By Nancy Kharkongor
Caregiver burden is a critical social issue that often remains overlooked. While much attention is given to individuals with disabilities, the challenges faced by their caregivers – typically family members or friends – require greater recognition and support. These caregivers provide essential assistance but encounter significant emotional, physical, and financial difficulties in doing so.
Reality of care-giving in India
In India, approximately 10% of the population, or around 138 million individuals, serve as family care-givers. Due to limited healthcare coverage, family members and non-professionals play a crucial role in caregiving, making it essential to focus on their experiences. Many of these caregivers report high levels of stress and isolation, often sacrificing their own jobs and financial stability.
Care-giving can be a tough and stressful experience but can also bring a sense of fulfilment. It’s essential to reduce the stress associated with caregiving and enhance the positive aspects to improve healthcare, especially for mental health and chronic illnesses. This involves understanding caregiving in different communities and developing programs that make it a rewarding experience. Studies have shown that around 90% of people with chronic diseases are cared for by family members who live with them, with caregivers of individuals with spinal cord injuries spending an average of 11.3 hours a day providing care while managing household chores and caring for other dependent family members
Challenges and burdens encountered in caregiving
Caregivers face a range of challenges, also known as caregiver burden, including physical, mental, psychosocial and financial strains. They frequently deal with managing patient behaviours, addressing social and vocational issues, and coping with their own health problems.
These challenges vary across individuals and cases of disability, impacting the mental and physical health of caregivers. The lack of autonomy and financial burdens continue to impact the caregiver’s adjustment with everyday complexities. Caring for children with disabilities places constant psychological and physical demands on the caregiver, resulting in high levels of stress. Psychological effects of caregiving include symptoms such as depression, anxiety, guilt, anger, insomnia, generalized muscle pain, and headaches. Caregivers in poor physical and psychological states are at a higher risk of providing poor-quality care to their patients.
Need for Support and Intervention
Despite advancements in healthcare, a significant portion of the global population continues to live with disabilities, presenting profound challenges for their caregivers. The UN Convention on the Rights of Persons with Disabilities (UNCRPD) emphasizes non-discrimination and inclusion, but the needs and experiences of caregivers remain unaddressed in policies and research.
To effectively support caregivers, it is crucial to implement targeted interventions that address their unique challenges. Programs designed to reduce stress and enhance the positive aspects of caregiving can considerably improve both caregiver and patient outcomes. Initiatives like group therapy sessions or community support programs can provide much-needed relief and a sense of connection.
Local problems and Intervention
According to the Indian Census 2011, there are 2.68 crore persons with disabilities in India, constituting 2.13 per cent of the total population. The Census also reports that one per cent (44317) of Meghalaya’s population live with varying forms of disability. This alarming number foregrounds the challenges of disability. However, several institutions at the government and non-governmental levels have come up to mitigate the challenges of people with disabilities. A strong public private partnership is a viable solution for furthering the cause. At the private level important stakeholders have emerged to cater to the needs of the disabled. The PMR Centre, Shillong is one example of community resilience in the wake of the challenges imposed by disability. Another focus of the centre is the issue and burden faced by caregivers who remain ignored in most of the policy discourses and research on disability issues. The past few months witnessed a series of case works and group sessions conducted at PMR Centre. Based on case studies conducted with caregivers it has been realized that caregivers continue to live with everyday issues ranging from physical and mental burden to financial and social constraints. Based on this premise PMR Centre has come up with a platform for an exchange of communication and group sessions for caregivers. These initiatives have been found to be an effective intervention in its nascent stage.
The session provided caregivers a platform to exchange their ideas and develop a sense of solidarity as they share their burden. It remains an important objective of the PMR Centre to continue this work for the mitigation or alleviation of caregiver’s burden by seeking partnership with different stakeholders.
Financial Burden of Caregivers
Caregivers often face challenges in affording the medicines and treatments that are necessary for the well-being of their loved ones. Some may also need to quit their jobs or reduce their working hours which also poses a threat to reducing their income, they may also need to quit their education in order to contribute financially to their households and support the medical expenses of their loved ones.
Mental, Physical, and Psychosocial well-being of caregivers
Caregivers of individuals with chronic physical disabilities, time and again feel stressed and may suffer from mental, psychosocial and physical health issues due to the lifelong responsibility of caregiving. This added duty can limit their social activities, leading to feelings of isolation. Over time, caregivers may experience emotional issues such as anxiety, depression, and stress from their caregiving role, which can negatively affect their overall quality of life.
The time and energy that caregiving demands, to manage caregiving and at the same time their other responsibilities, “Juggling between work or being a mother or the unpredictable future” having to sacrifice their time, to give up on their studies, interests, eat, sleep, social interactions and their time. Impacting their careers, and opportunities, putting their goals on hold, for caregiving. They neglect their “me time,” well-being and overall health.
Conclusion
The act of caregiving could be a very rewarding experience for caregivers and could also be an experience that results in unwanted consequences for the caregiver. Understanding and addressing caregiver burden is not just about supporting those who care for individuals with disabilities; it is about recognizing their integral role in the healthcare environment. By concentrating on their needs through comprehensive policies and community support initiatives, we can create a more compassionate society that values both caregivers and those they care for. Recognizing and valuing their contributions can improve the health outcomes of both caregivers and their patients. Focusing on the challenges that these caregivers face is essential, there is a need for policies and programs that support caregivers, to ease their financial, mental, physical and psychosocial burdens, enhancing their quality of life.
“Caregiving is a labor of love, but it is also a labor that requires support”.
(The writer is a social worker, PMR Centre)