Caregiver and patient education for spina bifida. Development of a questionnaire for families of children suffering from spina bifida in Austria covering the field of caregiver and patient education.

Caregiver and patient education for spina bifida. Development of a questionnaire for families of children suffering from spina bifida in Austria covering the field of caregiver and patient education. - SB-Educ

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00023891

Enrollment

Registered

2021-02-03

Start date

2021-02-10

Completion date

Unknown

Last updated

2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Caregivers of children with spina bifida, medical specialists, physiotherapists, clinical psychologists Q05

Interventions

Group 1: Phase 2: interviews with 6 caregivers of children with spina bifida at the age of <13 years and 8 experts (6 physiotherapists, 6 medical specialists) performed once (2 test interviews per gro

Eligibility

Sex/Gender

All

Age

25 Years to 75 Years

Inclusion criteria

Inclusion criteria: Inclustion Criteria (Experts) Phase 2: - fluent in german - at least 7 years of work experience in paediatrics - Constant (at least 30 hours / year) care of children suffering from spina bifida and their caregivers (Inclusion criteria below) Inclusion Criteria (Caregivers) Phase 2 and Phase 4: - direct relatives of children suffering from Spina Bifida (age under 13) - fluent in german - caregivers have no diagnosed cognitive deficits

Exclusion criteria

Exclusion criteria: Exclusion Criteria: - Children suffer from additional neurological or psychatric diseases

Design outcomes

Primary

Measure	Time frame
Development of a German-speaking questionnaire intelligible to all covering caregiver and patient education of children suffering from Spina Bifida (under the age of 13) with appropriate content and face validity covering the following points: - The contentment of caregivers regarding the education about spina bifida offered by health care professionals - The contentment of caregivers about the care and support offered by health care professionals around questions on spina bifida - The contentment of caregivers with the caregiver and patient education - The availability of German language caregiver and patient education material on the illness spina bifida	—

Measure

Time frame

Development of a German-speaking questionnaire intelligible to all covering caregiver and patient education of children suffering from Spina Bifida (under the age of 13) with appropriate content and face validity covering the following points: - The contentment of caregivers regarding the education about spina bifida offered by health care professionals - The contentment of caregivers about the care and support offered by health care professionals around questions on spina bifida - The contentment of caregivers with the caregiver and patient education - The availability of German language caregiver and patient education material on the illness spina bifida

—

Secondary

Measure	Time frame
Evaluation of the construct of patient education related to children with spina bifida and their caregivers	—

Countries

Austria

Contacts

Public ContactVerena Wutzlhofer

Freiberufliche Physiotherapeutin

verenawutzlhofer@gmail.com / verena.wutzlhofer@edu.donau-uni.ac.at+436602726614

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026