Improving detection of mental health problems in community settings in Nepal: development and pilot testing of the community informant detection tool

Challenges in reducing the global burden of disease attributable to neuropsychiatric disorders can be categorized into two groups: supply-side challenges and demand-side challenges. Jacobs et al. [1] define supply-side challenges as health system constraints hindering service uptake at the individual, household and community level and demand-side challenges as factors impeding individual, household, and communities’ timely use of health services. In this article, we focus on demand-side challenges and barriers to accessibility and availability of mental health services at the community level. Supply-side challenges refer to the lack of mental health services, especially in low-resource settings emblematic of low- and middle-income countries (LMIC) [2]. For example, there is an estimated gap of 1.18 million providers of mental health services in LMICs [3]. Supply-side challenges are being addressed predominantly through task-shifting, also known as task-sharing, models in which non-specialists including primary care and community health workers are trained to take on responsibilities typically in the purview of mental health specialists such as psychiatrists, psychologists, and clinical social workers [4, 5]. The World Health Organization mental health Gap Action Programme (mhGAP), which includes an intervention guide and training curricula on mental health for primary care workers, is a keystone approach to this endeavor worldwide [6]. Adopting this approach, the Programme for Improving Mental Health Care (PRIME) has mitigated supply-side challenges in Nepal through the integration of mental health services in the primary health care centres [7].

Unfortunately, as the supply-side issues begin to be addressed, there continue to be demand-side challenges in which persons with mental illness and their families do not seek mental health services [2, 7, 8]. Stigma associated with mental illness, lack of recognition of mental health problems and lack of awareness regarding where to go for treatment contribute to this under-utilization [8, 9]. In high-resource settings, where populations regularly interact with healthcare providers, detection of mental disorders is commonly based on assessments by trained personnel at health care facilities using structured screening tools [10]. However, in settings with limited health infrastructure and diverse cultural attitudes regarding the etiology of and appropriate ways of seeking help for mental illness, health facility-based screening may be inadequate to detect persons needing care. Moreover, in LMIC there is often a long delay in initiating treatment-seeking. One study in Nepal found that none of the women screening positive for maternal depression had sought care, even when the required service was available in local primary health facilities [11]. Another study found that the duration of untreated psychosis can average 2 years, and it is not uncommon to go more than 5 years without initiating treatment [12]. Delayed biomedical treatment-seeking may reflect a tendency to seek traditional healing services first as well as lack of experience identifying symptoms of mental health problems and lack of knowledge about available services for treatment. Therefore, reducing the delay in treatment-seeking is an important public health goal related to demand-side barriers.

An alternative approach proposed to increase access to care in LMIC is community case-finding [13]. This is done by identifying a case at the community level and then completing a referral to a health facility where a diagnostic interview by a trained health worker confirms diagnostic status and initiates treatment [14]. Community case finding by lay community workers, particularly in resource-poor settings, could be advantageous in several ways: community health workers have wide coverage [15]; they can mobilize patients to engage in services at health facilities; they are a sustainable resource with a strong knowledge of the local population’s health needs [16]; and they have higher acceptance from patients and their families than mental health specialists [17]. In Nigeria and India, a case-finding effort conducted by the community workers was found to be effective in identifying people with mental health problems [18].

To facilitate mental health problem identification at the community level in Nepal, we developed the Community Informant Detection Tool (CIDT) [19], an innovative and culturally appropriate tool for detection and referral of persons with one of four target mental health problems included in PRIME: depression, alcohol use problem, psychosis, and epilepsy. As child mental health problems are frequently neglected and children are rarely brought for care [20, 21], we added child behavioral problems to explore the potential for engaging children in services. The tool comprises of case vignettes for each mental health problem using local non-stigmatizing idioms accompanied by illustrations. Community informants are asked to match and specify the degree of matching of people in their surroundings with the prototype vignettes, determine the general impact on daily functioning, and assess willingness to seek care. The probable positive cases identified through the tool are encouraged to visit the health facility, where a clinical assessment is done by trained primary care health workers.

A recent validation study shows that this process of identifying and referring cases is effective for increasing utilization of mental health care in a Nepali context. The study found that 64% of the people identified as probable cases by community informants using the CIDT were actually diagnosed with a mental health problem in the clinical interviews [19]. Another study evaluating the CIDT highlights that two-thirds of the total cases identified by community informants using CIDT actually sought care and 77% of those who sought care initiated treatment at the health facility within 3 weeks [22]. These studies indicate that CIDT is appropriate and advantageous to use in resource-poor, rural communities and can be scaled up in similar contexts when culturally adapted. Researchers seeking to scale up the tool can follow the stepwise development process presented in this paper and adapt CIDT in their context. This paper also describes findings from the formative research which assessed the tool in three aspects: (a) comprehensibility- easily understood by people with basic literacy and is user friendly; (b) utility: usefulness of the tool to identify probable cases of mental health problems; and (c) feasibility: possibility to integrate the tool in routine work and to convince community members to seek care.

The Community Informant Detection Tool (CIDT) was developed with the aim of promoting help-seeking behavior of people with mental health problems through pro-active case finding in the community. We followed several steps including prioritization of the symptoms of five mental health problems based on the relevance of each symptom in the Nepali context; development of vignettes from the findings; a practice run followed by a qualitative study to explore feasibility and applicability using the tool in a real-life setting; and a survey to pilot test the tool. The tool consists of a vignette presenting common symptoms of each targeted mental health problem, where a community informant matches the symptoms of an individual with the prototype on a 5-point scale. A similar approach of “prototype diagnosis” has been found advantageous in clinical settings in the United States [29] but the tool described here is, to the best of our knowledge, the first of its kind to be used in a community setting in LMIC [19]. The use of local terms and idioms was further perceived to be easily comprehensible even by those with limited education. For easy usage in the community setting, the final layout of the tool was modified, colorful pictures depicting symptoms were added and yes/no response options were used for the additional two questions about “daily functioning impairment” and “need for support.” See “Additional file 1” for the finalized tool. This tool is deemed to facilitate detection at the community level followed by referral to a health facility where clinical assessment can be carried out.

