Abstract
Cystic Fibrosis (CF) patients are living further into adulthood than they ever have previously, due to better programmes and interventions that mitigate the biological burden of the disease. This has effectively pushed the mortality associated with the condition from the paediatric age group into the adult health care setting, resulting in various challenges for patients and their families. Patients transitioning between these quite different services need to be effectively managed and cared for to provide a positive experience for them and to improve their health outcomes.
In order to provide a basis for this to be achieved, the aim of this systematic review was to explore the lived experiences of Cystic Fibrosis patients and their parents, from published work in the field, in order to formulate and provide a framework for the New Zealand setting where CF patients are increasingly transitioning from paediatric to adult health care services. Literature sources included Google scholar, PubMed, PsychInfo and PROQUEST (Health and Medicine, and Nursing and Allied Health) Keywords included "Transition to adult care in cystic fibrosis", "Transition to adult care in cystic fibrosis patient perspectives" and "Transition to adult care in cystic fibrosis qualitative". The Joanna Briggs Institute qualitative study appraisal checklist was applied to assess quality of the studies. Studies that scored over 90% were included. Out of thirty-one articles appraised, twenty-two were excluded. Data extraction used the JBI-QARI tool, while thematic analysis was used to display similar findings between identified studies.
Results from the literature identified four main themes about the transition process were consistently identified as "independence and responsibility", "continuity of care", "quality of relationships" and "education and training". Patients generally found that transitioning into adult services required more independence and a greater responsibility for their own health care. Negative transition experiences included a lack of continuity of care between services and a breakdown in patient relationships with their paediatric teams. An important finding from the analysis was that patients felt health care professionals, particularly in the adult services, needed more education and training on CF to provide them optimal care.
The findings of this study highlight issues of the current transition process for CF patients into adult care, specifically the lack of continuity of care between the services, the fractured Transition to Adult Services for CF Patients relationships with their paediatric team and the lack of well-educated staff members in adult services. These CF-specific findings concur with literature involving patients with other chronic conditions where patients often have problematic transition experiences due to similar issues resulting in patients and their families feeling unsupported under adult care. Further research into individualised transition programmes in the New Zealand setting should be carried out to provide rationale for health care professionals to use when caring for CF patients.