title: Service user involvement for mental health system strengthening in India: a qualitative study.
abstract: There is a wide recognition that involvement of service users and their caregivers in health system policy and planning processes can strengthen health systems; however, most evidence and experience has come from high-income countries. This study aimed to explore baseline experiences, barriers and facilitators to service user-caregiver involvement in the emerging mental health system in India, and stakeholders' perspectives on how greater involvement could be achieved.
  
  
  
  A qualitative study was conducted in Sehore district of Madhya Pradesh, India. In-depth interviews (n = 27) and a focus group discussion were conducted among service users, caregivers and their representatives at district, state and national levels and policy makers, service providers and mental health researchers. The topic guide explored the baseline situation in India, barriers and facilitators to service user and caregiver involvement in the following aspects of mental health systems: policy-making and planning, service development, monitoring and quality control, as well as research. Framework analysis was employed.
  
  
  
  Respondents spoke of the limited involvement of service users and caregivers in the current Indian mental health system. The major reported barriers to this involvement were (1) unmet treatment and economic needs arising from low access to mental health services coupled with the high burden of illness, (2) pervasive stigmatising attitudes operating at the level of service user, caregiver, community, healthcare provider and healthcare administrators, and (3) entrenched power differentials between service providers and service users. Respondents prioritised greater involvement of service users in the planning of their own individual-level mental health care before considering involvement at the mental health system level. A stepwise progression was endorsed, starting from needs assessment, through empowerment and organization of service users and caregivers, leading finally to meaningful involvement.
  
  
  
  Societal and system level barriers need to be addressed in order to facilitate the involvement of service users and caregivers to strengthen the Indian mental health system. Shifting from a largely 'provider-centric' to a more 'user-centric' model of mental health care may be a fundamental first step to sustainable user involvement at the system level.
authors.affiliation: Center for Chronic Conditions and Injuries, The Public Health Foundation of India, Plot No. 47, Sector 44, Institutional Area Gurgaon, Delhi, NCR 122002, India. sandesh.samudre@phfi.org.|Institute of Psychiatry, Psychology and Neuroscience, Health Services and Population Research Department, King's College London, PO29 David Goldberg Centre, De Crespigny Park, London, SE5 8AF, UK. sandesh.samudre@phfi.org.|The Public Health Foundation of India House No. 19, Rishi Nagar Char Imli, Bhopal, 462016, India. sandesh.samudre@phfi.org.
authors.forename: Sandesh
authors.identifier: 0000-0002-7297-0327
authors.initials: S
authors.lastname: Samudre
authors.affiliation: Center for Chronic Conditions and Injuries, The Public Health Foundation of India, Plot No. 47, Sector 44, Institutional Area Gurgaon, Delhi, NCR 122002, India.|Institute of Psychiatry, Psychology and Neuroscience, Health Services and Population Research Department, King's College London, PO29 David Goldberg Centre, De Crespigny Park, London, SE5 8AF, UK.
authors.forename: Rahul
authors.initials: R
authors.lastname: Shidhaye
authors.affiliation: Center for Chronic Conditions and Injuries, The Public Health Foundation of India, Plot No. 47, Sector 44, Institutional Area Gurgaon, Delhi, NCR 122002, India.|Institute of Psychiatry, Psychology and Neuroscience, Health Services and Population Research Department, King's College London, PO29 David Goldberg Centre, De Crespigny Park, London, SE5 8AF, UK.
authors.forename: Shalini
authors.initials: S
authors.lastname: Ahuja
authors.affiliation: Center for Chronic Conditions and Injuries, The Public Health Foundation of India, Plot No. 47, Sector 44, Institutional Area Gurgaon, Delhi, NCR 122002, India.
authors.forename: Sharmishtha
authors.initials: S
authors.lastname: Nanda
authors.affiliation: Center for Chronic Conditions and Injuries, The Public Health Foundation of India, Plot No. 47, Sector 44, Institutional Area Gurgaon, Delhi, NCR 122002, India.
authors.forename: Azaz
authors.initials: A
authors.lastname: Khan
authors.affiliation: Center for Chronic Conditions and Injuries, The Public Health Foundation of India, Plot No. 47, Sector 44, Institutional Area Gurgaon, Delhi, NCR 122002, India.|Institute of Psychiatry, Psychology and Neuroscience, Health Services and Population Research Department, King's College London, PO29 David Goldberg Centre, De Crespigny Park, London, SE5 8AF, UK.|London School of Economics and Political Science, Personal Social Services Research Unit, Houghton Street, London, WC2A 2AE, UK.
authors.forename: Sara
authors.initials: S
authors.lastname: Evans-Lacko
authors.affiliation: Institute of Psychiatry, Psychology and Neuroscience, Health Services and Population Research Department, King's College London, PO29 David Goldberg Centre, De Crespigny Park, London, SE5 8AF, UK.|Department of Psychiatry, Addis Ababa University, College of Health Sciences, School of Medicine, 6th Floor, College of Health Sciences Building, Tikur Anbessa Hospital, PO 9086, Addis Ababa, Ethiopia.
authors.forename: Charlotte
authors.initials: C
authors.lastname: Hanlon
mesh_terms: D000288:Administrative Personnel / Q000523:psychology; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology; D005260:Female; D017144:Focus Groups; D006282:Health Personnel / Q000523:psychology; D006291:Health Policy; D006297:Health Services Accessibility; D006801:Humans; D007194:India; D008297:Male; D008605:Mental Health Services / Q000458:organization & administration*; D008875:Middle Aged; D010358:Patient Participation / Q000523:psychology*; D036301:Qualitative Research; D013240:Stereotyping; D055815:Young Adult