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Parents' preferences for respite care of children with medical complexity
Yoshiko Yamamoto1, Ai Aoki1, Hiroshi Fuji2
1Department of Health Policy, National Center for Child Health and Development, Tokyo, Japan.
Insights
Parents of children with medical complexity (CMC) prioritize high-level medical care, especially ventilator management, in respite services. They are willing to pay approximately 75,367 JPY per night for optimal care.
Area of Science:
- Pediatric healthcare
- Medical support services
- Family caregiving
Background:
- Increasing global prevalence of children with medical complexity (CMC).
- Significant unmet need for short-stay respite care services for CMC and their families.
- Legislated support exists, but preferences for respite care quality require investigation.
Purpose of the Study:
- To investigate parents' preferences for short-stay respite care attributes.
- To determine parents' willingness to pay for different levels of respite care.
- To inform the development of improved respite care services for CMC.
Main Methods:
- Discrete Choice Experiments (DCEs) utilized to assess preferences and willingness to pay.
- Questionnaire administered to parents of children utilizing overnight respite care.
- Conditional logit model applied for DCE data analysis.
Main Results:
- 70 parents participated; their children had a mean age of 7.8 years.
- 96% of children had severe disabilities; 38% required home ventilators.
- Highest preference for respite care with advanced medical capabilities, including ventilator management (coefficient 1.61).
- Parents willing to pay ~75,367 JPY/night for the highest level of medical care.
Conclusions:
- Respite care services must offer advanced medical support, particularly for ventilator-dependent CMC.
- Parental preferences highlight the need for specialized care to ensure safety and well-being.
- Findings provide a foundation for enhancing and expanding respite care options for these families.
Background:
The number of children with medical complexity (CMC) is increasing worldwide. For these children and their families, various forms of support are legislated; among them, short-stay respite care has a great unmet need. We examined such children's parents' preferences for respite care and their willingness to pay.
Methods:
We used discrete choice experiments (DCEs) to estimate the parents' preferences and willingness to pay. Parents whose children used overnight short-stay respite services answered a questionnaire to compare two hypothetical facilities of respite care having seven attributes and three levels. The DCE data was analyzed using the conditional logit model. The willingness to pay was calculated based on DCE estimates.
Results:
A total of 70 parents participated in this study and mean age of their children was 7.8 years (standard deviation [SD] 4.3). Among those children, 67 (96%) had the severest certification of disability, and 27 (38%) used a ventilator at home. We found that the parents' highest preferences was the best level of medical care level that can manage ventilators (coefficient 1.61, 95% confidence interval [CI]: 1.32-1.90). The better and best level of medical care, daily care, education/nursing, and emergency care were preferred over basic quality services. Willingness to pay for the best level of medical care was approximately 75,367 JPY per night.
Conclusion:
This study shows a need for respite care that can deliver high-level medical care, especially for the management of ventilators, to CMC. This finding can serve as a basis for promoting respite care services.
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