Table 3 Key study characteristics

Eligible parents

Any parents or caregivers (49)

Mothers (9)

Families (5)

Mother and female relatives (1)

Parents and grandmothers (1)

Not specified (24)

Rare diseases (2)

Cancer, asthma and diabetes (1)

Chronic kidney disease (1)

Coronary heart disease (1)

Cystic fibrosis (1)

Eczema (1)

Epilepsy (1)

Hematology and oncology (1)

Hemophilia (1)

Rett Syndrome (1)

Sickle cell disease (1)

Single ventricular defects (1)

Technology assisted lung disease (1)

Thalassemia (1)

US (24)

UK (9)

Australia (6)

Canada (6)

Germany (3)

Switzerland (3)

Iceland (2)

Sweden (2)

Chile (1)

China (1)

Denmark (1)

Iran (1)

Japan (1)

Malaysia (1)

Mexico (1)

New Zealand (1)

Spain (1)

Thailand (1)

Intensity

<  1 h (4)

1–2 h (3)

3–5 h (6)

6–10 h (16)

11–16 h (7)

17–24 h (6)

>  24 h (2)

Unclear (8)

Varies (13)

Unclear (14)

Multi-disciplinary team (11)

Peers (7)

Nurse (6)

Written / audio / visual (6)

Psychologist (4)

Health professional and peers (3)

Counsellor (2)

Other – qualified (2)

Program specific trained practitioner (2)

Psychologist and peers (2)

Doctor (1)

Financial counsellor (1)

Massage therapist (1)

Psychiatrist (1)

Qualified non-specialist (1)

Doctor and charity (1)

Multiple specified conditions

Asthma and / or allergies and / or eczema (1)

Autism Spectrum Condition and intellectual and/or complex disabilities (1)

Cystic fibrosis, spina bifida or diabetes (1)

Life-threatening conditions (1)

Lupus erythematosus and nephritis (1)

Type 1 Diabetes and Irritable Bowel Disease (1)

Age of child

Child age specified (33)

Child age not specified (32)

Care trajectory point

Long term community / outpatients (41)

During hospital admission (17)

Before elective admissions (2)

Both inpatients and outpatients (2)

Hospital admission (1)

New diagnosis (1)

Not clear (1)

Single conditions

Type 1 Diabetes (6)

Cancer (4)

Asthma (3)

Chronic pain (2)

Disabilities (2)

Juvenile Rheumatoid Arthritis (2)

Format

Face-to-face (47)

Remote (12)

Both (4)

Not clear (1)

Online (5)

Telephone (4)

Recorded information (2)

Email (1)

Mixed (2)

Videoconferencing (1)

Workbook (1)

Interactive (60)

Not interactive (4)

Not clear (1)