The Palliative Care Association of Uganda has made a mark in its efforts to enhance the inclusion of Persons Living with Disabilities (PWDs) through accessing pain relief and palliative care services in Uganda.
At a webinar that was organized by PCAU and Light for The World in July 2022, the PCAU Country Director, Mark Donald Mwesiga recapitulated the steps PCAU has taken to support Persons Living with Disabilities in accessing palliative care and pain relief services.
“We recently signed up with a disability-focused organization, Light for the World to be disability-inclusive in our work. This inclusion takes account of all PCAU focus areas. We are therefore taking steps to be inclusive. One of the initial activities that we have decided to start with is to hold a webinar on Access to Palliative Care and Pain Relief for Persons living with Disabilities in Uganda from which recommendations can be made for different players to act.” Said Mwesiga.
The webinar was attended by over eighty people from human rights organizations, disability-focused organizations, palliative care providers, PCAU members, and well-wishers.
Persons with disabilities are those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. In Uganda, 12.4% of the population has a disability. In the rural areas that can be high at 19% and over 1 billion people (15%) of the world population are affected, with the majority usually among the developing countries. Everyone is likely to experience it at some point in life.
Dr. Dorothy Olet Adong, the Academic Program Coordinator at Hospice Africa Uganda (HAU) said that disability presents unique and complex Palliative Care needs and challenges to Palliative Care providers ranging from physical conditions requiring palliative care to physical, intellectual, and sensory impairments.
“Palliative care and pain management are increasingly being recognized as basic human right. But presently, not very many disabled people, especially intellectual disabilities receive high quality palliative care. Health care professionals working with disabled people usually do not have appropriate knowledge and skills to support them. They are rarely asked their opinions. Many countries lack policies on people with disabilities” Said Adong.
Eric Wakoko, the Disability Inclusion Advisor at Light for The World Uganda reiterated a summary of some of the barriers that continue to hinder PWDs’ access to palliative health care services by acronym “A CAP”; Attitudes – People thinking negatively about the abilities of persons with disabilities. Communication – Persons with disabilities not being able to access or share information, ideas and feelings. Accessibility – Lack of ability to move around freely and with confidence. Policies / Participation – Policies, processes or practices that limit persons with disabilities to access services or participate in activities on equal basis with others.
For effective provision of palliative care and other services to persons living with disabilities, Wakoko advises health practitioners to ask persons with disabilities directly what their accessibility preferences are, speak directly to the person not to their sign interpreter or personal assistant, ask questions when unsure of what to do, wait for persons with disabilities to ask for assistance, verbally greet and identify yourself before extending your hand to greet a person who is blind or low visioned, and many other practical ways to engage effectively.
According to the 2019 report by the Australian Government Department of Health on barriers to palliative care, the most common communication concern reported in the literature and by stakeholders was that service providers and families often underestimate the capacity of people with disability. This usually arises from cognitive, motor and/or sensory impairments and this can be detrimental to the experience of palliative care, foreclosing the possibility of person-centered care and even denying agency to people with disability.