Background
Involvement of service users and caregivers, mainly in advocacy, service planning, service monitoring, and research, has been promoted globally as a strategy to help bolster health and quality of life of service users by improving their mental health. It is also advocated as a method to overcome human rights violations, systematic disempowerment and marginalization of persons with mental disabilities [
1‐
3]. The term “user and caregiver involvement” has become a buzzword that has been embedded in the policy and guidelines of many high income countries (HIC) [
4‐
7].
In HICs the service user and caregiver movement stems mostly from dissatisfaction with a paternalistic medical model of care that views patients as passive subjects unable to make their own decisions [
8]. Another driver has been the development of consumerist notions of health care that have brought about increased choices and voices for service users [
8,
9]. Various theoretical models and frameworks have been used to conceptualize and shape the involvement of service users and caregivers in health services. Arnstein’s “ladder of citizen participation” describes different degrees of participation in terms of different rungs, with citizen control at the highest rung followed by delegated power, partnership, placation, consultation, informing, therapy, and finally manipulation at the lowest [
10]. Similarly, Choguill’s ladder of participation in low and middle income countries (LMIC) [
11], and Hickey and Kipling’s participation continuum also explore the extent of service user involvement in decision making [
12]. Charles and DeMaio offer a three-dimensional framework that describes the key aspects and goals of lay participation in health care decision making [
13]. A more recent model of user involvement, proposed by Tritter and McCallum [
14], uses the image of mosaic tiles to represent the complex and dynamic relationships between users and other stakeholders in the involvement process.
The meaning and language of user involvement has also evolved and varied over the years. Rogers and Pilgrim described different conceptualizations of users based on their involvement: ‘users as patients’ (a traditional view where users are viewed as passive recipients of services), ‘users as consumers’ (where professionals view users not as objects but as consumers having power to make choices and provide opinions), ‘users as survivors’ (where users campaign collectively for their human rights), and ‘users as service providers’ (where users are involved in service delivery and service development) [
15].
While the practicalities of achieving involvement of service users and caregivers are still being deliberated, the importance of such involvement for better mental health care outcomes and responsive health systems is now well recognized [
16,
17]. Although limited, previous literatures have highlighted the relevance of service user and caregiver involvement in policy making [
6], service planning and delivery [
18‐
20], evaluation [
21,
22] and research [
23‐
25]. User and caregiver involvement in mental health is deemed crucial, as service users and caregivers are most able to understand the realities of life of other service users and caregivers, for example, with respect to stigma and discrimination, livelihood challenges and economic constraints [
26].
The World Health Organization (WHO), in a seminal report [
3], lauded the role of consumer and family movements in positively influencing mental health policies and practices. Such involvement is considered to be especially important in LMICs where weak national mental health systems are pervasive [
27,
28]. The importance of user and caregiver involvement was reinforced by the endorsement and ratification of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which calls for equal and full participation of persons with disabilities, including those with mental health conditions, in treatments and in the development of mental health laws, policies, and programs [
29].
Despite such high level endorsements, user and carer involvement in mental health care planning and delivery processes is mostly restricted to HICs [
2,
18]. However, even in a country like the UK, where recent policies and health service guidelines necessitates care plans to be formulated in conjunction with the user and carer groups, it is failing to be realized in practice to the satisfaction of carer and user groups [
30,
31]. In LMICs, such carer and service user involvement is mostly non-existent or weak and fragmented [
32,
33]. Instances of service user and caregiver participation have increased over the years in LMIC with the formation of users’ networks, groups, and organizations, as is seen in some African nations such as Uganda, Zambia, Kenya, and Tanzania [
34]. However, initiatives of such groups are rarely described in the literature [
35]. There are very few studies that delineate the extent and modes of such involvement in LMIC, and even though service user and caregiver involvement is touted by many governments and organizations, examples of best practices remain scattered. As a consequence, very little is known about effective ways to promote service user and caregiver involvement in mental health policy-making, planning, service monitoring, research and evaluation.
In Nepal, service user involvement, mainly in mental health promotion and advocacy, has recently received a boost through the establishment of national level service user organizations [
36] and through the signing of UNCRPD and its optional protocols by Nepal in 2008 [
37]. However, the experiences of service users and caregivers with respect to involvement, their achievements and struggles, and their views regarding effective ways to promote service user and caregiver involvement remain undocumented. This paper aims to assess the experiences and challenges of service users and caregivers regarding their involvement in mental health system strengthening processes in Nepal, including policy development, service planning, monitoring, and research, and to identify effective ways to enhance service user and caregiver involvement in system level processes.
Methods
Background and setting
This qualitative study is part of the Emerald programme (Emerging mental health systems in low and middle-income countries) that is being carried out in six countries: Ethiopia, India, Nepal, Nigeria, South Africa, and Uganda. Emerald seeks to identify key health system barriers to, and solutions for, the scaled-up delivery of mental health services in LMIC, and by doing so improve mental health outcomes in a fair and efficient way. One of the thematic areas of the project is to empower, equip and facilitate the involvement of service users and their caregivers to support mental health system strengthening [
38].
