Aims. To identify and critique literature on the adolescent lived experience of chronic illness;
describe the lived experience; and to make recommendations for clinical practice …

Aims. To critique existing concept analyses of quality of life and develop a definition
applicable for young people with chronic illness. Background. Quality of life is a commonly …

Background Thalassemia is a common disorder worldwide with a predominant incidence in
Mediterranean countries, North Africa, the Middle East, India, Central Asia, and Southeast …

This paper begins by giving a description of the relationship between austerity and the
neoliberal policy focus on work in the UK, and how this impacts negatively on disabled …

Background Childhood long‐term conditions are usually diagnosed in infancy or early
childhood. Little is known about the particular experiences and needs of young people who …

Children and youth with progressive conditions are living longer, and there is increased
interest in designing programs that will assist them with “transitioning” to adulthood. Almost …

The principal aim of our study was to investigate whether patients transplanted more than 20
years ago for β-thalassemia major had a different health-related quality of life (HRQoL) …

Introduction The transition into adulthood is a developmental stage within the life cycle. A
chronic childhood condition can disrupt this transition and create major challenges for both …

The decision to use participatory visual methods with young people in education, health or
public policy research is linked to a desire to allow them to have some greater voice in the …

This qualitative study used the long interview method with Canadian mothers of African and
Caribbean descent to understand the underresearched experience of raising a child with …