Homebound and bedridden Australians tell their stories

A wellbeing initiative for homebound and bedridden Australians has led to the development of an online arts and storytelling exhibition to advocate for improved access to public health services.

More than 600,000 Australians prevented from leaving home by their disability can now access the program to reveal their personal journey and challenges navigating the healthcare system.

"Approximately 50% of these Australians are aged 5–64 years, and the other half are 65 years or older, so a wide socio-demographic spectrum," said Dr Pinero de Plaza, a researcher from the Caring Futures Institute at Flinders University who worked with a network of frail, homebound and bedridden people (FHBP) and clinicians on the project.

The FHBP are using innovative wellbeing initiatives to tell their personal stories of struggle, aiming to build support networks and primary care access. Many of these Australians live with health issues — including frailty, disabilities, mental health, permanent injuries and autoimmune, chronic and rare conditions. They are left feeling trapped and alone without appropriate access to disability, telehealth and financial support.

The exhibition has combined science with technology to develop 23 photographs, posters and videos under expert guidance to shine a light on traumatic personal experiences and advocate for improved access to public health services.

"More than 37,000 Australians have reported not leaving home at all because of their disability or a health condition, so we’re looking at a significant proportion of the population," Pinero de Plaza said.

"Our online exhibition expresses their personal struggles through imagery and messages created directly with homebound people to provide knowledge and understanding about these traumatic experiences and highlights the solutions that scientists and clinicians can develop by working with these groups."

This exhibition was submitted recently to the Disability Royal Commission by Pinero de Plaza. The commission acknowledged how this output of the FHBP research program will help develop a better understanding of the systemic failings affecting those confined to their homes:

"We look forward to our research and the stories in the exhibition helping inform future government and agency policies to address gaps in the system to improve services for homebound and bedridden Australians, for example, providing GP consultation via telehealth for these groups (#FHBP) and supporting science implementation programs for them."

Pinero de Plaza outlines how arts-oriented health research and technology can combine to improve care for frail, homebound and bedridden people.

"It's important to ask what lessons about continuity of care and integration should be acknowledged and accommodated in performing arts interventions like the concept we've developed to best support people with a network of frail, homebound and bedridden people (FHBP), clinicians and experts moving forward."

Enlighten: Homebound people ageing with technology: A socio-scientific and artistic exhibition submitted to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability is published here.

Top image credit: iStock.com/PIKSEL