In a resource-poor country like Nepal where mental health professionals are scarce, use of checklists for the purpose of screening may not be feasible since it requires mental health expertise [30]. This approach may further be problematic in LMICs because such checklists are usually developed in high-resource settings and lack sensitivity to local contexts. Kleinman [31] discusses that expression, experience and treatment of illness varies across cultures, emphasizing that these cultural attributes should not be ignored in psychiatry. A culturally sensitive intervention is effective in a manner such that it improves acceptance, detection and treatment adherence [5, 32]. We believe the CIDT provides an innovative and context-sensitive approach to case detection which accounts for local culture through the development of simple contextualized vignettes. Our study findings reconfirm that anyone with minimum literacy can use the tool to identify and refer potential mental health cases for treatment [19, 22]. However, there was some preference amongst the community informants regarding the right group to use the tool.

FCHVs and members of mothers’ groups were endorsed as the most appropriate people for using the CIDT. This may be because they are generally from the same community they work in and can mobilize people more effectively. FCHVs are the health volunteers mobilized by the Nepal government to tackle low utilization of services by increasing demand and access to care at the community level [33, 34] and members of mothers’ groups are oftentimes highly engaged in community development and social reform activities. Because of their involvement in community level activities, both groups have good networks and are also respected in their communities. Although FCHVs suggested mothers’ groups as the most appropriate for this task, mobilizing FCHVs to use the CIDT has several benefits. Because FCHVs are already a part of the government system, mobilizing them is more sustainable [33]. Further, they already carry out many health-related activities, hence they can integrate CIDT in their routine work. Unlike mothers’ group members, most FCHVs are literate and therefore can administer the tool more easily. Despite these advantages, only 28% of FCHVs in our study saw themselves as the appropriate group for this task. This could be because they are already overburdened with work and, since they are mobilized by the government as volunteers, they only receive a nominal amount as compensation. As indicated by our community informants, for motivation and quality of work, they need to be remunerated. Failure to pay them well may severely impact the program. It is noteworthy that a similar program in Uganda had to stop mobilizing community volunteers because of budget constraints [16]. Remuneration can be provided monetarily as a flat rate rather than on the basis of case referrals, which might pose risk of over-detection and over-referral.

While CIDT as a tool is comprehensible and feasible, the case vignettes for depression and behavioral problems were perceived as the most difficult ones for case identification. In the case of depression, this could be because (a) its symptoms are more related to mood and emotion, and its experiences are more subjective [35], (b) its symptoms are mostly expressed in terms of psychosomatic complaints [36, 37] and (c) it is often comorbid with other chronic illnesses [38‐41]. Contrastingly, our other study findings showed that the community informants more accurately detected depression than any of the other mental health problems when they were given a 1 day training, comprised of both theoretical and practical sessions [19]. In the case of behavioral problems, our community informants considered child behaviors such as disobedience, hyperactiveness, school truancy, picking fights with friends or family, and vandalizing things as normal for that age group. Many were unsure if such behaviors should be labeled as mental health problems requiring support from a mental health professional. Behavioral problems were understood more in terms of illicit drug use or substance use, with only children displaying these behaviors deemed in need of support, which is consistent with the findings of another study conducted particularly on behavioral problem in Nepal [20]. Therefore, a right story that is culturally relevant to the common community beliefs combined with clearer pictures for each subsequent symptom as suggested by the study findings could be a viable option. Also, community informants may not be effective at all times for the identification of all types of mental health problems. Eliciting information from the parents or other immediate contacts involved in the child’s care can be more advantageous in cases of behavioral problems since they can provide accurate and detailed information [42‐44].

The CIDT has already been validated and found effective for identifying people with potential mental health problems and promoting help-seeking behavior in Nepal [19, 22]. After the 2015 Nepal earthquakes, the CIDT was adapted for two additional conditions, suicide and post-traumatic stress, and was used in five earthquake affected districts covering a population of approximately 1 million [22]. We found that the CIDT approach could be rapidly adapted for other conditions. To employ CIDT in settings outside Nepal, we recommend a similar adaptation procedure to the one outlined here with regards to importance of identifying local idioms and piloting vignettes. Moreover, the ideal cadres are likely to vary from setting to setting. In Nepal, FCHVs had the most community contact. In other settings, this may be social workers, community mobilizers, or other health worker cadres. Therefore, contextualization should take into account who would be best positioned to employ this tool. It would be noteworthy if future researches focus on testing the feasibility of the tool in terms of cost and time requirements. A final important consideration is that CIDT appeared to work well in part because of lack of preexisting mental health literacy in the community and widespread availability of a human resource with strong community connections. In settings lacking such conditions, other approaches to facilitating treatment engagement may be more appropriate.

A context specific and culturally appropriate tool was developed by following a systematic approach to facilitate detection of five mental health problems in the community. Although CIDT is not an alternative to standard screening tools, it can play an important role in promoting help-seeking behaviors among people with potential mental health problems through early detection and referral at the community level. The tool is simple and can be used by anyone with limited literacy skills provided a brief training prior to its implementation is conducted. Considering the current workload of FCHVs as volunteers, provision of small incentives can increase their motivation to use the CIDT. Except for behavioral disorders in children, CIDT can be used by community informants to identify potential cases of the mental health problems targeted. Mobilizing children’s family member or primary caregiver is recommended for case detection of child behavioral problems.