Exploring the Experiences of Two Key Transitions in Cystic Fibrosis: Diagnosis and Transition to Adult Care

Literature Review: Health transition is the term given to the process that young people with chronic health conditions experience when leaving children’s health services to enter adult health services. The process has been described as a concern in health, often due to how it is conducted. Therefore, a literature review was conducted to establish how young people and their parents have experienced health transition in Cystic Fibrosis (CF). A total of eight research papers were used for the review. The review identified that participants experienced significant changes in their mental health and personal development during the transition. Additionally, the transition is experienced as a loss as young people say goodbye to a healthcare team they know very well. Parents also experience a loss as they become more aware of their children growing up and adopt a somewhat different parenting approach. Finally, participants were able to identify what helped the transition process, as the relationships they held with their family and healthcare systems at the time of transition were able to be helpful, providing a positive transition experience. Recommendations were made for how healthcare services could address the findings. Empirical Report: There is guidance that suggests families should be offered support when their new-born baby is diagnosed with cystic fibrosis (CF). However, no research has attempted to capture parents’ experiences receiving the news and its implications for their family and contact with those around them. The study tried to address the lack of understanding in this area. Eight mothers who had received a diagnosis for their new-born baby within the six weeks following birth completed an interview with the lead researcher to describe their experiences. Interviews were analysed, which generated four findings. Participants described receiving the news as a cause of great distress and explained that the process, made them feel powerless. Participants felt parenthood was changed forever as their identity and expectations changed. Participants felt guilt they had caused the chronic condition in their children. Additionally, participants felt that the social world did not understand the implications of the CF for them. Finally, participants valued stories of hope, how helpful families are at the time of diagnosis and what they valued in communication with health professionals.