Table 1.
Summary of the measures included in the take a breath cohort study
| Construct | Measure | Source | Time-point | |||
|---|---|---|---|---|---|---|
| 1 | 2 | 3 | 4 | |||
| Outcome Measures | ||||||
| Parent Distress | Posttraumatic Stress Checklist-Specific Version (PCL-S) [40] | P | * | * | * | |
| Post traumatic growth | Post Traumatic Growth Inventory – Short form [41] | P | * | |||
| Child psychopathology | The Brief Infant Toddler Social Emotional Assessment [42], or Strengths and Difficulties Questionnaire (SDQ) [43] | P | * | * | * | |
| Strengths and Difficulties Questionnaire (SDQ) [43] | C | * | * | * | ||
| Parent Report of Posttraumatic Stress Symptoms [44] | P | * | * | * | * | |
| Child Report of Posttraumatic Stress Symptoms [44] | C | * | * | * | ||
| Child wellbeing | PEDS Quality of Life (6 years+) [45] or TNO-AZL Preschool Children Quality of Life (1–5 years) [46] | P | * | * | * | |
| PEDS Quality of Life [45] | C | * | * | * | ||
| Illness Related Factors | ||||||
| Illness variables | Severity of Illness Scale [47] | MD | * | |||
| Demographic Factors | ||||||
| Demographics | General questionnaire of parent demographic information (eg. age, years of education, ethnicity) | P | * | |||
| Health Economy | General questionnaire of health economy factors (eg. level of income, services used in the hospital and in the community) | P | * | * | * | * |
| Psychosocial Factors | ||||||
| Psychosocial factors | Psychosocial Assessment Tool (PAT 2.0) [48] (assessing psychosocial risk factors such as family structure, family beliefs, access to services and transport) | P | * | * | * | * |
| Psychosocial Assessment Tool (PAT-S) [25] | SW | * | * | |||
| Parent distress/ wellbeing | Acute Stress Disorder Scale (ASDS) [49] | P | * | |||
| Depression Anxiety Stress Scale Short Form (DASS-21) [50] | P | * | * | * | * | |
| Assessment of QoL (AQOL) [51] | P | * | * | * | * | |
| State Trait Anxiety Scale [52] | P | * | ||||
| Family Functioning | Family Environment Scales [53] | P | * | |||
| Moderators | ||||||
| Experience of Illness | Parent Experience of Child Illness (PECI) [54] | P | * | * | * | |
| Family Management Measure [55] | P | * | * | * | ||
| Benefit Burden Scale - Children [56] | C | * | * | * | ||
* = measure administered at this time point, P = Parent reported measures, MD = Doctor reported measures, SW = Social Worker reported measures, C = Child reported measures, Timepoint 1 = acute (within first month since hospitalization/diagnosis), Timepoint 2 = three months after Timepoint 1 (four months since hospitalization/diagnosis), Timepoint 3 = six months after Timepoint 1 (seven months since hospitalization/diagnosis), Timepoint 4 = 18 months after Timepoint 1 (19 months since hospitalization/diagnosis)