The Exploration of the Experiences of Self-Management in Young People with Cystic Fibrosis

Abstract

Background: Cystic fibrosis (CF) is an inherited condition caused by a faulty gene. It can cause problems with breathing due to a build-up of sticky mucus in the lungs, this mucus can also cause problems with digestion and absorption of nutrients which can result in weight loss. Living with CF can often come with an element of self-management, people with CF often have lengthy treatment regimens to reduce side effects of their condition. Literature: A review of the literature identified several factors that influences selfmanagement of CF in young people, four themes emerged; barriers to self-management such as lengthy treatment regimens and competing priorities; facilitators to self-management such as a good relationship with CF team and development of structure; parental support, promotion of autonomy and self-management; and the role of technology in selfmanagement. Aims: To explore the experiences of self-management in young people with cystic fibrosis Methodology: Using an interpretive phenomenological approach which lies within the qualitative paradigm, online semi-structured interviews will be carried out with 5 participants aged 18- 21 years who are about to attend university. Participants will be recruited from three different CF centres in Scotland. Interviews will consist of open-ended questions to gather indepth data about the individual’s experiences. Three stages of interviews will be performed to explore any changes in their self-management during their transition to university. Conclusion: There were common themes identified in the literature which suggests that young people with CF experience similar influences on their self-management. However, none of the publications used more than one round of interview to establish if their selfmanagement had changed over time. This research will allow for young people, their parents and CF team to prepare for anticipated changes and would allow for appropriate services to be made available to help support them and educate health care professionals of the potential influences on their self-management.