Adolescents’ experiences of isolation in cystic fibrosis.

Abstract

BackgroundCystic 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. MethodQualitative, semi-structured interviews were conducted with nine adolescents, aged 12-19 years-old, with a diagnosis of CF who had experienced isolation. Interviews were analyzed using inductive thematic analysis. ADOLESCENTS' EXPERIENCES OF ISOLATION IN CYSTIC FIBROSIS 2 ResultsParticipants experienced difficulty adjusting to living with isolation and attempted to integrate their isolation experiences. Isolation highlighted a sense of threat posed by crossinfection, 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. ConclusionFor 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, multi-disciplinary teams should increase awareness, understanding and discussion about the psychosocial impact of isolation amongst 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.

Thriving alongside cystic fibrosis: Developing a grounded theory of empowerment in children and young people with cystic fibrosis during key life transitions

“…Given the prominence of patient peer support in previous models of patient empowerment, it is particularly important to highlight the impact of infection control guidelines limiting physical contact between patients with CF. These guidelines are still relatively recent, and whilst other research on the impact of isolation is beginning to emerge (Vines et al, 2018), the current study adds an additional perspective. In addition, to the authors' knowledge, the impacts of developmental stages and changes, the progressive nature of CF and the particularly rapid nature of current advances in CF care have not been accounted for in previous models of patient empowerment.…”

“…Other differences were specific to CF. For example, the impact of infection control guidelines and the limited opportunities for CYP to connect with others with CF (Vines et al, 2018) meant that the role of peer support was more complex than is often reflected in models of empowerment based on other patient groups.…”

The global reach of pediatric psychology: How far have we gotten?

“…As momentum builds and the number of pediatric psychology professionals grows in a particular country, the need to develop and establish a structured network arises. Young and colleagues present an overview of how a professional network of psychologists working in pediatrics developed in the United Kingdom approximately two decades ago (Young et al, 2018). The Paediatric Psychology Network United Kingdom (PPN-UK) was borne out of a strategic aim to promote the development of pediatric psychology practice and skills within the U.K.…”

“…Moving from Africa to the U.K., Vines and colleagues provide a qualitative account of adolescents with cystic fibrosis who have experienced isolation in an effort to reduce cross-infection (Vines, Fisher, Conniff, & Young, 2018). These patient accounts illuminate the psychological and social complexities associated with medical isolation that arise within the less obvious context of routine care.…”

The voice of adolescents

“…One study used the draw-and-write technique to interpret the viewpoint of school-age children after hospitalization 9. Two studies included the child's perspective following the Severe Acute Respiratory Syndrome (SARS) outbreak in Canada, while one U.K. study looked into the experiences of adolescents with cystic fibrosis (CF) following hospitalization 10,11. In the previous pediatric studies, patients associated isolation with feelings of loneliness, confinement, restriction, sadness, boredom, fear, worry, anxiety, and stigma.…”