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.