Overcoming barriers to mental health care for children and adolescents in low- and middle-income countries

Innovation summary

Mental health services often go underutilized because of a low perceived need, negative attitudes towards seeking help, stigma, belief that formal care is not effective, and concerns about cost and confidentiality^1,2. The aim of this innovation is to increase contact coverage for children and adolescents in need of mental healthcare by increasing proactive detection and encouraging help-seeking in low- and middle-income countries. Through using a set of illustrated narratives, the Community Case Detection Tool (CCDT) supports trusted and engaged community members without prior mental health training (i.e. community gatekeepers) to proactively detect patterns of behavior as indicators of significant mental health needs and subsequently to encourage help-seeking.

Impact summary

52 children were detected using the CCDT in the first evaluation in school settings in oPt, of whom 77% were accurately detected as being in need of mental health care following a clinical interview with a mental health professional
92 children were detected in community settings in the second evaluation in Sri Lanka, out of whom 67% were accurately detected as being in need of mental health care
$26: the average costs to train one community gatekeeper and implement the tool for 12 months

“My work is people oriented, I work with village groups and associations. We do household visits so the problems in the households were easy for me to identify. Doing things for them gave me mental satisfaction.”

– Community Gatekeeper, Sri Lanka

Innovation details

The Community Case Detection Tool (CCDT) is developed to address the treatment gap by working with trusted and respected community gatekeepers. The CCDT is made up of illustrated narratives depicting common examples of children experiencing emotional, behavioral and/or family problems. These vignettes are paired with a simple decision algorithm that supports determining the severity and functional impact of the problems identified and advises the user of the tool about follow up action. In case of a positive match with one of the vignettes, the gatekeepers are trained to encourage and support help-seeking.

The accuracy of the tool has been evaluated in two different countries and settings: in the occupied Palestinian territories in school settings and in community settings in Sri Lanka. To determine accuracy of the tool children and adolescents detected were invited for a structured clinical interview with a psychologist to determine the need to access mental health treatment based on information provided during the clinical interview.

In future pilot studies, community gatekeepers using the tool will be trained in a brief motivational and barrier-reducing intervention, the ‘help-seeking encouragement strategy’. This strategy, currently under development, will build confidence to approach caregivers or adolescents and employs techniques to explore potential barriers and encourage help-seeking.

Key drivers

Community version of the ‘prototype-matching approach’: this prototype-matching approach was originally designed for clinicians to simplify diagnosis by presenting disorders as a short descriptive paragraph instead of a list of symptoms, allowing for mental representation of a coherent pattern, and has demonstrated comparable validity to other diagnostic algorithms^3,4. The approach was successfully adapted to community settings by Jordans and colleagues for the proactive detection of mental health needs among adults in Nepal⁵.

Use of local non-stigmatizing idioms: the vignettes in the tool represent coherent pattern of symptoms expressed in local non-stigmatizing idioms based on qualitative formative research with relevant stakeholders^5,6.

Gatekeeper approach: the gatekeeper model builds on the notion that all children, adolescents and caregivers have informal social exchanges more frequently than formal exchanges such as visiting a primary healthcare center. This means that informal gatekeepers (e.g. youth club leaders, community health volunteers or teachers) may be better positioned to detect youth in need of support. In addition, they may find it more comfortable to share their feelings with individuals they see on a regular basis and with whom they have built relationships over time⁷.

Entry to care: in general, caregivers or adolescents themselves tend to prefer more informal sources of support such as peers, family or community resources before considering help from professionals. Although these sources play an important protective and supportive role, they are often not adequate to meet demands posed by more serious mental health conditions. Our innovative approach takes these preferences into account and uses informal support systems - in the form of trusted and respected community gatekeepers - as entry points to care⁸.

Challenges

Potential risk of overburdening services: this proactive approach could present a risk of overburdening available services. Therefore implementation of proactive case detection is only ethical and safe in a setting where there is availability of follow-up assessment and services and where false detection is unlikely to cause significant harm or distress. Capacity of available services should be checked, a referral map should be in place and services should be informed about implementation of proactive case detection and a potential increase in referred cases

Urgent response needs: an adverse events reporting mechanism was in place during both evaluations. Similar response mechanisms should be in place in future projects where proactive case detection is implemented. Mental health and child protection professionals should be consulted in drafting the standardized responses and this should be an integrated part of the training of community gatekeepers

Intersecting demand-side barriers: in some cases, community gatekeepers hesitated to make detections and felt uncomfortable to approach a family, and some caregivers were reluctant to heed them because of prevalent beliefs, stigma towards mental health conditions and dynamics of distrust within communities sometimes led to concerns about confidentiality.

Limits to the role of gatekeepers: confidentiality measures restricted the role of gatekeepers in both settings to detection only, feedback from gatekeepers was that they missed a feedback loop regarding specific follow up actions and outcome for children as a result of their support in detection.

Approaching and building rapport with adolescents: feedback from gatekeepers in Sri Lanka was that the main challenge in approaching detected cases was with youth (14, 15, 16 years old). Often even caregivers were not able to encourage this group to speak with the gatekeepers.

Over identification and discomfort for false positives: comparing the risk of potential over-sensitivity with the potential preventive benefits, we considered the false positive rates acceptable. Proactive case detection overall is recommended to be implemented within a wider system of care; to mitigate the potential burden of false positives on children, adolescents or their caregivers. The CCDT and follow up assessment should ideally be offered within the normal routine of the school- or community setting, and assessment should not be expensive or stressful for the child or the caregiver.

