Table 2.
Study visits and assessments
| Study Periods | Care Timepoint | Bereavement Timepoint | ||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Timepointa | Screening/ Baseline | CT1 | CT2 | CT3 | CT4 | CT5 | CT6 | CT7 | CT8 | Death of child | BT1 | BT2 | BT3 | BT4 |
| Time interval in days (Reference = 0) | 0 | 15 | 30 | 60 | 90 | 120 | 150 | 240 | 330 | 0 | 30 | 120 | 210 | 300 |
| Informed Consent / Demographic Data | x | |||||||||||||
| Inclusion / Exclusion Criteria | x | |||||||||||||
| Introduction of SPPC (PaPaS-Scale) | x | |||||||||||||
| Sense of coherence (FSOC) | x | |||||||||||||
| Family hardiness (FHI) | x | |||||||||||||
| Caregiver QOL (QOLLTI-F) | x | x | x | x | x | x | x | x | x | |||||
| Child’s QOL (disabkids) | x | x | x | x | x | x | x | x | ||||||
| Child’s symptoms (MSAS) | x | x | x | x | x | x | x | x | x | |||||
| Siblings QOL (KIDSSCREEN-27) | x | x | x | x | x | x | x | x | x | |||||
| Healthcare resource utilisation and costs | x | x | x | x | x | x | x | x | x | |||||
| Direct and indirect health-related expenditure | x | x | x | x | x | x | x | x | x | x | ||||
| Professional’s QOL (ProQOL) | xb | |||||||||||||
| Place of death | x | |||||||||||||
| Grief processes (WüTi) | x | x | x | x | ||||||||||
| Parental QOL (WHOQOL-BREF) | x | x | x | x | ||||||||||
| Siblings QOL (KIDSSCREEN-27) | x | x | x | x | ||||||||||
aThe timeframe to complete the questionnaire is 1 week
bProfessional’s QOL will be assessed after the first year of recruitment and after the second year, i.e. end of recruitment phase