The early stages of psychosis pose a frightening
and challenging period for their caregivers. In India, the
majority of patients with psychosis live with their families,
who play an important role in patients’ care and treatment.
However, their experience in caring persons with psychosis or
help-seeking behaviors in the early stages of psychosis is largely unknown. Using a qualitative method, the present study
explored the experiences in caring and help-seeking in carers
of patients with first episode psychosis. In-depth audiotaped
interviews were conducted with 11 carers of patients with first
episode nonaffective psychosis. Purposive sampling was used
for data collection and content analysis was applied to the data.
The major themes explored were sequence of help seeking and
faith-healing practices, explanatory model of illness, illness
management strategies, financial burden, perceived stress and
stigma. Carers experienced shock, disbelief and anxiety about
the unexpected behavioural changes in patients during the
initial phase. The common pathway to ‘help seeking’ was
faith-healing. It resulted in substantial delays in accessing
psychiatric care and drain on family finances. Carers perceived
themselves as vulnerable and helpless when patients became
violent or demanding, refused to take medicines, experienced
sleep disturbance, and remained idle and suspicious. Further,
carers were hesitant to seek help due to their stigma attached to mental illness. Carers’ poor understanding and high stigma
caused substantial delays in seeking psychiatric treatment.
Caregivers experienced high levels of distress and difficulties.
Understanding carers’ experience and help-seeking behavior
may be important for planning and delivery of early intervention services for patients and carers.