| Learning Objective #1: Recognize a range of issues arising from specialist care of people with chronic illness | |||
| Learning Objective #2: Reflect on alternative approaches to care which minimize marginalisation of patients and their families |
Objective The complexity of care associated with many chronic illnesses has seen a continued growth in specialist medical and nursing care. Such specialisation is argued as vital for achieving improved outcomes for those with long-term health problems. Exploring patient and family perceptions of care reveals the place specialisation plays in their disease management.
Design Analysis of the findings from three different interpretive studies suggests that an unintended consequence of specialisation has been the marginalisation of both people with chronic illness, and their families.
Sample In study one, people with end stage renal disease and their family were asked about the impact of home dialysis on their lives and the roles nurses played in supporting them. Study two investigated the experience of people with spinal cord injury, and their families, who received care for pressure ulcers. The third study explored the perceived health care needs of people with type 1 diabetes.
Methods Each of the studies was conducted in the same state of Australia, and used in-depth interviews to collect data, which were subsequently analysed thematically.
Findings Specialisation, for participants in each of these studies, resulted in poor local management, and services to meet their special needs. Additionally, specialist care was limited to a narrow focus and participants experienced a gap in the management of their overall health care needs.
Conclusions Identification of the unintended marginalisation of people with chronic illnesses suggests a need to develop different approaches to practice that emphasise a focus on inclusive care beyond the current specialist ‘silos’ of knowledge.
Back to Experiencing a Chronic Illness
Back to 37th Biennial Convention - Scientific Session
Sigma Theta Tau International