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

Helen Lea Fernandes; Stephanie Cantrill; Ram Lal Shrestha; Rachel Belda Raj; Becca Allchin; Raj Kamal; Nicole Butcher; Nathan Grills

doi:10.5463/dcid.v29i2.746

Helen Lea Fernandes ⁽¹⁾, Stephanie Cantrill ⁽²⁾, Ram Lal Shrestha ⁽³⁾, Rachel Belda Raj ⁽⁴⁾, Becca Allchin ⁽⁵⁾, Raj Kamal ⁽⁶⁾, Nicole Butcher ⁽⁷⁾, Nathan Grills ⁽⁸⁾

(1) TEAR Australia, 1/4 Solwood Lane, Blackburn, Victoria 3130, Australia,

(2) TEAR Australia, Australia,

(3) Centre for Mental Health and Counselling, Nepal,

(4) Emmanuel Hospital Association, India,

(5) TEAR Australia, Australia,

(6) Emmanuel Hospital Association, India,

(7) Nossal Institute for Global Health, Australia,

(8) Nossal Institute for Global Health, Australia

https://doi.org/10.5463/dcid.v29i2.746

Issue
Vol. 29 No. 2 (2018): Summer 2018

Submitted
September 14, 2020

Published
October 2, 2018

Keywords:

Psychosocial disability, lived experience, inclusion, participation, photovoice, natural supports, family, community advocates

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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.

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Authors

Helen Lea Fernandes

TEAR Australia, 1/4 Solwood Lane, Blackburn, Victoria 3130

helen.fernandes@tear.org.au (Primary Contact)

Stephanie Cantrill

TEAR Australia

Ram Lal Shrestha

Centre for Mental Health and Counselling

Rachel Belda Raj

Emmanuel Hospital Association

Becca Allchin

TEAR Australia

Raj Kamal

Emmanuel Hospital Association

Nicole Butcher

Nossal Institute for Global Health

Nathan Grills

Nossal Institute for Global Health

Author Biographies

Helen Lea Fernandes, TEAR Australia, 1/4 Solwood Lane, Blackburn, Victoria 3130

Helen is an Occupational Therapist and a public health and development specialist with TEAR Australia. Her interests include disability inclusion, lived experience of disability methodology, disability and international development and community inclusion in low and middle income countries.

Stephanie Cantrill, TEAR Australia

Stephanie is an Occupational Therapist with postgraduate qualifications in public health. Her current clinical specialty is in the area of chronic pain, and other interests include international development and holistic wellbeing. Stephanie has been working with TEAR Australia in a voluntary capacity.

Ram Lal Shrestha, Centre for Mental Health and Counselling

Mr. Ram Lal Shrestha is one of the founders and current executive director of the Centre for Mental Health and Counselling-Nepal. His interests include mental health and rehabilitation for people with mental and psychosocial disability.

Rachel Belda Raj, Emmanuel Hospital Association

Ms. Rachel Belda Raj is a Social Worker with a Masters in Medical and Psychiatric Social Work. Her interests are global health and development, disability, mental health and human rights. She works in a CBR Project in Jharkhand, India.

Becca Allchin, TEAR Australia

Becca is an Occupational Therapist and development consultant. Her clinical specialty is in the area of families where a parent has a mental illness and has interests in international development, sustainability and research. Becca provides technical advice to TEAR Australia on a voluntary basis.

Raj Kamal, Emmanuel Hospital Association

Raj is working in the capacity of designing and implementation of the community-based “SHIFA mental health & disability project” in Uttar Pradesh, India. His current interests include integration of mental health with development, community inclusion and strengthening pathways for lived experience of persons with disability in building improved quality of life.

Nicole Butcher, Nossal Institute for Global Health

Nicole is a public health practitioner with project management, policy development, behaviour change communication and research experience in the Asia-Pacific region. Nicole’s current research focus areas are mental health, disability and community health in northern India.

Nathan Grills, Nossal Institute for Global Health

Associate Professor Nathan Grills is a Public Health Physician and NHMRC post-doctoral fellow, working largely on disability, non-communicable diseases and health curriculum development and training in India.

1.

Fernandes HL, Cantrill S, Shrestha RL, Raj RB, Allchin B, Kamal R, Butcher N, Grills N. Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal. DCIDJ [Internet]. 2018 Oct. 2 [cited 2025 Feb. 23];29(2):5-23. Available from: https://dcidj.uog.edu.et/index.php/up-j-dcbrid/article/view/293

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