Developing guidelines for best practices that address the transition of adolescents with Cystic Fibrosis from a paediatric to an adult healthcare setting in Ireland
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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.
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