Developing agency in the transition to self‐management of cystic fibrosis in young people

Abstract

Introduction Young people living with a chronic illness must be supported by healthcare professionals and parents to manage their care as they move through adolescence and into adulthood. The concept of agency is relevant to this process as it involves reflecting on one's behaviour and its consequences, and considering alternative possibilities, before committing to a course of action. Methods The aim of this study was to explore the role of agency in young people's transition to self‐management of cystic fibrosis. Qualitative semi‐structured interviews were carried out with 13 young people (7 female, 6 male) aged 13‐22 years, recruited from three cystic fibrosis clinics in the Republic of Ireland. Results By self‐monitoring their behaviour and managing their symptoms the young people described a process by which they employed agency and as a result, gained confidence and a sense of control over their illness. Although, parents and health care professionals aided in the development of agency, the young people explained that it was occasionally threatened, particularly in their interactions with health care professionals. This led the young person to react defensively, and negatively affected their relationship with health care professionals. Conclusions For young people to feel supported empowered in the management of their illness, their developing ability to exercise agency must be respected and encouraged through collaborative decision making.

Understanding motivation for Australian adolescents and young adults with cystic fibrosis: Modifiable factors to support self‐management

“…This highlights the importance of comprehensive, holistic, models of self‐management support for young people who are flexible and iteratively assess, identify and respond to developing capabilities, fluctuating health status and changing needs and goals. Such models should target all three levels of the IMB model (Fisher et al., 2003) and include a focus on understanding and supporting the barriers to self‐management and motivation, as well as ways to enhance motivation, rather than solely focussing on information and education or behaviour change interventions, as has been the case to date (Cronly & Savage, 2019; Lozano & Houtrow, 2018; Malone et al., 2019; Sawyer & Aroni, 2005). A conceptualisation of the myriad of factors that require assessment and support to promote motivation and self‐management for young people with CF is provided in Figure 2.…”

“…The importance of agency and control to support self‐management in CF has been well described (Brennan, 2020; Cronly & Savage, 2019). However, this study highlights the importance of supporting self‐efficacy and control early in the developmental trajectory, especially for those approaching transition to adult services, to support motivation.…”

“…Young people with CF experience a myriad of impacts across biopsychosocial domains as they navigate heterogeneous development and manage fluctuating health, increasing care and the transition to adult care (Cronly & Savage, 2019; Keyte et al., 2019; McWilliams, 2019). These include impaired physical function, fertility, sexual function and body image; emotional function and mental health; quality of life; relationships; educational and vocational achievement; financial stability and existential wellbeing (Abbott, 2009; Duff & Latchford, 2014; Hogg et al., 2007; Kazmerski et al., 2018; Keyte et al., 2019).…”

“…For young people with chronic illness, self‐management support is an essential element of care to foster adherence, positive transition and optimal health outcomes (Allegrante et al., 2019; Araújo‐Soares et al., 2019; Sawyer & Aroni, 2005). However, the emergence of self‐management abilities for young people is a complex process that unfolds over time with developing capabilities and is influenced by social networks, psychological factors and health system engagement (Allegrante et al., 2019; Cronly & Savage, 2019; Lozano & Houtrow, 2018; Sawyer & Aroni, 2005). For those with CF, self‐management is further complicated due to the rapidity of health fluctuation and the complex nature of treatments (Lozano & Houtrow, 2018; Savage et al., 2014).…”

Is mHealth a useful therapy for improving physical or emotional health in adolescents with cystic fibrosis? A systematic review

“…It may have a greater impact on these patients. CF causes a general breakdown in the pattern of the adolescent’s daily life (change in routines, social roles, or limitation of recreational activities) (Cronly & Savage, 2019 ), the adolescent’s important self-concept of the body during this period may be affected, particularly because of growth deficits. The disease can influence social relationships, family, and friends, and cause them to feel different from their peers (Malone et al, 2019 ), and may be a threat to the need for independence among affected patients (Borschuk et al, 2016 ; Kaushansky et al, 2017 ).…”