What is it about?

Over 60 million people worldwide suffer from serious mental illnesses (SMI), such as schizophrenia and bipolar disorder, of which over 14 million cases are found in India. Due to poor medical resources and financial constraints, these disorders are becoming more prevalent in the country, creating a treatment gap of roughly 70%. Given the lack of support from healthcare systems, government as well as society in low-and middle-income countries like India, the family members, which are also referred to as caregivers, are the sole support system for the people with SMI and ultimately cater to all their needs, which are usually taken care of by the government in developed nations. This negatively affects both the mental and physical well-being of caregivers. We extend the needs and challenges of caregivers for people with SMI with added insights into the current understanding of mental health in the Global South. We explore how caregivers in under-resourced settings can be better supported through everyday digital technologies by interviewing caregivers from urban and rural Indian settings and conducting workshops with professionals from NGOs in India. We also highlighted the issues encountered by practitioners in their current support services for caregivers, which aided in determining the key design elements of the possible digital design space. We found that technology has the potential to provide carer-centred support by utilising carers lived experiences and connecting them to a peer support network. Furthermore, digital peer space can empower carers who experience stigma and issues with existing support networks, provide personalised support for carers to overcome barriers and progress in the recovery of people with SMI and bridge service gaps in mental health care provision in the Global South.

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Why is it important?

While SMIs have far-reaching repercussions for diagnosed individuals, they also substantially impact families and caregivers. Over 90% of people rely on their families for care because healthcare services are underfunded and unequally distributed in India, with rural areas suffering more than urban areas. Caregivers encounter work overload, sleeplessness, financial hardship, diminished leisure, exhaustion, and social isolation, which decreases their quality of life. Families often discontinue patients’ treatment as they fail to handle the pressure. In this research, we found that caregivers regard solutions through lived experiences by other caregivers as extremely important in order to receive sympathetic understanding and hope, as it lets them realise that they are not alone. This study is the first to explore how digital tools can assist caregivers of people with SMI and mitigate caregiving burdens in the context of developing nations. This study also considered rural dwellers, who are frequently underrepresented and addressed their accessibility needs.

Perspectives

Writing this article was a great pleasure as it has co-authors with whom I have had long-standing collaborations. While conducting my research, I engaged with the partnered NGOs and volunteered in activities involving caregivers, which enhanced my empathy. I learned more about the issues that carers face through interviews with them. I realised that carers bear immense responsibility as patients frequently need 24-hour care from their families. The families or caregivers’ role is all-pervasive, from selecting whether or not to seek treatment to providing for the patient’s basic, emotional, and monetary requirements. Thus, family involvement in patients’ care is essential, and I firmly believe that caregivers should be informed about SMIs and how to manage them. This would lessen their stress and improve overall outcomes for people with SMI.

Miss Farheen Siddiqui
Monash University

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This page is a summary of: Exploring the digital support needs of caregivers of people with serious mental illness, April 2023, ACM (Association for Computing Machinery),
DOI: 10.1145/3544548.3580674.
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