Service user and caregiver involvement for strengthening the mental health service in India

Student thesis: Master's ThesisMaster of Philosophy

Abstract

Background
Globally, the movement for the service user involvement in the mental health systems began about four decades ago. Although there have been many initiatives taken up at policy and research levels for the service user involvement in high income countries, less has been done in the low- and middle-income countries like India in this regard. Sound empirical evidence on the outcomes of mental health service user and caregiver involvement remains underdeveloped in many low and middle-income countries, including India, and information is lacking on how to translate this globally acquired knowledge into practice.

People with mental health problems in India are in a serious need of basic mental health care which is accessible, acceptable and feasible to them and their families. In a country with a population of 1.3 billion people, providing universal quality mental health care is a challenging task. Particularly the lack of a trained human resource in India is a major challenge to scaling up quality mental health care. Since emergence of ASHA as a community health worker, a notion of community based human resource supporting the public health system has evolved as a prominent success story in the Indian public health domain. Therefore, the discourse on the involvement of mental health service users and caregiver in the mental health service is most relevant and synonymous with community involvement and lay health worker participation to strengthen the Indian mental health service.

India’s National Mental Health Policy launched in 2014; encourages service user and caregiver involvement in the mental health system and the revised Mental Health Act passed in 2017 stipulates clear guidelines for service user and caregiver involvement. Yet there is no specific operational plan to implement and improve service user and caregiver involvement in the revised National Mental Health Programme. This thesis aims to investigate current service user and caregiver involvement in the Indian mental health system and explores challenges that restrict service user and caregiver involvement, and facilitator strategies that can potentially increase service user and caregiver involvement to strengthen the mental health service in India.

Methods
The MPhil thesis comprises two studies conducted in a sequential manner. The first study is a systematic review that aims to present critical review of the evidence and experience of involvement of mental health service users and caregivers and members of community in the Indian mental health system.

The second study is the cross-sectional exploratory study conducted in the study site of Sehore district in Madhya Pradesh State, a centrally located province in India. The qualitative exploratory study aims to explore the perspectives of the mental health service users-caregivers and the mental health service providers concerning involvement of service users and caregivers in the mental health service in India. The methods used in the qualitative study were in-depth interviews and a focus group discussion. A total of 32 in-depth interviews were conducted: 10 with mental health service users, six with their caregivers and 16 with the mental health service providers providing public mental health services to these service users. One focus group discussion (FGD) was conducted with a group of mental health service users and their caregivers. There were 16 participants in the FGD of which six were service users and 10 participants were caregivers.

Results
The results from a systematic review demonstrate that in the Indian mental health system although there is good evidence for the involvement of community members and relatively moderate and scattered evidence for the involvement of caregivers, the evidence for the involvement of mental health service uses is weak.

As a result of the weak mental health service user involvement, the evaluation aspect of the service user’s involvement is absent. Most of the evidence for the community involvement is the collective type of involvement. 

In the absence of basic mental health care, conceptualisation of service user and caregiver involvement is found difficult among both the groups of the qualitative study participants-service providers and service users-caregivers. The results from the qualitative study note that overarching stigma has emerged as the most important barrier to greater involvement and requires immediate measures to mitigate. Caregiver led support groups, facilitator-oriented self-help groups and empowerment of service users-caregivers are found to be expedient strategies for greater involvement of service users and caregiver in the mental health service in India.

Conclusions
This thesis puts forward an important statement that involvement of mental health service users and caregivers is not a new concept in the Indian mental health system but certainly a forgotten and discarded one. The thesis offers evidence on why involving mental health service users and caregivers in the Indian mental health system is necessary to strengthen the system starting with the improvement in the mental health service. 

This thesis denotes that mental health service providers are willing and are in agreement to involve mental health service users and caregiver to improve mental health service. Yet mostly, neither mental health service providers nor service users-caregivers could discern what involvement means and what are the methods or strategies to start the involvement process.

The thesis recommends a three-pronged strategy to attain optimum service user involvement in the mental health service delivery in India. The first strategy is to treat involvement as an evolving process instead of one-time activity. The second strategy is to start involving users from the planning stage of the mental health services. The third and most important strategy is to evaluate with scientific rigour every aspect of user involvement process and effect of such involvement in the mental health service in India. 
Date of Award1 May 2020
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorGraham Thornicroft (Supervisor), Tatiana Salisbury (Supervisor), Sara Evans-Lacko (Supervisor) & Mirja Koschorke (Supervisor)

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