The lived experience of younger people with a disability living in residential aged care facilities: a phenomenological study

The topic of younger people with a disability living in aged care facilities is somewhat hidden and undiscussed in Australia. The term 'younger people' is defined in health and disability policy as people aged between 18 and 65 years of age. For the purpose of this research, 'younger people' include people under the age of 65 years with a disability (Australian Institute of Health and Welfare, 2012). Younger people with a disability requiring high level needs have limited options in relation to the provision of care because there is insufficient funding, negligible facilities and limited community-based structures to assist individuals to remain living in regional or rural communities. Of note, community-based care is minimal and unavailable to over 7000 younger Australians who currently reside in aged care facilities (Commonwealth of Australia, 2015). Therefore, this study involves younger people with a disability who reside in residential aged care facilities because of inadequate support in the community to meet the level of care they require. Constantly emerging technological advances in health care enable people with disabilities to live longer and healthier lives. However, ageing carers can struggle to meet the subsequent care requirements of a person with a disability who is also ageing. Likewise, the carer themselves may be experiencing health and age-related difficulties, resulting in an inability to adequately provide the care and support required for the younger person with a disability. Furthermore, the nature of families in today’s society means it is not always viable for relatives to provide informal care to a younger person with high level care needs. The financial burden placed on people today require adult family members to be engaged in paid employment as opposed to remaining at home to care for an individual. Inadequate resourcing by governments to supplement informal care provision results in disabled younger people having to be placed in residential aged care facilities. Therefore, it is essential to gain an understanding of the experiences of younger people with a disability placed in residential aged care facilities to provide a realistic account surrounding this hidden topic. The research presented in this thesis is an exploration of the experiences of younger people with a disability living in residential aged care facilities. This study aims to gain insight into the psychosocial impacts of placement in a residential aged care facility and identify strategies the younger person with a disability utilises to adjust to their living environment. Interpretive phenomenology was employed as the methodology to explore the essence of the individual’s experience. Focussing on individual experiences and what was important to participants enabled a more thorough understanding of the impact of living in a residential aged care facility as a younger person. Moreover, this study assisted to identify strategies the participants adopted to help them adjust to the aged care environment and findings highlighted aspects that could be improved to better meet the needs of this marginalised group. The key findings of this study indicate that younger people with a disability living in residential aged care facilities experience significant loss. Loss of relationships with family and friends, loss of ndependence, and loss of connection with the broader community were common themes. Participants countering the losses exercised resilience and adopted resilience-enhancing strategies. For instance, meaning making and benefit finding were strategies that assisted the participant to adjust to living in the residential aged care environment, while acknowledging that the quality of their lives maybe enhanced by meeting aspects of their social, emotional and psychological needs.