Stigma, lost opportunities, and growth: Understanding experiences of caregivers of persons with mental illness in Tamil Nadu, India

Abstract

This study aimed to address gaps in understanding of the lived experiences of caregivers of persons with mental illness in low-income countries. It was conducted among caregivers of persons with mental illness making use of a free non-governmental clinic in and around Chennai, India. The study adopted a qualitative methodology, with semi-structured interviews and life history exercises (n = 29) and six focus group discussions with caregivers (n = 21) and mental health professionals and community-based workers (n = 39). The experiences of caregivers were analyzed in the framework of “The Banyan model of caregiving,” which identifies six phases. Major themes in caregivers’ experience were: embarrassment and losing honor; fear; awareness; stigma and social exclusion; and reduced social interaction and loneliness. Posttraumatic growth considered as the result of caregiver experiences was found to consist mainly of personal growth and focusing on positive life experiences. Lost opportunities particular to the context of Tamil Nadu were described as the inability to get married, obtaining less education than desired, and loss of employment. Siblings faced lower levels of burden, while elderly mothers experienced especially high levels of burden and lack of happiness in life. Caregiver gains were identified as greater compassion for other people with disabilities, resulting in a desire to help others, as well as increased personal strength and confidence. Understanding the nuances of the caregiving experiences over time can provide a framework to devise more fine-tuned support structures that aim to prevent reductions in social interaction and lost opportunities, and improve a sense of meaning, in order to assist caregivers to continue providing care for their relatives with mental illness in a context with scarce mental health resources.

People with mental illness stigmatize mental illness less: A comparison study between a hospital-based sample of people with mental illness and a non-clinical general population sample in urban India

“…Third, due to limited mental healthcare services, informal unpaid care is widespread and assumed by family members (Seshadri et al, 2019;Thara et al, 1998), particularly women (Balaji et al, 2012;Chatterjee et al, 2014;Jagannathan et al, 2014). Yet this role is not socially valued, and caregivers, particularly women, lose opportunities for social connection, including marriage but also education and employment, do not benefit from any social support, and go through different phases of emotions and attitudes associated with their experience (Dijkxhoorn et al, 2019(Dijkxhoorn et al, , 2023Mathias et al, 2019). The caregiver's burden has been shown to be correlated with the severity of the pathology (Jagannathan et al, 2011(Jagannathan et al, , 2014.…”

Caregiver Experience from the Perspective of Men and Women: An Integrative Review

“…The care provided by men is influenced by the social stigma that is exerted on their masculine identity (20,21) and affected by gender norms and stereotypes regarding the fulfillment of their role. Traditionally, society has constructed a male role with traits of independence, competence, and the ability to protect and provide for the household (22).…”

Does the Nae Umeed group intervention improve mental health and social participation? A pre–post study in Uttarakhand, India

“…Across different disabilities, commonly identified predictors of higher caregiver ‘burden’ or poorer mental health in these studies include female gender (Kumar and Gupta, 2014 ; Mandowara et al, 2020 ; Madavanakadu et al, 2022 ), social isolation (Jagannathan et al, 2014 ; Bapat and Shankar, 2021 ), economic disadvantage (Bapat and Shankar, 2021 ; Madavanakadu et al, 2022 ), fewer years of education (Jagannathan et al, 2014 ; Mandowara et al, 2020 ; Bapat and Shankar, 2021 ; Menon et al, 2022 ) and higher care-needs (Brinda et al, 2014 ; Mandowara et al, 2020 ). Finally, societal stigma operates towards caregivers of people with particular disabilities such as epilepsy (Bapat and Shankar, 2021 ) and psychosocial disability (Mathias et al, 2015a ; Singh et al, 2016 ; Mathias et al, 2019 ; Dijkxhoorn et al, 2022 ), as well as towards the people they provide care for.…”