Supply-side barriers: especially in Palestine a fragmented healthcare system, restricted access for Palestinians to basic services influenced willingness and motivation seek help.

Close knitted community structures vs confidentiality principles: in community settings in Sri Lanka some gatekeepers reported that they faced challenges with regards to questions posed by neighboring families of detected cases about the purpose of their visit. To prepare gatekeepers for such situations, the training includes a role-play session on ethical principles of proactive case detection which touches upon confidentiality measures. Furthermore, gatekeepers should be bound to a clear code of conduct and ethical implementation will need to be monitored throughout implementation.

Dynamic process of help-seeking: detection is a first and vital step in help-seeking, however caregivers and adolescents faced multiple subsequent barriers that affect motivation and actual help-seeking behavior.

Continuation

The next phase in development is to evaluate the effectiveness of the approach in increasing utilization of adequate mental health care services by children and adolescents detected through the CCDT. A brief motivational and barrier-reducing intervention, the ‘help-seeking encouragement strategy’ will be developed and added to the process of proactive case detection
If the results of this innovation prove successful, this tool will be an important contribution to the field of global mental health, which can easily be integrated into school systems or other existing services. There is potential for the tool to be applied to other universal interventions or group activities
Further research is being continued in Belize and Kenya through UNICEF

Partners

The Palestinian Counselling Center (West Bank)
The Eastern Self-Reliant Community Awakening Organization (Sri Lanka)

War Child would like to thank the partners involved in developing the original version of the tool, the Community Informant Detection Tool, as part of the Programme for Improving Mental Health Care (PRIME):

Transcultural Psychosocial Organization (Nepal)
George Washington University (US)

Evaluation methods

Design: To date, the detection properties of the CCDT have been evaluated in oPt and Sri Lanka. The primary purpose of these studies was to measure the accuracy of the CCDT in detecting children in need of mental healthcare treatment. Positive predictive value (PPV) was used as the measure to evaluate the accuracy. The PPV refers to the proportion of children positively detected using the CCDT, who are then found to be true positives. The main reference standard used in these studies to define a true positive was the need for mental healthcare confirmed by a mental health professional.

Methodology: Children and adolescents detected using the tool were invited for a structured clinical interview with a mental health professional to determine their need to access mental healthcare treatment. This indication for treatment, or need for mental healthcare treatment, was determined by the information gathered during the interview.

Cost of implementation

The average costs to train community gatekeepers and implement the tool for 12 months is $26 USD per gatekeeper.

Impact details

Results of the accuracy evaluation were promising. In school settings in oPt, out of the 52 children detected using the CCDT, 77% were accurately detected as being in need of mental healthcare following a clinical interview with a mental health professional. In the second pilot evaluation in community settings in Sri Lanka, 92 children were detected out of whom 67% were accurately detected.

The tool supported the process of detecting children and adolescents in need of support in a variety of ways. During the training in Sri Lanka, some gatekeepers shared that before the training they were only able to detect high risk cases. The vignettes and decision algorithm supported them to support children earlier on. Teachers shared that the training and tool raised awareness about certain normalized emotions and behaviors in their context of working. In addition, the tool and process strengthened collaboration and clarified roles between teachers and school counsellors. Teachers in oPt shared that they were motivated when they observed small improvements as a result of their work. Furthermore the community gatekeepers in Sri Lanka shared that because of their respected and trusted role in the community and the proactive approach that the CCDT employs, that the tool was easy to integrate into their daily activities.

Although neither the sample size nor the study design allows for strong inferences on specific diagnoses, it is interesting to note that a slightly higher percentage of internalizing cases were detected in both evaluations. Internalizing problems are generally less frequently detected by gatekeepers compared to externalizing problems^9,10.

References

1. Andrade LH, Alonso J, Mneimneh Z, et al. Barriers to Mental Health Treatment: Results from the WHO World Mental Health (WMH) Surveys. Psychol Med 2014;44:1303–17.

2. Gulliver A, Griffiths KM, Christensen H. Perceived barriers and facilitators to mental health help-seeking in young people: A systematic review. BMC Psychiatry 2010;10:113.

3. Westen D, DeFife JA, Bradley B, et al. Prototype Personality Diagnosis in Clinical Practice: A Viable Alternative for DSM-5 and ICD-11. Prof Psychol Res Pract 2010;41:482–7.

4. Westen D. Prototype diagnosis of psychiatric syndromes. World Psychiatry 2012;11:16–21.

5. Jordans MJD, Kohrt BA, Luitel NP, et al. Accuracy of proactive case finding for mental disorders by community informants in Nepal. Br J Psychiatry 2015;207:501–6.

6. Subba P, Luitel NP, Kohrt BA, et al. Improving detection of mental health problems in community settings in Nepal: Development and pilot testing of the community informant detection tool. Confl Health 2017;11:1–11.

7. Lipson SK, Speer N, Brunwasser S, et al. Gatekeeper Training and Access to Mental Health Care at Universities and Colleges. J Adolesc Heal 2014;55:1–16.

8. Bradshaw C, Nguyen A, Kane JC, et al. Social Inclusion of Youth with Mental Health Conditions. A report prepared for the United Nations, Division for Social Policy and Development, New York. 2013.

9. Levitt JM, Saka N, Hunter Romanelli L, et al. Early identification of mental health problems in schools: The status of instrumentation. J Sch Psychol 2007;45:163–91.

10. Siceloff ER, Bradley WJ, Flory K. Universal Behavioral/Emotional Health Screening in Schools: Overview and Feasibility. Rep Emot Behav Disord Youth 2017;17:32–8.