Today, people with intellectual disability (ID) are living longer than ever before, frequently experiencing conditions associated aging and chronic disease at an early age due to their genetic makeup. People with ID living in specialist disability homes (SDH) are reliant on disability care workers (DCW) to provide care and advocacy during episodes of illness. However, during episodes of acute illness, people with ID are at high risk of receiving poor quality healthcare or care not suited to their specific needs. People with ID are high users of hospital emergency department and inpatient services for health problems that may be prevented or treated within the community. Monash Health residential in-reach services, in Victoria, Australia provides a novel service to deliver acute transient care for people with ID within their SDH during episodes of acute illness. Caregiver’ experiences of providing this service has not been investigated.
The purpose of this research was to inform strategies to support in-reach services to meet healthcare needs, during episodes of inter-current illness, for people with ID living in GH. The primary aim was to explore and describe the perspectives, experiences and practices of DCW and in-reach service Registered Nurses (RN) when providing healthcare during inter-current illness for people with ID living in SDH.
Methods:
A qualitative exploratory case study research design was used. Participants included a convenience sample of three DCW and four in-reach service RNs with experience of providing healthcare during episodes of acute inter-current illness for people with ID living in SDH. Data were collected via in-depth interviews using three case-study vignettes as a tool to explore and describe the experiences of participants.
Results:
The findings of this study demonstrate that in-reach services can support clients and DCW by providing prompt access to clinical expertise in the assessment and treatment of inter-current illness within the SDH setting. This may in turn improve client outcomes and decrease transfers to emergency departments and hospital care. However, the scope of DCW practice and the SDH care setting place limitations on the type of acute care services that can and should be provided to clients with ID within this setting. Additionally, this study found that there was scope to increase access, and improve coordination of primary and community care services to support DCW and clients in the management of complex healthcare needs. Effective coordination of medical and supportive care services has the potential to allow clients to continue to live in their choice of community residence for a longer period of time.
Conclusion:
This research supports a conceptual understanding of the role of a DCW in SDH setting and their role in the management of episodes of acute inter-current illness in SDH has been developed. The outcomes of this study demonstrate that in-reach services can play an important role in supporting clients and DCW in SDH setting. A gap was identified in the effective coordination of primary care and acute care services for individuals with ID. Importantly, the emphasis needs to remain on the delivery of person-centered care, to ensure that the best health care outcomes for people with ID can be achieved, while ensuring that their preferences and choices for type and location of care delivery are respected.
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