Caregiver Burden, Quality of Life, Family Function and Family Resilience Among Caregivers of Children With Medical Complexity.
NCT Number: NCT06503419
Status: NOT_YET_RECRUITING
Study Type: OBSERVATIONAL
Conditions: Caregiver Burden|Quality of Life|Family Function|Family Resilience
Interventions: OTHER: non-intervention
Sponsor: National Taiwan University Hospital
Sex: ALL
Age: ADULT, OLDER_ADULT
Enrollment: 400
Study Design: Observational Model: |Time Perspective: p
Start Date: 2024-08-01
Completion Date: 2025-06-30

Summary:
The purpose of this study is to employ a mixed methods research approach combining quantitative and qualitative methods to thoroughly understand the relationships among caregiver burden, quality of life, family functioning, and family resilience of children with medical complexity (CMC). The study aims to explore the individual and social factors influencing these variables and investigate the factors impacting caregiver burden, quality of life, family functioning, and family resilience of CMC caregivers. Finally, an integrative analytical framework will be proposed. The study seeks to provide guidance and recommendations for social support for caregivers of children with medical complexity in caregiving practices, aiming to promote the development of relevant policies and services.

Primary Outcome Measures: Caregiver Burden Inventory (CBI), Scale: 0 to 96, with higher scores indicating greater caregiver burden. Description: This measure will assess the time dependence, developmental, physical, social, and emotional burdens experienced by caregivers of children with medical complexity., Less than 1 hour.|Quality of Life [Short Form Health Survey (SF-12)], Scale: 0 to 100 for each domain, with higher scores indicating better quality of life.

Description: This measure will evaluate the physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional, and mental health of caregivers., Less than 1 hour.|Family Function (Family APGAR), Scale: 0 to 10, with higher scores indicating better family function. Description: This measure will assess family adaptability, partnership, growth, affection, and resolve., Less than 1 hour.|Family Resilience Scale, Scale: 31 to 155, with higher scores indicating greater family resilience. Description: This measure will evaluate the belief systems, organizational patterns, and communication processes of families dealing with children with medical complexity., Less than 1 hour.|Qualitative Understanding of Caregiver Experiences by Semi-structured Interviews, This measure will complement the quantitative data by providing in-depth insights into the personal experiences, challenges, coping strategies, and perspectives of caregivers of children with medical complexity. Thematic analysis will be conducted on the qualitative data to identify key themes and factors influencing caregiver burden, quality of life, family function, and family resilience.Description: This measure will complement the quantitative data by providing in-depth insights into the personal experiences, challenges, coping strategies, and perspectives of caregivers of children with medical complexity., About 1 hour.