The role of caregivers is disability varies and depends on the impairment and condition of the individual with a disability. Research shows that the role of caregiving in disability is increasing due to several factors related to old age, disease prevalence, disasters, and accidents.
Generally, caregivers provide physical assistance, emotional support and assistance with daily living activities such as personal care, household chores and medical needs however, most of the challenges that they face adversely affect their care-giving role.
Caregivers play a pivotal role in advocacy as they interact with health and other service systems to facilitate access and ensure that the rights of the person with a disability are respected.
Article 19 of the Convention on the Rights of Persons with Disabilities (CRPD) emphasises the importance of living independently and being included in the community. Persons with disabilities should have the opportunity to choose their place of residence and with whom they want to live with.
This entails having access to in-home and community support services, personal assistance and facilities that are responsive to their needs.
The National Disability Policy further highlights that persons with disabilities should not be forced to live in living arrangements that they are not comfortable with or institutions.
Families that live with persons with disabilities should not persecute, stigmatise, or discriminate against their family member with a disability. It is important for the caregiver to provide better support to an individual with a disability so that the negative perception on disability in society is transformed.
While the focus may appear to be on the individual with a disability, ignoring the challenges experienced by caregivers entails that the individual with a disability is neglected too. It is therefore imperative to understand the limitations and strengths of caregivers to better serve the needs of persons with disabilities.
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Caregivers challenges
Some of the challenges experienced by caregivers include providing care that involves lifting and assisting with mobility with very little support. Without an appropriate assistive device, the tasks may lead to fatigue and strain. Caregivers find it difficult to delegate the responsibilities to someone else because they fear abuse and, in most cases, there is no one to take responsibility.
Witnessing the struggles and limitations of the person with a disability can be emotionally draining and more often caregivers experience feelings of sadness, guilt, frustration, and burnout. Caring for a person with a disability is expensive, due to costs associated with medical care, assistive technology, and adaptions to the home.
Adaptions to the home are necessary to enable an accessible environment. While home based care services can be considered as an option, the costs are beyond the reach of many families. Caregivers may face financial strain as they decide on how to balance their job with providing full time care. The opportunity cost of taking care of a family member with a disability is the forgone income, personal interests, and hobbies.
Because of the financial strain and burden mothers of children with disabilities have resorted to leaving their child with the grandmother or siblings and look for work. In several cases, women who have children with disabilities have been abandoned by their husbands and left to fend on their own.
Caregiving responsibilities can limit social interactions and leisure activities leading to feelings of isolation, loneliness, and depression for the caregiver. Access to health services remains a major challenge for most people with disabilities due to several complexities and affordability, and usually it is the caregiver who must navigate the health care system with limited or no support.
Caregivers often juggle multiple responsibilities including caregiving, work, household chores and other obligations which is overwhelming and stressful. Often, we think about women as caregivers and yet several men have taken up the caregiving role.
An example, is a father who must take care of the wife who is a cancer patient, take the child with a disability to school and look for work so that the family can survive, at the same time managing household chores. Through facing such experiences, caregivers are concerned about their well being and the future of their loved ones if they can longer live an independent life.
While the burden of caregivers increases with time, neglect and inadequate care may become a common factor leading to the deterioration of the individual with a disability and poor quality of life. Therefore, interventions must be planned and implemented to alleviate the burden and improve the ability of caregivers to cope.
Recommendations
Addressing the challenges experienced by caregivers in disability, requires support and collaboration from several stakeholders that include government, health professionals, social workers, community organisations, respite care and emotional support for caregivers. It is essential for the caregivers to take breaks and prioritise self-care.
Hence connecting with support groups and local organisations will offer resources and opportunities with other caregivers experiencing the same challenges. An example is a group of mothers in a community who take turns to support their children in an education setting. It is important for the caregiver to learn more about disability to understand the needs and abilities for better support.
Caregivers should explore available resources and support services within their community which can aide financial support, provide counselling services and respite programs. Stakeholders should ensure that caregivers have access to resources and information about services, educational materials, and financial assistance programs specific to disability.
Research shows that the total burden of care is mainly associated with education and family income hence, the training programs and educational workshops are necessary to provide effective caregiving techniques, stress management and communication strategies.
The establishment of support groups or online forums will enable connection with peers, provide emotional support and facilitate the sharing of experiences. In addition, understanding the challenges faced by caregivers including the diverse cultural backgrounds will assist in providing culturally sensitive support services. Health and other services required by individuals with disabilities are provided during the day and will conflict with the working hours.
Therefore, advocating for work policies that support flexibility for caregivers such as flexible working hours will enable a number of caregivers who have given up on their jobs to take care of their loved ones an opportunity to manage their financial responsibilities including caregiving costs.
Respite care services are limited and expensive, however the expansion and affordability of such services tailormade to the needs of individuals with disabilities will provide temporary relief to caregivers.
Caregivers experience financial constraints which is a barrier for accessing most services and addressing caregiving related costs therefore, providing financial support programs, subsidies and tax credits will alleviate the financial burden on caregivers. The voices of caregivers are key in establishing relevant and responsive social work interventions and their participation in the design and implementation of programs is essential in ensuring that they are not left behind.
- Tigere is a development practitioner. These weekly New Horizon articles, published in the Zimbabwe Independent, are coordinated by Lovemore Kadenge, an independent consultant, managing consultant of Zawale Consultants (Pvt) Ltd, past president of the Zimbabwe Economics Society and past president of the Chartered Governance & Accountancy Institute in Zimbabwe (CGI Zimbabwe). — kadenge.zes@gmail.com or mobile: +263 772 382 852.
