Service user and care giver involvement in mental health system strengthening in Nepal: a qualitative study on barriers and facilitating factors

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Abstract

Background

Service user and caregiver involvement has become an increasingly common strategy to enhance mental health outcomes, and has been incorporated in the mental healthpolicies of many developed nations. However, this practice is non-existent or fragmented in low and middle income countries (LMICs). Instances of service user and caregiver involvement have been rising slowly in a few LMICs, but are rarely described in the literature. Very little is known about the context of user and caregiver participation in mental health system strengthening processes in a low-income, disaster- and conflict-affected state such as Nepal.

Methods

This study explores (a) the extent and experiences of service user and caregiver involvement in policy making, service planning, monitoring, and research in Nepal; (b) perceived barriers to such involvement; and (c) possible strategies to overcome barriers. Key Informant Interviews (n = 24) were conducted with service users and caregivers who were either affiliated to a mental health organization or receiving menta health care integrated within primary care. Purposive sampling was employed. Data collection was carried out in 2014 in Chitwan and Kathmandu districts of Nepal. Data analysis was carried out in NVivo10 using a framework approach.

Results

The involvement of service users affiliated to mental health organizations in policy development was reported to be ‘tokenistic’. Involvement of caregivers was non-existent. Perceived barriers to greater involvement included lack of awareness, stigma and discrimination, poor economic conditions, the centralized health system, and lack of strong leadership and unity among user organizations. Increased focus on reducing public as well as self-stigma, improved policy frameworks and initiatives, and decentralization of care are some strategies that may facilitate service user and caregiver involvement.

Conclusion

The study highlighted need for user and caregiver networks free from competing interests and priorities. Improved policy frameworks and decentralization of care may support meaningful service user and caregiver involvement.

Electronic supplementary material

The online version of this article (doi:10.1186/s13033-017-0139-1) contains supplementary material, which is available to authorized users.

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Most cited references 48

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Patients' perspectives on electroconvulsive therapy: systematic review.

P. Fleischmann, Til Wykes, Diana Rose … (2003)

To ascertain patients' views on the benefits of and possible memory loss from electroconvulsive therapy. Descriptive systematic review. Psychinfo, Medline, Web of Science, and Social Science Citation Index databases, and bibliographies. Articles with patients' views after treatment with electroconvulsive therapy. 26 studies carried out by clinicians and nine reports of work undertaken by patients or with the collaboration of patients were identified; 16 studies investigated the perceived benefit of electroconvulsive therapy and seven met criteria for investigating memory loss. The studies showed heterogeneity. The methods used were associated with levels of perceived benefit. At least one third of patients reported persistent memory loss. The current statement for patients from the Royal College of Psychiatrists that over 80% of patients are satisfied with electroconvulsive therapy and that memory loss is not clinically important is unfounded.

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WPA guidance on steps, obstacles and mistakes to avoid in the implementation of community mental health care.

Graham Thornicroft, Atalay Alem, Renato Antunes Dos Santos … (2010)

This paper provides guidance on the steps, obstacles and mistakes to avoid in the implementation of community mental health care. The document is intended to be of practical use and interest to psychiatrists worldwide regarding the development of community mental health care for adults with mental illness. The main recommendations are presented in relation to: the need for coordinated policies, plans and programmes, the requirement to scale up services for whole populations, the importance of promoting community awareness about mental illness to increase levels of help-seeking, the need to establish effective financial and budgetary provisions to directly support services provided in the community. The paper concludes by setting out a series of lessons learned from the accumulated practice of community mental health care to date worldwide, with a particular focus on the social and governmental measures that are required at the national level, the key steps to take in the organization of the local mental health system, lessons learned by professionals and practitioners, and how to most effectively harness the experience of users, families, and other advocates.

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Mental health care in Nepal: current situation and challenges for development of a district mental health care plan

Nagendra P. Luitel, Mark JD Jordans, Anup Adhikari … (2015)

