From Caregiver Burden to Coping Mechanisms within Mental Illness - an Exploratory Journey in India

Background and Purpose: Family caregivers of people with severe mental illness (SMI) experience substantial hardships including emotional, social, and economic burden. Caregiver burden leads to diminished mental and physical health and eventual burnout, thus detrimentally impacting the caregiver's ability to look after the ill family member. While caregiver burden has been researched extensively in developed nations, studying it in a developing country like India becomes particularly relevant where, in the absence of institutional support, families bear primary caregiving responsibilities. Low education and awareness levels, and stigma associated with SMI exacerbate caregiver burden. Caregivers in India remain understudied, on the fringes of health care system with unmet needs. Not included in the treatment process of their family members, caregivers are woefully unprepared to deal with symptoms associated with SMI and this heightens the burden experienced. As developing nations are experiencing changing demographics and disintegration of the traditional extended family, primary family caregivers find themselves in a precarious situation. Against this challenging backdrop , a qualitative study was carried out in an Indian metropolitan city to gain an understanding of how burden is experienced by caregivers of people living with SMI and the coping strategies used to navigate the caregiving process. The specific aims included: a) to understand burden experienced during the caregiving process b) to explore the coping strategies adopted by the caregivers.

Methods: This exploratory qualitative study used semi –structured interviews with 25 participants. All participants had caregiving responsibilities towards a family member diagnosed with schizophrenia and were recruited via snowball sampling. Majority of the caregivers were parents (ages ranging from 31-77) and on an average, having had caregiving responsibilities for 13 years. The interview had 20 questions each. Interviews were audio-recorded, transcribed verbatim and analyzed based on principles of thematic analysis. Data were sorted according to emerging themes around how burden was experienced by caregivers and the different coping strategies used to mitigate burden.

Results: Burden due to ill member's distressing behavior and symptoms, ambiguity associated with SMI, concern for the future, shame, dealing with grief, and social isolation emerged as major themes around the experience of burden. Trying to find personal meaning within the caregiving process, acceptance of illness, using available social support and religion emerged as central themes around coping. Many participants highlighted the need for a common forum where they could share their experiences with people in similar situations without the fear of stigma and shame.

Implications: This study highlights the profound implications SMI has for caregivers given the urgent need to address burden experienced by them and also for the ill member, given the absence of institutional support structures. Policy and practice implications include the highlighted need for sustainable and affordable supportive health and community services for caregivers. Multi-family support groups, educational components within the treatment process to educate & engage caregivers may be valuable resources. In the future, the author intends to look at how explanatory models, and social networks impact caregiving experience and how community resources may inform interventions for this group.