ghana, Kenya, Rwanda, South Africa, Tanzania, Uganda, Zambia Semi-structured key informant interviews with leaders of mental health self-help organisations, plus documentary review 11 (4 women, 7 men) leaders of 9 self-help organisations for service users and carers Leaders of self-help organisations interviewed about their experience in the organisations; interview schedule was refined based on feedback from user advocates (and public sector mental health practitioners) None Other (study): Establishment and sustainability of mental health self-help organisations, e.g. leadership, membership, staffing, advocacy, vision and objectives of organisation Authors concluded that self-help organisations can provide crucial support to service users’ recovery in resource-poor settings in Africa. Support of other agencies can assist to build organisations’ capacity for sustainable support to members’ recovery. Criteria 1, 2, 3, 4, 5, 6, 7, 9, 10, 11, 12: Yes
Criteria 8: No
Nesnanov & Vasilyeva (2013) [31] Russia Survey by the Russian Psychiatric Association Mental health professionals and consumers (sample size not mentioned) Participation in survey None Other (satisfaction): Qualitative satisfaction data (on mental health care system) Majority of professionals and mental health consumers not satisfied with mental health care system in Russia today. Suggestions made to improve services and challenge stigma. N/A (as congress abstract)
Petersen et al. (2012) [24] South Africa Participatory implementation framework for development of mental health services for common mental disorders (CMDs) in a rural sub-district in South Africa as a case study. Qualitative process evaluation by interviewing service providers and users. Service providers and users (4 focus groups with 15 community mental health workers); 2 interviews with psychosocial group facilitators and 9 participants, 29 community members, 9 representatives from mental health services plus 2 community representatives Participation in interviews Involving community members in the development and delivery of psychosocial interventions for women with depression illustrated potential usefulness of community consultation in promoting cultural congruence. Community members well placed to provide local knowledge on interventions to mediate pathways to health and how to manage problems within the constraints of their cultural and material realities. Social support afforded by participation in groups can enhance participants’ individual coping capacities and personal empowerment, supporting previous evidence. System, service user/caregiver and other: Qualitative: 1) benefits and 2) challenges of community participation In addition to contributing to scaling up mental health services, community participation can potentially promote development of culturally competent mental health services and greater community control of mental health. Criteria 1, 2, 3, 4, 5, 6, 8, 9, 10, 11, 12: Yes
Criteria 7: No
Schilder et al. (2004) [29] Bulgaria (plus exploratory studies in India and Zambia) Field tests of focus group methodology in India and Zambia with final field test in Bulgaria. Consumers, family members, NGOs, professionals and government representatives (in Bulgaria: 15 service user, 6 carers, 5 mental health administrators, 11 medical students) Participation in focus groups Relatives seemed the most initially eager but dropped out the most. Other (study): Use and appropriateness of focus group methodology Use of focus groups proved appropriate in helping to clarify issues that could help substantiate data collection and comparison across different cultures and regions. A number of instrument questions were developed further based on the exploratory focus group work. Criteria 1, 3, 4, 6, 7, 10, 11, 12: Yes
Criteria 2, 5, 8, 9: No
  1. aHeadings in italics denote classification of outcomes in terms of ‘system-level’, ‘service user/caregiver’ level, or ‘other’
  2. bTwelve review criteria were used to assess the quality of qualitative studies. These were based on those suggested in the literature on qualitative research, as described in Harden et al. [12]. The twelve review criteria were as follows: 1. Were the aims and objectives clearly reported? 2. Was there an adequate description of the context in which the research was carried out? 3. Was there an adequate description of the sample and the methods by which the sample was identified and recruited? 4. Was there an adequate description of the methods used to collect data? 5. Was there an adequate description of the methods used to analyse data? 6. Were there attempts to establish the reliability of the data collection tools (for example, by use of interview topic guides)? 7. Were there attempts to establish the validity of the data collection tools (for example, with pilot interviews)? 8. Were there attempts to establish the reliability of the data analysis methods (for example, by use of independent coders)? 9. Were there attempts to establish the validity of data analysis methods (for example, by searching for negative cases)? 10. Did the study use appropriate data collection methods for helping people to express their views? 11. Did the study use appropriate methods for ensuring the data analysis was grounded in the views of people? 12. Did the study actively involve relevant groups in its design and conduct?