Background Globally mental health problems are a serious public health concern. Currently four out of five people with severe mental illness in Low and Middle Income Countries (LMIC) receive no effective treatment. There is an urgent need to address this enormous treatment gap. Changing the focus of specialist mental health workers (psychiatrists and psychologists) from only service delivery to also designing and managing mental health services; building clinical capacity of the primary health care (PHC) workers, and providing supervision and quality assurance of mental health services may help in scaling up mental health services in LMICs. Little is known however, about the mental health policy and services context for these strategies in fragile-state settings, such as Nepal. Method A standard situation analysis tool was developed by the PRogramme for Improving Mental health carE (PRIME) consortium to systematically analyze and describe the current gaps in mental health care in Nepal, in order to inform the development of a district level mental health care plan (MHCP). It comprised six sections; general information (e.g. population, socio-economic conditions); mental health policies and plans; mental health treatment coverage; district health services; and community services. Data was obtained from secondary sources, including scientific publications, reports, project documents and hospital records. Results Mental health policy exists in Nepal, having been adopted in 1997, but implementation of the policy framework has yet to begin. In common with other LMICs, the budget allocated for mental health is minimal. Mental health services are concentrated in the big cities, with 0.22 psychiatrists and 0.06 psychologists per 100,000 population. The key challenges experienced in developing a district level MHCP included, overburdened health workers, lack of psychotropic medicines in the PHC, lack of mental health supervision in the existing system, and lack of a coordinating body in the Ministry of Health and Population (MoHP). Strategies to overcome these challenges included involvement of MoHP in the process, especially by providing psychotropic medicines and appointing a senior level officer to facilitate project activities, and collaboration with National Health Training Centers (NHTC) in training programs. Conclusions This study describes many challenges facing mental health care in Nepal. Most of these challenges are not new, yet this study contributes to our understanding of these difficulties by outlining the national and district level factors that have a direct influence on the development of a district level mental health care plan. Electronic supplementary material The online version of this article (doi:10.1186/s13031-014-0030-5) contains supplementary material, which is available to authorized users.

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Author and article information

Contributors

Dristy Gurung:

ORCID: http://orcid.org/0000-0003-1839-9382

drishtyg@gmail.com , dgurung@tponepal.org.np

Nawaraj Upadhyaya: nupadhaya@tponepal.org.np , navarajtpo@gmail.com

Jananee Magar: jmagar@tponepal.org.np

Nir Prakash Giri: nirprakashgiri3@gmail.com

Charlotte Hanlon: Charlotte.hanlon@kcl.ac.uk

Mark J. D. Jordans: mark.jordans@warchild.nl , mark.jordans@kcl.ac.uk

Journal

Journal ID (nlm-ta): Int J Ment Health Syst

Journal ID (iso-abbrev): Int J Ment Health Syst

Title: International Journal of Mental Health Systems

Publisher: BioMed Central (London )

ISSN (Electronic): 1752-4458

Publication date (Electronic): 19 April 2017

Publication date PMC-release: 19 April 2017

Publication date Collection: 2017

Volume: 11

Electronic Location Identifier: 30

Affiliations

[1 ]Transcultural Psychosocial Organization (TPO) Nepal, Baluwatar, GPO Box 8974, Kathmandu, Nepal

[2 ]GRID grid.429145.f, , HealthNet TPO, ; Amsterdam, The Netherlands

[3 ]Nepal Mental Health Foundation (NMHF), Lazimpat, GPO Box 557, Kathmandu, Nepal

[4 ]ISNI 0000 0001 2322 6764, GRID grid.13097.3c, , Institute of Psychiatry, Psychology and Neuroscience, Centre for Global Mental Health, King’s College London, ; London, UK

[5 ]ISNI 0000 0001 1250 5688, GRID grid.7123.7, Department of Psychiatry, School of Medicine, College of Health Sciences, , Addis Ababa University, ; PO 9086, Addis Ababa, Ethiopia

[6 ]War Child Holland, Helmholtzstraat 61-G, 1098 LE Amsterdam, The Netherlands

Author information

Dristy Gurung http://orcid.org/0000-0003-1839-9382

Article

Publisher ID: 139

DOI: 10.1186/s13033-017-0139-1

PMC ID: 5395761

PubMed ID: 28428815

SO-VID: 2a2383be-8c00-428c-ab47-7cba49b21b72

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 26 October 2016

Date accepted : 11 April 2017

Funding

Funded by: FundRef http://dx.doi.org/10.13039/501100004963, Seventh Framework Programme;

Award ID: 305968

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ScienceOpen disciplines: Neurology

Keywords: service user and caregiver,patient involvement,stigma,empowerment,nepal

Data availability:

ScienceOpen disciplines: Neurology

Keywords: service user and caregiver, patient involvement, stigma, empowerment, nepal

Service user and care giver involvement in mental health system strengthening in Nepal: a qualitative study on barriers and facilitating factors

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Most cited references 48

Patients' perspectives on electroconvulsive therapy: systematic review.

WPA guidance on steps, obstacles and mistakes to avoid in the implementation of community mental health care.

Mental health care in Nepal: current situation and challenges for development of a district mental health care plan

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