Adolescents’ Experiences of Isolation in Cystic Fibrosis

Abstract

Cystic fibrosis (CF) infectious isolation guidelines and clinical recommendations exist in standards of CF care to reduce the risk of cross-infection between individuals with CF. Chronic infection is associated with deterioration in lung function and increased rates of morbidity and mortality, thus preventing and reducing cross-infection is a concern for individuals with CF. Understanding the bio-psychosocial implications of isolation is vital to developing and providing holistic approaches to CF care. This study aimed to make sense of how adolescents with CF understand and experience infectious isolation during their care. Qualitative, semistructured interviews were conducted with 9 adolescents, aged 12 to 19 years old, with a diagnosis of CF who had experienced isolation. Interviews were analyzed using inductive thematic analysis. Participants experienced difficulty adjusting to living with isolation and attempted to integrate their isolation experiences. Isolation highlighted a sense of threat posed by cross-infection, a threat which participants experienced as originating from others and from themselves to others. Participants described striving to protect themselves and others from this threat. Isolation also appeared to exacerbate differences participants noticed between themselves and others without CF. For adolescents with CF, isolation is not a neutral experience. Adolescents reported difficulty understanding isolation and challenges associated with this experience across settings. Given these difficulties, multidisciplinary teams should increase awareness, understanding and discussion about the psychosocial impact of isolation among those with CF, their families and wider systems, to promote optimal bio-psychosocial outcomes. Future research could explore experiences of isolation from children, family and staff perspectives.

Implications for Impact Statement

This study suggests that there are psychological and social complexities associated with medical isolation experienced by adolescents with cystic fibrosis as part of their routine care. It highlights experiences of isolation from the perspectives of adolescents’ themselves and suggests the importance of considering the possible psychological and social impact of isolation as part of a multidisciplinary approach to practice.