‘I’d rather die in the middle of a street’: Perceptions and expectations of aged care among Forgotten Australians

Abstract

Objectives: To explore perceptions and expectations regarding aged care among older Forgotten Australians, informing better ways of delivering safe and inclusive care for this group. Methods: In-depth interviews were undertaken with sixteen Forgotten Australians to understand their perspectives, hopes and perceived barriers to receiving appropriate aged care. Qualitative data were analysed using Ritchie and Spencer's framework approach. Results: Participants were highly averse to receiving aged care in residential settings, particularly where delivered by religious organisations. Limited perceived opportunities to develop trust and maintain control and independence while managing re-traumatising situations shaped Forgotten Australians negative perceptions of the aged care system. Participants also spoke of how their lifelong marginalisation could limit their access to choice and quality in aged care. Conclusion:The aged care industry could provide safe and inclusive care by adopting a person-centred and trauma-informed model that recognises and addresses the specific needs and challenges of Forgotten Australians.

Perspectives of professionals on the safety and accessibility of aged care for Care Leavers and Forgotten Australians

“…1,8 Forgotten Australians are now transitioning to older age and increasingly require some form of aged care support. 10 They are also known to have more rapidly declining physical health, with greater co-morbidity and possibly an increased risk of dementia compared to the general population. 9,11,12 As such, Forgotten Australians reach older age in poorer health and with fewer social supports than the general community.…”

“…Our research has demonstrated a range of concerns about accessing aged care services among Forgotten Australians, including a profound aversion to being 're-institutionalised' in residential aged care and reliving childhood trauma. 10 Specific vulnerabilities from childhood experiences may be re-triggered by a lack of control over institutional practices including group activities, prescribed meals and mealtimes, medications, and closed windows and doors. 1,5,10,13 While participants reported a preference for ageing in place, they noted that home care still introduces a power imbalance requiring levels of trust difficult to generate for trauma survivors.…”

“…10 Specific vulnerabilities from childhood experiences may be re-triggered by a lack of control over institutional practices including group activities, prescribed meals and mealtimes, medications, and closed windows and doors. 1,5,10,13 While participants reported a preference for ageing in place, they noted that home care still introduces a power imbalance requiring levels of trust difficult to generate for trauma survivors. 10,12 Disclosure of personal traumatic childhood experiences to strangers (service providers) can be re-traumatising, and difficulties with digital literacy and accessing online supports were major barriers to accessing services.…”

“…1,5,10,13 While participants reported a preference for ageing in place, they noted that home care still introduces a power imbalance requiring levels of trust difficult to generate for trauma survivors. 10,12 Disclosure of personal traumatic childhood experiences to strangers (service providers) can be re-traumatising, and difficulties with digital literacy and accessing online supports were major barriers to accessing services. 10 Despite the specialised needs of older Forgotten Australians, little is known about how prepared the aged care system is to provide accessible, high-quality and safe aged care support for this group.…”

“…10,12 Disclosure of personal traumatic childhood experiences to strangers (service providers) can be re-traumatising, and difficulties with digital literacy and accessing online supports were major barriers to accessing services. 10 Despite the specialised needs of older Forgotten Australians, little is known about how prepared the aged care system is to provide accessible, high-quality and safe aged care support for this group. Systemic changes in the last 40 years could theoretically benefit the Forgotten Australians.…”