Caregiver Burden, Quality of Life, Family Function and Family Resilience Among Caregivers of Chil… (NCT06503419) | Clinical Trial Compass
Not Yet RecruitingNot Applicable
Caregiver Burden, Quality of Life, Family Function and Family Resilience Among Caregivers of Children With Medical Complexity.
400 participantsStarted 2024-08-01
Plain-language 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.
Who can participate
Age range20 Years
SexALL
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Inclusion criteria
✓. Must be the primary caregiver of a child with medical complexity, providing care for at least 12 months.
✓. Aged 20 years or older.
✓. Must be a cohabiting family member of the child and have a biological relationship with the child.
✓. Willing to participate in the study.
✓. The child with medical complexity being cared for by the participant is between the ages of 1 and 20, diagnosed by a physician with a chronic illness or disability. The child requires the use of medical equipment or devices at home, including respiratory support equipment such as tracheostomy care supplies, artificial ventilation masks, mechanical ventilators (respirators), oxygen concentrators and tanks, suction machines, and percussion vests; nutritional and medication devices such as gastric tubes (nasogastric or percutaneous gastrostomy tubes), enteral feeding pumps, and intravenous catheters; mobility aids including wheelchairs, walkers, and rehabilitation assistive devices; monitoring equipment such as electrocardiogram (ECG) monitors, blood pressure monitors, thermometers, and pulse oximeters; and other medical equipment such as urinary bags and catheters, and pain management pumps (e.g., PCA). Additionally, due to their condition, the child receives regular medical examinations or treatments.
Exclusion criteria
What they're measuring
1
Caregiver Burden Inventory (CBI)
Timeframe: Less than 1 hour.
2
Quality of Life [Short Form Health Survey (SF-12)]
Timeframe: Less than 1 hour.
3
Family Function (Family APGAR)
Timeframe: Less than 1 hour.
4
Family Resilience Scale
Timeframe: Less than 1 hour.
5
Qualitative Understanding of Caregiver Experiences by Semi-structured Interviews