Disability and Palliative Care; Key Considerations During the COVID-19 Era

Many people with disabilities do not have equal access to health care, education, and employment opportunities in Africa, and often, they also do not have access to or receive relevant disability-related services as they require. Consequently, they tend to experience exclusion from many everyday life activities, whether they are young or old.

Evidence also shows that persons with disabilities (PWDs) experience worse socioeconomic outcomes and poverty than persons without disabilities. And now lately, these long-standing disadvantages to PWDs have been aggravated by the advent of the COVID-19 pandemic. These sentiments were highlighted by Dr. Bubikire Stanley, the Assistant Commissioner of Health Services in charge of the Disability & Rehabilitation Division in Uganda’s Ministry of Health, during a “Disability and Palliative Care Webinar” hosted by the African Palliative Care Association in July 2020.

Disability “an evolving concept”

Dr. Bubikire acknowledged that disability is “an evolving concept”, and gave the definition of disability as any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).

He looked at disability, not as a disease but rather in the context of the environment in which that person lives. The environment can offer many challenges to a person with a disability, which in turn directly affects access to palliative care services. These barriers have been heightened due to the novel coronavirus disease (COVID-19) pandemic. The Ministry of Health’s goal is therefore to provide enabling environments to affected individuals, including rehabilitation where possible.

Barriers for people with disabilities

One barrier is the lack of assistive devices (e.g. hearing aids, walkers, etc.). In addition, while public health information is crucial for combating COVID-19, many people with disabilities cannot access this because the mainstream media is not always accommodating; for instance, few broadcasters include sign language for deaf individuals. Proper hygiene, is not always easy to achieve for people with disabilities – for example, those who are not mobile and those who cannot wash their hands without assistance.  This is therefore even more aggravated by the COVID-19 pandemic.

Another common barrier for people with disabilities has to do with training and education. Caretakers are not always well-trained in infection control and prevention measures, which could result in them getting sick. Lately, fear of the coronavirus has led some caretakers to reduce interaction and care with people with disabilities. This is exacerbated by the lack of personal protective equipment (PPE) which makes it harder for caregivers and healthcare workers alike to attend to such patient needs.

Limited Data

The presenter highlighted how the lack of data on disability is problematic, not only in Uganda but in many other African countries. Absence of data makes it hard for relevant ministries to design specific programs to address the needs of people with disabilities. More effort is required for evidence-based interventions to be developed. In the wake of COVID-19, even more questions need to be asked and outcome measurements determined so that researchers and providers can identify the strengths and weaknesses in their approaches to helping people living with disabilities.

Dr. Bubikire also indicated that his ministry is working with local partners to overcome these limitations that negatively affect Uganda’s disability and rehabilitation services, including civil society organisations and private sector. Some solutions include reforming national policy, advancing research programs, increasing the use and affordability of technology, and expanding human resource skills.

Upskilling

Priscillah Ondoga, a physiotherapist in Jinja, Uganda, also gave some insightful remarks during the webinar, and highlighted why immediate skills development through short service training is essential in building the competence of caretakers who look after people with disabilities – a need that is especially crucial during the COVID-19 pandemic. Training more rehabilitation and palliative care providers to meet the increased demand of patients with disabilities needs to be prioritised. As a practical example, the Palliative Care Association of Uganda is working with the deaf community to ensure palliative care services are available to those with hearing disabilities. She added that short courses over a few days or weeks may even be enough in a crisis. Dr Bubikire concurred with the need to stay engaged with service providers and health workers for skills development.”

To access the recording of the webinar on Disability and palliative Care, and other APCA webinars, please follow this link