Table 3 Questionnaires of the quantitative evaluation of the study

Parents of children under 6 years (includes parents of newly diagnosed children under 6 years)

T0, T2, T3

Cantril ladder, WHO-5

Sociodemographic data, diagnosis-specific items, social support, gender, maleness and femaleness, shame, self-esteem, disease burden and general coping, knowledge

Parents of children older than 6 years (includes parents of newly diagnosed children older than 6 years)

T0, T2, T3

Cantril ladder, KINDL-R parents, WHO-5

Sociodemographic data, diagnosis-specific items, social support, gender, maleness and femaleness, shame, self-esteem, disease burden and general coping, knowledge

Children 6–13 years

T0, T2, T3

Cantril ladder, KINDL-R (version 7–13 years), CODI (for children older than 7 years), BIS (for children older than 12 years)

Sociodemographic data, diagnosis-specific items, social support, gender, maleness and femaleness, shame, self-esteem, disease burden and general coping, knowledge

Adolescents 14–17 years

T0, T2, T3

Cantril ladder, KINDL-R (version 14–17 years), CODI, BIS

Sociodemographic data, diagnosis-specific items, social support, gender, maleness and femaleness, shame, self-esteem, disease burden and general coping, knowledge

Young adults 18–14 years

T0, T2, T3

Cantril ladder, WHO-5, BIS

Sociodemographic data, diagnosis-specific items, social support, gender, maleness and femaleness, shame, self-esteem, disease burden and general coping, knowledge

Children and adolescents 6–17 years

T1

satisfaction with programme, short version

Young adults 18–14 years

T1

Adapted ZUF-8

satisfaction with education

Parents of all children and adolescents

T1

Adapted ZUF-8

satisfaction with education