Table 1.

Review of qualitative studies examining QOL for children and youth with chronic conditions

Study	Year	Condition/disability	Sample size	Age range	Concept explored	Themes/domains/factors
Ronan et al.	1999	Epilepsy	29	6–10	HRQOL	Experience of epilepsy, life fulfillment and time use, social issues, impact of epilepsy, attribution
McEwan et al.	2004	Epilepsy	22	12–18	QOL and psychosocialdevelopment	Peer acceptance, development of autonomy, school-related issues, epilepsy as part of me, future
Berntsson et al.	2007	Long-term illness or disability (e.g., postcerebral tumour, cystic fibrosis, heart disease)	15	12–19	Well-being	Feeling of acceptance/disability as a natural part of life, feeling of support, feeling of personal growth
Nicholas et al.	2007	Inflammatory bowel disease	80	7–19	HRQOL	Treatment and symptom concerns, vulnerability and lack of control, negative self-perception relative to peers, benefits of social support, personal resources in coping
Young et al.	2007	Cerebral palsy	28	8–13	HRQOL	Social relationships, home and school environment, self and body, recreational activities and resources, relationships with family members other than parents, inclusion and fairness, home life and neighborhood, pain and discomfort, environmental accommodation of needs
Davis et al.	2008	Cerebral palsy	17	13–18	QOL	Physical health and physical changes, functioning, pain and discomfort, communication, social well-being and acceptance, relationships and sexuality, participation, independence and transitioning, emotional wellbeing, and self-esteem, acceptance of disability, supportive physical environment and equipment, getting on well at school
Shikako-Thomas et al.	2009	Cerebral palsy	12	12–16	QOL	Intrinsic strengths (managing challenges, self-perceptions, self-advocacy, mastery, aspects of cerebral palsy (severity, aging with a disability), family, peers, school, community, perceptions of others, pursuing preferences in the face of obstacles
Vinson et al.	2010	Cerebral palsy	41	6–12	QOL	Family, friends, pets, hobbies, physical play, physical health/physical needs, school/education, religion, electronics, entertainment, travel
Parkinson et al.	2011	Cerebral palsy	28	8–13	HRQOL	Social relationships, home environment, school environment, self and body, recreational activities and resources
Foley et al.	2012	Disability (e.g., cerebral palsy, autism spectrum disorder, Down syndrome)	20	8–16	Well-being	Having things to do, good friends, home and family life, anxiety about school performance, managing life issues (coping with peers, striving toward goals, developing skills), feeling good about oneself
Panepinto et al.	2012	Sickle cell disease	13	5–18	HRQOL	Pain (severity, limiting activities, fear), fatigue (affects school, work, sleep) emotions, symptoms and treatment, social relationships, communication with peers, healthcare providers
Squitieri et al.	2013	Neonatal brachial plexus palsy	18	10–17	QOL	Social impact and peer acceptance, emotional adjustment and psychological coping, body image concerns, functional limitations, physical and occupational therapy, pain, family dynamics
Hill et al.	2014	Osteogenesis imperfecta	10	6–17	HRQOL	Keeping safe, reduced function, pain, fear, independence, isolation/being different
Skjerning et al.	2014	Celiac disease	23	8–18	HRQOL	Symptoms, diagnosis process, self-perception, social and emotional impact of disease, thoughts about future, coping with food, coping with social situations

QOL quality of life, HRQOL health-related quality of life