Improving the quality of care for children with chronic health conditions and disabilities by strengthening participation in Social Pediatric Centers

Not Applicable

Conditions: 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

Registration Number: DRKS00015054

Lead Sponsor: Mannheimer Institut für Public Health, Sozial- und Präventivmedizin, Medizinische Fakultät Mannheim, Universität Heidelberg

Brief Summary: Not available

Detailed Description: Not available

Recruitment & Eligibility

Status: Pending

Sex: All

Target Recruitment: 12000

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 < 16 years having an appointment at the SPC during the recruitment period

Patients:
all patients > 6 years having an appointment at the SPC during the recruitment period

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

Study & Design

Study Type: interventional

Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Parent-reported shared decision-making (SDM; instrument: CollaboRATE parent version) assessed in the cross-sectional study sample

Secondary Outcome Measures

Name	Time	Method
Cross-sectional study sample:<br>(1) parent proxy-reported SDM with patients<br>(2) patient-reported SDM (in patients > 6 years)<br>(3) parental satisfaction with care in SPC <br>(4) patient satisfaction with care in SPC (in patients > 6 years)<br><br>Longitudinal study sample:<br>(5) parent proxy-reported social participation of patients<br>(6) patient-reported health-related quality of life (in patients > 6 years)<br>(7) parent proxy-reported health-related quality of life of patients <br>(8) perceived stress of parents<br>(9) parent-reported health care utilization