Importance of early experiences of needle procedures on the lives of people living with cystic fibrosis.

Abstract

Aims: Optimal treatment of cystic fibrosis (CF) requires regular needle procedures, including blood tests, intravenous antibiotics, and vaccination. Frequent needle procedures place children with CF at increased risk of development of a fear of needles. Research in other chronic childhood diseases has demonstrated the importance of recognition of fear of needles in the patient experience, but evidence in CF is lacking. This research aimed to explore the antecedent factors and mediating influences on the development of needle fear/phobia in childhood, from the perspective of older adolescents and adults with CF. Method(s): Mixed methods study. All individuals >=16 years in our specialist CF centre invited to participate. Participants completed an online questionnaire to ascertain those who self-identify as having a fear of needles, followed by a standardised measure for specific phobia to quantify the level of their needle fear/phobia. Additional questions assessed the impact of those fears. Those who identified as having a fear of needles or had scores in the standardised questionnaire suggesting features of such were invited to take part in a semi-structured interview to further understand their experiences, with responses analysed using inductive thematic analysis. Finding(s): 34 individuals out of a total cohort of 168 (20%) completed the online survey. The median age of participants was 28.5 years (range 16-57). 16 (47%) participants self-identified as having a fear of needles. An additional 10 (29.4%) participants reported a history of fear of needles and/or scored high enough on the questionnaire to suggest features of at least a mild needle phobia. Combined, this suggests that a minimum of 1 in 6 of the total cohort are significantly impacted by needle procedures. Results from the inductive thematic analysis demonstrated that the experience of needle procedures in childhood strongly influenced the development of needle phobia and has long-term impacts on people with CF. Highlighted themes included lack of control and autonomy, avoidance of treatment, long-term health impacts, and impacts stretching beyond the healthcare setting. Participant recommendations focused on the importance of procedural competency, relationships with healthcare providers, and individualised healthcare to mediate the impacts of needle procedures. Summary: Early experiences of needle procedures can significantly shape the healthcare and lives of people living with CF. Creating positive early experiences of needle procedures for children with CF may help mitigate the risk of developing long term needle fear/phobia. Input from individuals with CF who have lived experience is required to help achieve this.