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Table 2 Overview of quantitative 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
Aznar et al. (2012) [26] Argentina and Chile Development of a scale for the rights of people with intellectual disabilities (ID); cross-sectional comparison between people with ID and controls 37 participants in Delphi group; 51 in pilot study; 705 people with ID in Chile and 524 control University students People with ID and their families involved in the development of the scale (Delphi group and pilot study) None Other (study: scale development): Rights fulfilment score on the devised scale plus 10 individual items on scale; Cronbach’s alpha The scale may be an appropriate scale to monitor rights, though further development needed. Family relationships, community participation, living arrangements and level of disability affect experience of rights among people with ID. With structured supports, people with ID appear able to exercise their rights to a level comparable to peers without ID. weak
Malakouti et al. (2009) [22] Iran Non-randomised quasi-experimental intervention 12 psychology graduates, plus 9 Consumers’ Family Members (CFM) of people with schizophrenia trained as case managers, of which 6 persons (i.e. 12 in total) from each group were selected as case managers; 129 people with schizophrenia case managed Training of CFM to be a case management group with 6 family members case managing patients with schizophrenia CFM group had the potential to be trained as case-managers in mental health, especially if limited resources. Service user/caregiver: Number of hospitalisations of people case-managed by CFMs versus mental health workers plus caregiver burden, knowledge, Quality of Life, general health of caregivers; psychopathology and social skills of schizophrenia patients Most clinical variables were improved without significant differences between groups. The hospitalization rate was reduced by 67 %. Selection of family of people with severe mental illness should be done with scrutinized criteria considering the refusal rate of 35 % of the subjects in the CFM group (17 % in mental health workers). weak
McBain et al. (2012) [13] 63 LAMICs and country regions Data from countries that completed WHO’s Assessment Instrument for Mental Health Systems (WHO-AIMS); multiple regression analyses to investigate role of mental health legislation, human rights implementations, mental health care financing, human resources, and role of advocacy groups on availability and affordability of psychotropic medicines 63 countries/regions, and advocacy groups Study used ‘yes/no’ questions identifying whether associations of service users or people affected by mental illness were involved in the formulation of mental health legislation None System (country)-level: Access to psychotropic medicines (availability and affordability) (multiple regression analyses) Participation of family-based organizations in the development of mental health legislation associated with 17 % greater availability of psychotropic medication N/A (as between-country comparison rather than individual-level comparison)
Singh et al. (2005) [30] India Semi-structured questionnaire on efficiency, punctuality and behaviour of doctors and other staff, waiting time, supply of drugs, and cleanliness of hospital etc. 88 service users and 20 family members from National Drug dependence Treatment Centre Outpatients Answering of semi-structured questionnaire Not described Other (satisfaction data (service users and caregivers)): e.g. efficiency, waiting staff, quality of care, general atmosphere, stigmatisation, communication Over 90 % of patients and their attendants appreciated services provided. 90–94 % were satisfied with the supply of drugs, quality of clinical care and cleanliness of the hospital. Measures for improvement were also suggested. weak
Tripathy et al. (2010) [23] India Cluster-randomised controlled trial 36 clusters in three districts in Jharkhand and Orissa (18 clusters each per intervention and control arm); participants were women who were between 15 to 49 years old, living in the project area, and had given birth during the 3-year study period Women in intervention clusters participated in groups to support participatory action and learning for women, and to facilitate the development and implementation of strategies to address maternal and newborn health problems No direct evaluation of involvement, though women’s group intervention included an assessment cycle. Also health committees (with village representatives) and workshops with government health staff included a qualitative assessment by participants at the end of each training session. Service user: Primary outcomes: neonatal mortality rate (NMR); maternal depression scores. Secondary outcomes: stillbirths; maternal and perinatal deaths; uptake of antenatal and delivery services; home care practices during and after delivery; health-care-seeking behaviour. Women’s groups led by peer facilitators reduced NMR by 32 % during the 3 years overall and by 45 % in years 2 and 3, and moderate maternal depression by 57 % in year 3 (though no significant effect on maternal depression overall), at low cost in largely tribal, rural populations of eastern India. moderate
  1. aHeadings in italics denote classification of outcomes in terms of ‘system-level’, ‘service user/caregiver’ level, or ‘other’
  2. bThe ‘Quality assessment tool for quantitative studies’ by the ‘Effective Public Health Practice Project’ (EPHPP) [10, 11] was used for the assessment of quality and risk of bias (see also Studies were assessed according to i) likelihood of selection bias; ii) study design; iii) whether confounders were controlled; iv) whether blinding took place; v) validity and reliability of data collection methods; vi) number of withdrawals and drop-outs; vii) intervention integrity; and viii) methods of analyses. A global quality assessment rating of ‘strong’, ‘moderate’ or ‘weak’ was assigned based on the responses within each of those eight categories