This study was carried out in the Kathmandu and Chitwan districts of Nepal. Service users and caregivers affiliated to user and caregiver organizations were mostly based in Kathmandu. Chitwan district was selected as a second site in order to understand the perspective of grassroots level mental health service users and caregivers from rural populations who have no affiliation to user networks or organizations. In Kathmandu district, participants for the study were approached through service user or caregiver organizations. In Chitwan district however, service users and their family members seeking mental health services at primary health care facilities as part of the Programme for Improving Mental Health carE (PRIME) [
39,
40] were recruited. The PRIME project aims to investigate the implementation and scaling-up of mental health care services into primary health care setting in five countries including Nepal. In Nepal, the project is being implemented by TPO Nepal, which is also the implementing organization for the Emerald project. As no mental health user groups or organizations exist in Chitwan district, grassroots level service users and caregivers were recruited through the PRIME project.
Sampling and data collection
Our study applied purposive sampling. A total of 24 key informant interviews were conducted, with the sample comprising service users who are referred as self-advocates affiliated to mental health organizations (n = 7), caregiver representative of a mental health organization (n = 1), mental health service users not affiliated to any organizations (n = 7), and the latter’s caregivers (n = 9). Seven participants were from Chitwan (4 males and 3 females) and 17 were from Kathmandu (13 males and 4 females). Nine study participants (37.5%) reported using mental health services (medicine and/or counseling) for 5 or more years, 21% of the participants used services for 1–5 years, 25% for less than a year while remaining (16.5%) declined to provide the information.
Data collection was carried out in 2014. Prior to the data collection, the research team (comprising of 6 researchers; 2 males and 4 females) received a one week training that included familiarization with the research design, research objectives and ethics, translation of the topic guides from English to Nepali, contextualization into Nepali culture, and interview role-plays. All the researchers involved in the data collection had more than 2 years of experience of conducting mental health research and were aware about nuances of interacting with individuals with mental health problems. To deal with any gender or cultural issues, the female participants were interviewed by female researchers while male participants were interviewed by males.
Semi-structured Key Informant Interviews (KIIs) were conducted in Nepali language. The interviews were conducted in the organizations where the mental health user advocates were affiliated in Kathmandu. In Chitwan district, the interviews were conducted at homes and health facilities (as suggested by the participant themselves). The Interview schedule consisted of demographic information and a topic guide that covered service user and caregiver involvement in four major areas of system strengthening processes: (a) policy making, (b) service planning and development, (c) monitoring, and (d) research. Interview guide used during the study is available as Additional file
1. Researchers were mobilized in pairs to conduct face-to-face interviews. Responses were mostly audio-recorded and, in cases where consent for audiotaping was not given, responses were noted manually. Participants were recruited in the study until no new additional information were emerging from the interviews. The researchers involved in the data collection process convened regularly to reflect on the nature and quality of information generated and if data saturation was achieved.
Data management and analysis
A framework approach was used for the analysis of the data [
41]. The interviews obtained through KIIs were first transcribed. The transcribed data, along with the manually recorded notes, were then translated into English by professional translators who had previous experiences of working in mental health area. A portion of the translated data (10%) was crosschecked against the original by the research supervisor (NU) who is fluent in both Nepali and English language.
For the development of a coding framework, two researchers first read and coded 40% of the data separately and identified an initial set of codes and emergent themes. These two separate sets of codes and themes were then compared with each other and discussed among the research team. Based on the discussion, a coding framework was generated, discussed, and finalized. QSR NVivo 10 software was used for indexing and charting of the data. The coding was carried out by two researchers and they met regularly to discuss any new issues and possible solutions to the interpretation of pre-existing codes. Coding comparisons were done based on the background characteristics of the research participants. Findings were compared between carers vs service users, service user advocates vs grassroots service user and males vs females. Any deviant information generated from coding comparison was reflected in the reporting of the findings. To check for the validity of the findings from the study, the final framework matrix generated after coding and analysis was discussed with the entire research team and with mental health survivor and advocate (NPG) to seek feedback on the emergent themes and descriptions.
Discussion
This study set out to explore experiences of service user and caregiver involvement in national mental health system strengthening processes and assess the barriers to, and strategies for, facilitating such involvement. The findings of this study show limited involvement of service users and caregivers in policymaking and health system strengthening processes in Nepal. Framed within Arnstein’s ladder of involvement, in policymaking, service users were informed and/or consulted on the draft policies. Service user involvement in Nepal, although present, is mainly limited to service users affiliated to organizations.
For caregivers, involvement in national mental health system strengthening is simply non-existent. This could be because both service providers and service users consider the caregiver’s role to be ‘less important and realized’ [
42]. Nevertheless, the importance of caregiver involvement has been highlighted [
3,
17,
43]. Caregivers are a vital part of the service system and often have different viewpoints from those of service providers and service users [
44]. A study conducted in Iran showed that caregivers could become effective case managers when provided with training [
45]. This study also shows the need for governmental and non-governmental organizations to take the initiative in promoting caregiver involvement in health system processes along with that of service users in Nepal.
