Effectiveness of an ICF-CY-based intervention to strengthen shared decision-making and participation of patients with chronic health conditions or disabilities and their parents in Social Pediatric Care
Conditions
Interventions
Group 1: Intervention phase: (1) participation in a staff training program on the ICF-CY (International Classification of Functioning, Disability and Health for Children and Youth) and participation-o
Sponsors
Mannheimer Institut für Public Health, Sozial- und Präventivmedizin, Medizinische Fakultät Mannheim, Universität Heidelberg
Eligibility
Sex/Gender
All
Age
3 Years to 99 Years
Inclusion criteria
Inclusion criteria: Cross-sectional study sample: Parents: all parents having an appointment at the SPC on the weekly day of data collection Patients: all patients > 6 years having an appointment at the SPC on the weekly day of data collection Longitudinal study sample: Parents: all parents of patients > 2 and 6 years having an appointment at the SPC during the recruitment period
Exclusion criteria
Exclusion criteria: Cross-sectional study sample: Parents: (1) parents with a substantially limited command of German (e.g. migration background) (2) parents with severe cognitive disabilities Patients: (1) patients < 7 years (2) patients with a substantially limited command of German (e.g. migration background) (3) patients with severe cognitive disabilities (4) patients not having attended the appointment Longitudinal study sample: Parents: (1) parents with a substantially limited command of German (e.g. migration background) (2) parents with severe cognitive disabilities (3) parents of patients < 3 years (4) parents without planned appointments in the next 6 - 9 months (5) foster parents who presumably will not care for a patient for 2 years following the recruitment Patients: (1) patients < 7 years (2) patients with a substantially limited command of German (e.g. migration background) (3) patients with severe cognitive disabilities
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Parent-reported shared decision-making (SDM; instrument: CollaboRATE parent version) assessed in the cross-sectional study sample | — |
Secondary
| Measure | Time frame |
|---|---|
| Cross-sectional study sample: (1) parent proxy-reported SDM with patients (2) patient-reported SDM (in patients > 6 years) (3) parental satisfaction with care in SPC (4) patient satisfaction with care in SPC (in patients > 6 years) Longitudinal study sample: (5) parent proxy-reported social participation of patients (6) patient-reported health-related quality of life (in patients > 6 years) (7) parent proxy-reported health-related quality of life of patients (8) perceived stress of parents (9) parent-reported health care utilization | — |
Countries
Germany
Contacts
Public ContactFreia De Bock
Mannheimer Institut für Public Health, Sozial- und Präventivmedizin, Medizinische Fakultät Mannheim, Universität Heidelberg
Outcome results
None listed