Family care for persons with severe mental illness: experiences and perspectives of caregivers in Uganda

Abstract Background In low-income settings with limited social protection supports, by necessity, families are a key resource for care and support. Paradoxically, the quality of family care for people living with Severe Mental Illness (PLSMI) has been linked to support for recovery, hospital oversta...

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Main Authors: F. Verity, A. Turiho, B. B. Mutamba, D. Cappo
Format: Article
Language:English
Published: BMC 2021-05-01
Series:International Journal of Mental Health Systems
Subjects:
Online Access:https://doi.org/10.1186/s13033-021-00470-2
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author F. Verity
A. Turiho
B. B. Mutamba
D. Cappo
author_facet F. Verity
A. Turiho
B. B. Mutamba
D. Cappo
author_sort F. Verity
collection DOAJ
description Abstract Background In low-income settings with limited social protection supports, by necessity, families are a key resource for care and support. Paradoxically, the quality of family care for people living with Severe Mental Illness (PLSMI) has been linked to support for recovery, hospital overstay and preventable hospital readmissions. This study explored the care experiences of family members of PLSMI with patients at the national mental hospital in Kampala, Uganda, a low income country. This study was undertaken to inform the development of YouBelongHome (YBH), a community mental health intervention implemented by YouBelong Uganda (YBU), a registered NGO in Uganda. Methods Qualitative data was analysed from 10 focus groups with carers of ready to discharge patients on convalescent wards in Butabika National Referral Mental Hospital (BNRMH), Kampala. This is a subset of data from a mixed methods baseline study for YouBelong Uganda, undertaken in 2017 to explore hospital readmissions and community supports for PLSMI from the Wakiso and Kampala districts, Uganda. Results Three interrelated themes emerge in the qualitative analysis: a range of direct, practical care provided by the caregiver of the PLSMI, emotional family dynamics, and the social and cultural context of care. The family care giving role is multidimensional, challenging, and changing. It includes protection of the PLSMI from harm and abuse, in the context of stigma and discrimination, and challenging behaviours that may result from poor access to and use of evidence-based medicines. There is reliance on traditional healers and faith healers reflecting alternative belief systems and health seeking behaviour rather than medicalised care. Transport to attend health facilities impedes access to help outside the family care system. Underpinning these experiences is the impact of low economic resources. Conclusions Family support can be a key resource and an active agent in mental health recovery for PLSMI in Uganda. Implementing practical family-oriented mental health interventions necessitates a culturally aware practice. This should be based in understandings of dynamic family relationships, cultural understanding of severe mental illness that places it in a spiritual context, different family forms, caregiving practices and challenges as well as community attitudes. In the Ugandan context, limited (mental) health system infrastructure and access to medications and service access impediments, such as economic and transport barriers, accentuate these complexities.
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spelling doaj.art-fa6f14dab9964880af3cd2fe9acc59982022-12-21T22:32:41ZengBMCInternational Journal of Mental Health Systems1752-44582021-05-011511910.1186/s13033-021-00470-2Family care for persons with severe mental illness: experiences and perspectives of caregivers in UgandaF. Verity0A. Turiho1B. B. Mutamba2D. Cappo3College of Human and Health Sciences, Singleton, Swansea UniversityMakerere University College of Health SciencesButabika National Referral Mental HospitalYouBelongAbstract Background In low-income settings with limited social protection supports, by necessity, families are a key resource for care and support. Paradoxically, the quality of family care for people living with Severe Mental Illness (PLSMI) has been linked to support for recovery, hospital overstay and preventable hospital readmissions. This study explored the care experiences of family members of PLSMI with patients at the national mental hospital in Kampala, Uganda, a low income country. This study was undertaken to inform the development of YouBelongHome (YBH), a community mental health intervention implemented by YouBelong Uganda (YBU), a registered NGO in Uganda. Methods Qualitative data was analysed from 10 focus groups with carers of ready to discharge patients on convalescent wards in Butabika National Referral Mental Hospital (BNRMH), Kampala. This is a subset of data from a mixed methods baseline study for YouBelong Uganda, undertaken in 2017 to explore hospital readmissions and community supports for PLSMI from the Wakiso and Kampala districts, Uganda. Results Three interrelated themes emerge in the qualitative analysis: a range of direct, practical care provided by the caregiver of the PLSMI, emotional family dynamics, and the social and cultural context of care. The family care giving role is multidimensional, challenging, and changing. It includes protection of the PLSMI from harm and abuse, in the context of stigma and discrimination, and challenging behaviours that may result from poor access to and use of evidence-based medicines. There is reliance on traditional healers and faith healers reflecting alternative belief systems and health seeking behaviour rather than medicalised care. Transport to attend health facilities impedes access to help outside the family care system. Underpinning these experiences is the impact of low economic resources. Conclusions Family support can be a key resource and an active agent in mental health recovery for PLSMI in Uganda. Implementing practical family-oriented mental health interventions necessitates a culturally aware practice. This should be based in understandings of dynamic family relationships, cultural understanding of severe mental illness that places it in a spiritual context, different family forms, caregiving practices and challenges as well as community attitudes. In the Ugandan context, limited (mental) health system infrastructure and access to medications and service access impediments, such as economic and transport barriers, accentuate these complexities.https://doi.org/10.1186/s13033-021-00470-2Family careSevere mental illnessHospital dischargeCommunity healthUganda
spellingShingle F. Verity
A. Turiho
B. B. Mutamba
D. Cappo
Family care for persons with severe mental illness: experiences and perspectives of caregivers in Uganda
International Journal of Mental Health Systems
Family care
Severe mental illness
Hospital discharge
Community health
Uganda
title Family care for persons with severe mental illness: experiences and perspectives of caregivers in Uganda
title_full Family care for persons with severe mental illness: experiences and perspectives of caregivers in Uganda
title_fullStr Family care for persons with severe mental illness: experiences and perspectives of caregivers in Uganda
title_full_unstemmed Family care for persons with severe mental illness: experiences and perspectives of caregivers in Uganda
title_short Family care for persons with severe mental illness: experiences and perspectives of caregivers in Uganda
title_sort family care for persons with severe mental illness experiences and perspectives of caregivers in uganda
topic Family care
Severe mental illness
Hospital discharge
Community health
Uganda
url https://doi.org/10.1186/s13033-021-00470-2
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