Abstract:
Abstract
Background: Ireland has the highest rate of Cystic Fibrosis (CF) in Europe and in
the world. However, there is a strong evidence to suggest that the Irish transition
service for adolescents with CF from a child to adult setting warrants further service
improvement, particularly in terms of clinically relevant guidelines that can shape
care planning and service delivery.
Objectives: To develop relevant and feasible guidelines for the transition care of CF
children in Ireland. The proposed guidelines are intended to emanate from an initial
evaluation of the transition service, an investigation into the subjective experience of
transition of CF patients and their personal needs, and finally an interrogation of
relevant health professional practice in relation to transitional care.
Methodology: A sequential exploratory mixed method design guided this study. The
first qualitative phase employed in-depth interviews to explore CF adolescents and
young adult experiences about the current transition service, followed by focus group
interviews with healthcare professionals to discuss the reported CF patients needs
and suggest interventions that address them. Finally, a survey questionnaire
formulated on the data gathered during the first qualitative phase and tested for its
validity was used in the second quantitative phase, the goals of which were to
explore the opinions of a larger sample of CF service stakeholders about the
relevancy and feasibility of the suggested guidelines for clinical practice.
Results: The in-depth interviews revealed 4 main themes, the amorphous service,
sharing knowledge, the need to be involved in care, and easing the transition process.
While the focus group interview revealed the need to follow a systematic approach
of care (assessment, planning, implementation, and evaluation), to include a
developmentally appropriate approach, providing transitional care in an environment
appropriate to the unique stage of development , and train healthcare professionals in
issues related to adolescence and transition process. Participants in the survey
questionnaire agreed on 37 proposed guidelines out of a possible 54 as either highly
important or important and highly feasible or feasible. These guidelines reflect the
needs reported by CF patients and the healthcare professionals as suggested elements
of care essential to a safe and secure clinical transition that meets the diverse needs
of those living with a chronic and life limiting illness.
