Navigating Institutional Gaps: Lived Experiences of Family Caregivers Managing Chronic Psychosis in Zambia
Abstract:
Family
caregivers bear the burdens of managing chronic psychosis as critical yet
unrecognised partners in clinical decision making particularly in low resource
settings where institutional support is inadequate. Their support exceeds
beyond relational responsibility to include clinical decision making,
medication management and crisis management. The objective of the study was to
explore the experiences of caregivers on the roles, challenges and interactions
with the formal mental health services. The study recruited 30 participants
through purposive sampling and collected data using in-depth interviews. Data
were analysed using the interpretive phenomenological design by Smith et.al
(2009) criteria to identify superordinate and subordinate themes. Three overarching
themes were identified: 1) primary managers of treatment decisions, 2)
integrating biomedical and spiritual decision making, and 3) bearing clinical
responsibility without adequate support. The experiences highlight the central
role of caregivers in the management of psychosis within the limited mental
health services. In conclusion, caregivers should be recognised as core
stakeholders in clinical decision making rather than health seekers, as failure
to integrate them may endanger their wellbeing. This risk of mismanagement
could result from emotionally based decisions due to poor education on the
illness. There is need to continuously engage caregivers in care planning,
knowledge on adverse effects, provision of coping strategies and management of
psychosis. These findings provide a basis for mental health policy to structure
caregivers’ frameworks that include mandatory crisis guidance and to nursing
practice by incorporating routine assessments of caregiver wellbeing and
support as standard psychiatric care.
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