Table 2 Interview topic guides

CYP

1. Experience of living with SCD in general

a. Daily life with SCD and severity of condition (symptoms, hospital stays)

b. Impact on daily life (physical, social, educational/academic, emotional/mental, employment)

c. Influence on relationships– parents, siblings, peers, intimate partners

d. Self-management– practices, challenges/difficulties, challenges in different contexts (home, school, work, other)

e. Support (sources, types, helpful/unhelpful) and support needs

2. Experience of fatigue

a. Nature of fatigue– description, explanation of feeling of fatigue

b. Impact of fatigue– physical, social, educational/academic, emotional/mental, employment

c. Factors influencing fatigue– contributory factors, alleviating factors, contextual (personal, family, social, educational, employment)

d. Concerns and worries about fatigue

3. Self-management of fatigue

a. Day-to-day self-management– practices, experiences and concerns

b. Challenges in different environments– home, hospital, school, work, other

c. Views about current support (forms, sources, helpful/unhelpful)

d. Support needs and perceptions of unmet support needs

Parents

1. Experience of SCD in general

a. Severity of child’s condition (symptoms, hospital stays)

b. Impact of SCD on child’s and family’s life

2. Management of child’s conditions

a. Practices and strategies

b. Concerns about managing child’s condition

c. Challenges/difficulties in different contexts (home, school, work)

d. Support (sources, types, helpful/unhelpful), support needs (perceptions and concerns)

e. Perceptions of child’s self-management skills

f. Views about transferring management responsibilities to the child

g. Experiences and concerns regarding role transfer

3. Child’s fatigue experience

a. Perceptions of the nature of child’s fatigue– description of child’s fatigue

b. Impact of child’s fatigue on child and family’s life

c. Factors influencing child’s fatigue

d. Concerns and worries about child’s fatigue

e. Strategies for managing child’s fatigue

f. Experiences of providing support

g. Experiences of healthcare provision for child’s fatigue

4. Management of fatigue

a. Day-to-day self-management– practices, experiences, concerns

b. Challenges in different environments– home, school, work

c. Views about current support (forms, sources, helpful/unhelpful)

d. Support needs and perceptions of unmet needs

Healthcare professionals

1. SCD care in general

a. Organisation of services and standards of care

b. Current treatments and support programmes

c. Views and concerns about current care

2. Self-management among CYP

a. Preparation of CYP for self-management

b. Current programmes used to support self-management

c. Barriers/facilitators to providing self-management support

3. Perspectives on SCD fatigue

a. Causes- biological, psychological, social

b. Influencing factors– contributing and alleviating factors

c. Impact of fatigue on CYP

d. Vies and concerns about fatigue in CYP

4. Fatigue management

a. Current treatment/support programmes for fatigue

b. Experiences of providing fatigue support to CYP and families

c. Barriers/facilitators to providing fatigue support and self-management interventions