Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal

Abstract

Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.Conclusions and Implications: This study underscores the need for integrated community-based approaches that are multisectoral, inclusive of family, and strengthen community responses. Photovoice was also shown to be a feasible research methodology for providing insights into the lived experience of people with psychosocial disability and for fostering their empowerment.

Social inclusion and exclusion of people with mental illness in Timor-Leste: a qualitative investigation with multiple stakeholders

“…agricultural and domestic tasks) that contributed to intergenerational well-being and hence actively promoted their sense of belonging [59]. Contribution to livelihoods was identified by people with mental illness in India and Nepal, other communitarian contexts, as an important aspect of social inclusion [26]. Despite their minimal formal involvement in disability persons organisations, some people with mental illness have benefited from participation in the burgeoning disability-rights movement in Timor-Leste, which promotes the availability of the disability pension and CBR course.…”

“…theory, prevalence, experiences of, and interventions) from low-and middle-income countries (LMICs) is sparse, which is problematic because explanatory models and consequences of mental illness, and the extent of stigma and social exclusion, differ across cultures [6,24]. The communitarian orientation of many LMICs locates responsibility for the individual, their illness and stigma with the family [24][25][26]. There is an emerging body of evidence related to social inclusion and exclusion of people with mental illness in Asia, but only a few studies have examined the perspectives of people with mental illness and their families, and even fewer have explored positive effects of inclusion [27][28][29][30].…”

Using a modified version of photovoice in a European cross‐national study on homelessness

“…This method integrates photography and critical discussion to examine topics from the perspective of the participants who are considered experts in the environments in which they live (Wang, 2003). Few studies have used photovoice in cross‐national studies (Fernandes et al, 2018; Malherbe et al, 2017). Nevertheless, photovoice has been used to investigate the role of culture, cultural differences between countries, and the method's adaptability to different settings (Castleden & Garvin, 2008; Teti & van Wyk, 2020).…”