The Journey of Caregivers of People With Mental Illness - A Exploratory Study in India

Background and Purpose:  Research shows that 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, detrimentally impacting caregiver's ability to look after ill family member. Most studies have looked at caregiver burden within the scope of developed nations. Understanding caregiver burden becomes particularly relevant in a developing country like India where, in the absence of institutional support, families bear primary caretaking responsibilities. Low education levels, lack of awareness and stigma associated with SMI exacerbate burden experienced by caregivers. Caregivers in India remain understudied, often 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. Further, many developing nations are experiencing changing demographics and disintegration of the traditional extended family which places primary family caregivers in an even more precarious situation. Within this backdrop of challenges faced by this population in a metropolitan city in India, a qualitative study was carried out 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. 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, 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. The study has policy and practice implications by highlighting 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.