Anxiety symptoms in parents of children with rare disease
Conditions
Interventions
Group 1: WEP-CARE is a brief manualized cognitive-behavioral intervention, in form of an internet-based writing therapy. WEP-CARE comprises 12 writing assignments (i.e. treatment sessions), over a per
Representation of a goal
Coping with anxiety
Self-care
Reflection and Integration of the therapy contents and Relapses prevention. The intervention is offered in addition to the usual care and will be delivered by carefully trained and supervised psycholo
Sponsors
Land Baden-Württemberg vertreten durch das Universitätsklinikum Ulm
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: The study participants are parental caregivers of a child with rare chronic diseases: Age of the index child 0-25 years; Child with diagnosis of a rare chronic disease or suspicion of the child´s RCD; Caregiver´s clinically relevant psychological stress with elevated anxiety symptoms (raw score = 7 in the GAD-7); Access to the Internet during the study participation; Sufficient knowledge of the German language (caregivers); Informed consent for the study participation
Exclusion criteria
Exclusion criteria: Acute suicidality; Psychotic symptoms
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Anxiety symptoms, measured by the General Anxiety Disorder Questionnaire (GAD-7; Spitzer, Kroenke, Williams et al, 2006), as an online questionnaire at the end of the intervention or waiting period. | — |
Secondary
| Measure | Time frame |
|---|---|
| Fear of Progression (262 Fear of Progression Questionnaire for Caregivers of Youth with Cystic Fibrosis, FoP-Q/C; Fidika, Mai, Herle & Goldbeck, 2014), at the end of the intervention or waiting period; Depressive symptoms (Depression module of the Patient Health Questionnaire PHQ-9; Leo, Kroenke, Duke et al, 2004), at the end of the intervention or waiting period; Quality of life (Ulmer Quality of Life Inventory for Parents of Chronically Ill Children, ULQIE; Goldbeck & Storck, 2000), at the end of the intervention or waiting period; Coping (Questionnaire on Parental Coping, CHIP-D; McCubbin, McCubbin, Cauble & Goldbeck , 2001), at the end of the intervention or waiting period; Quality of life of the child with RCD (was additionally assessed via three questions targeting emotional and physical well-being and the quality of the relationships of the chronically ill child), at the end of the intervention or waiting period; Utilization of health services (Number of checkups, hospital days), at the end of the intervention or waiting period. | — |
Countries
Germany
Outcome results
None listed