Levels of involvement varied among non-affiliated service users and users affiliated to mental health organizations. The service users affiliated to mental health organizations, who also tended to be based in the capital city, reported more experiences of involvement compared to non-affiliated service users from rural areas. Building user groups and networks at village and district levels, as suggested by study participants, could be one strategy to involve other interested service users. Studies conducted in other countries also show that building user and caregiver group networks is necessary to support collective user action (for example, see [
6,
14,
46]). However, some study participants warned against
‘NGO-
isation’ of such groups and networks as this might alter the objectives and priorities of the organizations to compete in the donor driven market. The limited number of service user organizations, mostly concentrated around major cities and vying for increased funding and recognition, appeared to lead to narrow representation of service users and their issues at the grassroots level. This may be one of the reasons underlying the sense of mistrust and reservations towards NGOs repeatedly expressed by our study participants. Although NGOs have played a pivotal role in advocating for the rights of service users in mental health and lobbying for their involvement, the lack of consensus among NGOs has been identified as a key challenge to development of the mental health sector in Nepal [
47]. Hayward and Cutler [
48] also warn that competition and mistrust among NGOs is a major barrier to grassroots civil society. In contrast, grassroots groups such as self-help groups, with broader representation from mental health service users and caregivers, have been shown to foster empowerment, reduce stigma, and create a favorable environment to advocate for the rights of service users [
49].
Among the most recurrent barriers to involvement mentioned were low economic status and lack of awareness, information, and education. The majority of study participants from rural areas mentioned that economic constraints and accompanying time constraints were major barriers to becoming involved or to being interested in participating in system strengthening processes. Our participants’ demand for financial incentives resonates with findings of McDaid’s study [
50], which indicated that disparities in economic resources between service users and other participants in mental health policy and planning processes was one of the major barriers to equal participation of users. This suggests organizations and government that plan to engage service users and caregivers may need to provide stipends or other forms of economic support [
51‐
53].
Internalized self-stigma and within-group stigma among the service users and caregivers was also reported by participants in our study. Some believed that users with severe mental illness would not be able to participate and hence should not be selected as representatives, and some even stated that they themselves would not be able to contribute much in the system strengthening processes due to their illness. This may be, to some extent, due to self-stigma among service users, although this was not overtly expressed. Self-stigma has been linked with lower levels of empowerment and fear of disclosure among service users [
54]. Nepal’s government has tried to promote inclusiveness and tackle stigma through the creation of a disability quota for government positions. However, due to stigma, persons with mental disabilities fear disclosing their disability, and thus are often unable to compete for employment through the disability quota. This situation illustrates the complexity of confronting stigma and discrimination; in the anti-stigma programs of the government and mental health organizations, it is essential to address not only public stigma but also self-stigma. Highlighting the stories of service users who have disclosed their mental health problems and giving examples of their roles in system strengthening processes might be one effective strategy. Diversity and representativeness in service user involvement is a long standing issue that has been discussed in previous studies [
18,
55]. Our findings too indicate the need for increased diversity among service user representatives in terms of types of illness and demography. Decentralization of mental health services and promotion of community-based care could provide additional opportunities for service users from diverse demographics to participate in local processes. Community participation in decision-making, user empowerment and self-help, and a focus on public needs have been emphasized as characteristics of community based care [
56]. With the decentralization of power to communities, the voices of different community groups can be heard and a collective agency can be established to deal with problems [
27]. Similarly, integration of mental health into primary health care systems could also ensure some level of representativeness at local level by involving service users in the existing management committees of the primary health care centers. As integration of mental health in the public health system is being initiated in some districts by NGOs and government [
36], it is timely to consider ways of adapting approaches to service user/caregiver involvement to facilitate effective integration and strengthen the national mental health system.
Government initiative to reform policies was mentioned as another strategy to support service user and caregiver participation. Existing national documents on mental health refer to partnership among the government, International NGOs, and researchers, but do not mention involvement of service users and caregivers [
57,
58]. Many of our study participants complained that they had been invited to participate in trainings and research programs run by NGOs, but never in government-led programs. This lack of governmental initiatives to involve service users and caregivers and exclusion of this issue in policy documents contrasts with health sectors such as human immuno-deficiency virus (HIV)/acquired immune deficiency syndrome (AIDS) and tuberculosis, where service users are considered to be important actors of system development, and their inclusion is not only emphasised in policy documents, but also practiced [
59,
60]. This could be a result of high prioritization of these problems by the government in its national health strategy, and due to the existence of dedicated centers for these problems in the MoHP. Mental health, by contrast, lacks a separate unit in the MoHP, and there is ambiguity in the appointment of a focal point for mental health related activities, due to which any effort to coordinate with the government has resulted in confusion among mental health civil societies [
36]. The establishment of a coordinating body has been suggested as a way to facilitate the role of mental health NGOs in Nepal [
47], and this may also help service users and caregivers to raise their issues directly with the government.
Authors' contributions
MJ, NU designed the study and supervised data collection. DG, JM was involved in data collection, analysis. DG drafted the manuscript that was reviewed by NG, CH, MJ, NU. All authors read and approved the final manuscript.