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Attending pediatric acutely ill patients at home: families' socioeconomic characterization, expectations, and
Astrid Batlle1, Santiago Thió-Henestrosa2, Imma Boada3
1Hospital Sant Joan de Déu, Barcelona, Spain. astrid.batlle@sjd.es.
Insights
Families in a pediatric hospital-at-home program reported satisfaction and would repeat the experience. However, some caregivers experienced anxiety, highlighting the need to support family well-being in acute pediatric homecare.
Area of Science:
- Pediatric Healthcare
- Homecare Services
- Family Medicine
Background:
- The SJD a Casa program, initiated in 2019, provides acute pediatric hospital-at-home care.
- Comprehensive evaluation of complex pediatric homecare programs, considering medical, social, economic, and family factors, is lacking.
- This study addresses the need for a detailed analysis of patient populations and family experiences in pediatric homecare.
Purpose of the Study:
- To characterize the population utilizing pediatric homecare programs.
- To gain a thorough understanding of families' needs and experiences within these programs.
- To identify potential areas for program improvement and address deficiencies.
Main Methods:
- Prospective quantitative and qualitative study design.
- Involved 372/532 families completing pre- and post-admission questionnaires.
- Assessed socioeconomic characteristics, expectations, experiences, and homecare preferences using frequency analysis and Fisher's exact test.
Main Results:
- Families reported adequate social networks and manageable workloads, with most willing to repeat the homecare experience.
- Caregiver well-being expectations were higher than reality, with some experiencing anxiety or fear.
- Homecare received a better rating compared to prior inpatient care.
Conclusions:
- Families were generally content with the pediatric homecare program and indicated willingness to use it again.
- Short-term homecare may lead to caregiver burnout symptoms like anxiety, necessitating consideration.
- The study suggests focusing on vulnerable family access and caregiver burnout risk to enhance services.
Background:
SJD a Casa is an acute pediatric hospital-at-home program that was initiated in 2019. For a thorough understanding of acute pediatric homecare programs, an analysis of all related factors, including the medical, social, and economic aspects as well as the family's experience, is essential. However, no previous study has attempted a comprehensive evaluation of this topic in relation to a complex program such as ours (in terms of the diseases and treatments offered). In this study, we aimed to finely characterize the population that opts for pediatric homecare programs and obtain a thorough understanding of the families' needs, which will improve our understanding of the program and potentially reveal possible deficiencies.
Methods:
This prospective quantitative and qualitative study involved collection of ordinal data as well as statements made by the caregivers of patients undergoing homecare. A total of 372/532 families were asked to answer two independent questionnaires (preadmission and postadmission) that evaluated their socioeconomic characteristics; expectations and experiences; and factors influencing the preference for homecare. The results were presented as frequencies and comparisons (Fisher's exact test).
Results:
The families had an adequate social network and a less-than-expected workload, and most families responded that they would have repeated the experience despite the workload. The expectations regarding the caregiver's well-being at home were better than the actual situation, since some caregivers experienced anxiety or fear. The rating for homecare was better than that for the inpatient care offered before the homecare transfer.
Conclusions:
Families included in the program were content with the homecare program and mostly responded that they would repeat the experience if needed. Although the duration of the program was short-term, some caregivers may experience symptoms of burnout like anxiety, which should be taken into consideration. Despite its limitations, this study offers the possibility of improving our service portfolio by focusing on vulnerable families' access to the program and the caregiver's risk of burnout.
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