A new Caring Futures Institute research project is investigating the experiences of frail, immobile people to understand disparities in health care and wellbeing for this ‘invisible’ group in society, many of whom are bedridden.
The project was inspired by the report Just Invisible: Medical Access Issues for Homebound/Bedridden Persons by disability advocate Ricky Buchanan, who suffers from a variety of conditions that restrict her to bed every day.
The study is documenting potential healthcare disparities, social exclusion and marginalisation among this group of people while investigating experiences including:
- inability to recover from minor injuries or illnesses
- social isolation
- mental health decline
- episodic conditions that feed a health deterioration cycle
- diminished capacity to participate in community and family life
Led by Dr Maria Alejandra Pinero de Plaza, the project involves a multidisciplinary team of investigators including Professor Alison Kitson, Dr Michael Lawless, Dr Mandy Archibald, Ms Penelope McMillan and Ms Alexandra Mudd.
Ms Penelope McMillan, who is a director of ME/CFS Australia and chair of the South Australian branch, is involved in the study as a consumer co-researcher. The organisation focuses on advocacy and support for people with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, and is sharing the study among its members.
An online survey is open to capture people’s views and experiences, with the opportunity to provide a photograph of something that represents their lived experience alongside a written description. This will feed into an anonymous exhibition of posters to be displayed online and within museums and community sites in a socio-scientific exhibition to share what it means to be frail, homebound or bedridden in Australia.