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

BACKGROUND: Although the importance of patient empowerment is increasingly recognized, little is known about empowerment in children and young people (CYP) with long-term conditions. Empowerment may be particularly important in CYP with cystic fibrosis (CF) due to high treatment burden and limited opportunities for peer support. METHODS: A Grounded Theory method was employed to develop a preliminary theory of empowerment in CYP with CF. Seven CYP with CF, five parents and four professionals were interviewed. RESULTS AND CONCLUSIONS: The emerging model suggests that 'thriving alongside CF' may be supported by interactions between 'having a team' and 'taking charge and having a voice', leading to 'being able to just be a child', that 'concealing self' may get in the way of 'thriving alongside CF' and that these processes occur within wider medical and developmental contexts. Study limitations, clinical and research implications are discussed.

Disorders of sex development: Mothers' experiences of support.

BACKGROUND: An increasing body of research has sought to determine the impact of Disorders of Sex Development (DSD) on the family of the affected child. Little is currently understood about the support needs of the family and how well these needs are met. METHODS: Interpretive Phenomenological Analysis was used to analyse semi-structured interviews with eight mothers of children with DSD about their experiences of support. RESULTS: Four master themes emerged which encapsulated (a) the stages in their child's development when mothers most needed support, (b) the importance of developing an understanding of the child's condition, (c) the lack of acknowledgement of the emotional needs of the parent and (d) the importance of having close and trusted networks for support. Continuity and availability of support were considered important and while all participants prioritised maintaining privacy about the condition, a minority felt that this impacted the level of support they received. CONCLUSIONS: Key time points for support were identified and while some felt that they were well supported others felt that the support available did not meet their emotional needs. Clinical implications and directions for future research were considered.