Outcome
Type |
Measure |
Description |
Time frame |
Safety issue |
Primary |
Quality of life of the parents (ULQIE) |
Quality of life (QoL) of the parents, assessed from the perspective of the parents by the "Ulmer Lebensqualitätsinventar fu¨r Eltern chronisch kranker Kinder" (ULQIE; Goldbeck & Storck, 2002). The instrument consists of 29 items, which are answered on a five-point Likert scale (0 to 4). Higher scores indicate greater QoL. |
4 minutes |
|
Primary |
Mental health of the parents (BSI) |
Mental health of the parents, assessed from the perspective of the parents by the "Brief Symptom Inventory" (BSI; Franke, 2000). The instrument consists of 53 items, which are answered on a five-point Likert scale (0 to 4). Higher BSI scores indicate greater psychological distress. |
5 minutes |
|
Primary |
Health-related quality of life of the chronically-ill children/adolescents (Peds-QL 4.0) |
Health-related quality of life of the chronically-ill children/adolescents, assessed from the perspective of the child/adolescent (from 10 years of age) and from the perspective of the parents by the "Pediatric Quality of Life Inventory 4.0" (Peds-QL 4.0; (Varni, Seid, & Kurtin, 2001). Items will be linearly transformed to a scale of 0 to 100, with higher scores indicating better HRQoL. |
4 minutes |
|
Primary |
Psychiatric disorders of the chronically-ill children/adolescents and the siblings (SDQ) |
Psychiatric disorders of the chronically-ill children/adolescents and the siblings assessed perspective of the child/adolescent (from 10 years of age) and from the perspective of the parents by the "Strengths and Difficulties Questionnaire" (SDQ; Klasen, Woerner, Rothenberger, & Goodman, 2003). Items are rated on a three-point Likert scale (0 to 2). Higher scores represent greater psychopathology or greater prosocial behavior. |
4 minutes |
|
Secondary |
Coping of the parents (CHIP-D) |
Coping of the parents, assessed from the perspective of the parents by the German version of the "Coping Health Inventory for Parents" (CHIP-D; McCubbin, McCubbin, Cauble & Goldbeck, 2001). Items are rated on a four-point Likert scale (0 to 3). Higher scores represent greater use of the respective coping pattern. |
3 minutes |
|
Secondary |
Coping of the chronically-ill children/adolescents and the siblings (Kidcope) |
Coping of the chronically-ill children/adolescents and the siblings, assessed from the perspective of the children/adolescents (from 10 years of age) by the "Kidcope Checklist" (Kidcope; Spirito, Stark & Williams, 1988). Items related to frequency of the coping strategies are rated on a 4 point scale (0 = "Not at all" to 3 = "Almost all the time"), and items related to efficacy are rated on a 5 point scale (0 = "Not at all" to 4 = "Very much"). |
3 minutes |
|
Secondary |
Social support of the parents, of the chronically-ill children/adolescents and of the siblings (OSSS) |
Social support of the parents, of the chronically-ill children/adolescents and of the siblings, assessed from the perspective of the parents, of the chronically-ill children/adolescents and from the sibling, respectively, by the "Oslo Social Support Scale" (OSSS; Dalgard, 2006). The sum score ranges from 3 to 14. The higher the sum score, the stronger the social support. |
3 minutes |
|
Secondary |
Sociodemographic information of the parents |
Sociodemographic information of the parents, assessed from the perspective of the parents by ad-hoc items. |
2 minutes |
|
Secondary |
Relationships between siblings (SRQ) |
Sibling relationship, assessed from the perspective of the siblings (from 10 years of age) by the "Sibling Relationship Questionnaire" (Bojanowski, Riestock, Nisslein, Weschenfelder-Stachwitz, & Lehmkuhl, 2015). Each item is scored on a 5-point Likert scale (1 to 5). |
3 minutes |
|
Secondary |
Family relationships, family dynamics and functionality (FB-A) |
Family relationships, family dynamics and functionality, assessed from the perspective of the parents, of the chronically-ill children/adolescents and from the sibling, respectively by "Familienbögen" (FB-A; Cierpka & Frevert, 1994). Items are rated on a four-point Likert scale (0 to 3) |
3 minutes |
|
Secondary |
Interpersonal problems (IIP-32) |
Interpersonal problems assessed from the perspective of the parents by the "Inventory of Interpersonal Problems-32" (IIP-32; Thomas, Brähler, & Strauß, 2011). Items are rated on a four-point Likert scale from 0 (not at all) to 4 (extremely). It provides an overall score and eight subscale scores. |
3 minutes |
|
Secondary |
Familial predispositions (FaBel) |
familial predispositions assessed from the perspective of the parents by the "Familien-Belastungs-Fragebogen" (FaBel; Ravens-Sieberer, 2001). Items are rated on a four-point Likert scale ranging from 1 (is not right at all) to 4 (is completely right). |
3 minutes |
|