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Mental Health and Community-Based Rehabilitation: A Qualitative Description of the Experiences and Perspectives of Service Users and Carers in Bangladesh

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Abstract

Since 2016, Promotion of Human Rights of Persons with Disabilities in Bangladesh (PHRPB) has been working to include people with psychosocial disabilities in their community-based inclusive development work, and to increase access to formal mental health care. Field visits were carried out to PHRPBD catchment areas in Dhaka and Chittagong for a case study on the integration of mental health into community-based rehabilitation (CBR). This paper synthesizes the results of twenty-five semi-structured interviews carried out as part of the case study. Participants included people with psychosocial disabilities, intellectual disabilities, epilepsy or other cognitive impairments and their carers as needed. Interviews were audio-recorded, transcribed and translated from Bangla to English, then hand-coded for content analysis. Results were organized into five overarching categories: (1) explanatory models, (2) help-seeking behaviors, (3) impact of services, (4) challenges and barriers to improving mental health, (5) recommendations of users and carers. Respondents either had no explanation for why service users had become unwell or attributed it to physically and/or emotionally traumatic events or supernatural causes. Before attending PHRPBD’s mental health services, most had visited formal or informal health care providers, often with disappointing results. Despite positive feedback on PHRPBD’s services, participants identified ongoing challenges. Stigma, discrimination and human rights abuses persist and are compounded by issues of gender inequality. Participants also identified barriers and made recommendations specific to the program itself, mainly regarding accessibility (e.g., cost, distance, frequency). This study adds to the limited body of qualitative research on mental health in Bangladesh, reinforcing previous findings on explanatory models and health-seeking behaviors while providing new insights into the impact of a CBR program in this context. Feedback of service users and carers suggests that CBR may indeed be a useful approach to increase access to services in Bangladesh for people with psychosocial or intellectual disabilities, epilepsy or other cognitive impairments. However, this program is not without its limitations, some of which are the product of broader issues within the mental health system and others of the social and cultural context. More research is needed to formally evaluate this and other CBR programs in the Global South.

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Acknowledgements

We are grateful to the study participants for sharing their stories with us. We would also like to thank the staff of CDD and partner organizations of PHRPBD who made this research possible—especially Rezaul Alam, who coordinated the fieldwork component. We acknowledge the contribution of four student researchers in the transcription and translation of the interviews: Dr. Rudbar Mahmood (RM), Dr. Lisanul Hasan (LH), Dr. Nadia Sultana Dolly (ND) and Dr. Mahmuda Najnin (MN). Finally, we wish to thank the co-investigators and advisory board members who helped to conceptualize the CBR case study project from which this study derived: Dr. Laura Asher, Dr. Alex Cohen, Dr. Joerg Weber, Soumana Zamo and Petra Kiel. icddr,b is grateful to the governments of Bangladesh, Canada, Sweden and the UK for providing unrestricted support.

Funding

Fieldwork for this study was funded through a grant by CBM International to the London School of Hygiene and Tropical Medicine.

Author information

Authors and Affiliations

  1. Health System and Population Studies Division, ICDDR, B, Dhaka, Bangladesh

    Kamrun Nahar Koly

  2. Department of Public Health, North South University, Dhaka, Bangladesh

    Rehnuma Abdullah & Fahima Akter Shammi

  3. Centre for Disability in Development, Dhaka, Bangladesh

    Taslima Akter

  4. Department of Primary Care and Mental Health, University of Liverpool, Liverpool, UK

    M. Tasdik Hasan

  5. CBM Global, Laudenbach, Germany

    Julian Eaton

  6. Centre for Global Mental Health, London School of Hygiene and Tropical Medicine, London, UK

    Julian Eaton & Grace K. Ryan

Authors
  1. Kamrun Nahar Koly
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  4. Taslima Akter
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Contributions

GR designed the tools and methods of data collection and carried out the fieldwork required to conduct the interviews, with logistical and translation support from TA. KK trained FS and RA to translate and transcribe the interviews. KK coded and analysed the data and drafted the manuscript with the assistance of FS and RA. GR and KK substantially edited and refined the manuscript, with assistance from JE, THD and TK in critically reviewing drafts. GR, JE and TA reviewed the analysis of the data and fact-checked information about PHRPBD. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Kamrun Nahar Koly.

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Conflict of interest

The authors of this study declared that they have no conflict of interest.

Ethical Approval

Ethical approvals were secured from the London School of Hygiene and Tropical Medicine (Ref. 14597) and the Bangladesh Medical Research Council (Ref. 14826092018) before any data were collected.

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Appendices

Appendix 1a. Interview Guides (English)

Discussion guide for beneficiaries:


CBR Case Study Interviews *Remember: Indicate gender and whether service user/carer on interview notes

  1. 1.

    Could you tell me a little bit about yourself? [For carers, ask these questions and then ask the same about the service user]

    1. a.

      Age

    2. b.

      Occupation

  2. 2.

    How was your journey here today to receive services?

    1. a.

      How long does it usually take you to come here?

    2. b.

      What mode of transportation do you use?

    3. c.

      Does someone normally come with you? Why or why not?

    4. d.

      How much does it cost? Is that affordable?

    5. e.

      Do you often encounter difficulties getting here?

  3. 3.

    What is the problem that you’re coming to services for? [For carers, ask these questions about the service user]

    1. a.

      How long have you had the problem?

    2. b.

      Did people treat you any differently when you started having the problem?

  4. 4.

    Can you tell me a little bit about the services you use here?

    1. a.

      How did you first learn of these services? What made you decide to come?

    2. b.

      How long have you been using these services?

    3. c.

      What normally happens here when you come for services?

    4. d.

      Are you always able to come to services when you need to? Why or why not?

    5. e.

      Are you always able to afford these services? Why or why not?

    6. f.

      Are you always able to take all of the medications that are prescribed? Why or why not?

  5. 5.

    What other services have you gone to for this problem?

    1. a.

      Have you ever gone to a spiritual or traditional healer? Why or why not?

    2. b.

      Have you ever gone to any other health services? Why or why not?

    3. c.

      Are there any other services that you are using currently? Why or why not?

  6. 6.

    What impact do you think this service has had on you? On your family? On your community?

    1. a.

      Do you have any recommendations of things that could be done better or differently, to improve these services?

Appendix 1b. Interview Guides (Bangla)

figure a

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Koly, K.N., Abdullah, R., Shammi, F.A. et al. Mental Health and Community-Based Rehabilitation: A Qualitative Description of the Experiences and Perspectives of Service Users and Carers in Bangladesh. Community Ment Health J 58, 52–66 (2022). https://doi.org/10.1007/s10597-021-00790-0

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