Patient and Family Experience in a Multidisciplinary Clinic for Children With Single-Ventricle Heart Disease
| Autor: | Sarah L. Kelly, Kelly R. Wolfe, Carey Rafferty, Michael V. Di Maria, Adel K. Younoszai, Deborah R. Liptzin, Dania Brigham |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
Pediatrics
medicine.medical_specialty Health (social science) Heart disease Leadership and Management 030204 cardiovascular system & hematology Hypoplastic left heart syndrome 03 medical and health sciences single ventricle 0302 clinical medicine Multidisciplinary approach 030225 pediatrics medicine family experience survey Research Articles Organ system lcsh:R5-920 business.industry Health Policy hypoplastic left heart syndrome medicine.disease multidisciplinary clinic medicine.anatomical_structure Ventricle lcsh:Medicine (General) business Fontan |
| Zdroj: | Journal of Patient Experience Journal of Patient Experience, Vol 7 (2020) |
| ISSN: | 2374-3743 2374-3735 |
| DOI: | 10.1177/2374373520904214 |
| Popis: | Children with single-ventricle heart disease (SVHD) are at risk for morbidity across multiple organ systems. A single-ventricle multidisciplinary clinic (SVMDC) may address complex health-care needs by providing access to, and coordination among, pediatric subspecialties. However, the patient and family experience of multidisciplinary care for SVHD remains unexplored. We e-mailed a 26-question survey to families after an SVMDC visit, which included evaluation with subspecialists from cardiology, pulmonology, gastroenterology, neuropsychology, and pediatric psychology, as well as social activities during clinic. Responses were anonymized to protect privacy, and data were analyzed quantitatively and qualitatively. Over 3 years, 22% (27/122) of families completed the survey. Overall, families’ experiences were positive, with 100% reporting that they would recommend the SVMDC to others. Qualitative themes emerged regarding logistics, multidisciplinary care, key takeaways from clinic, and connection-making with other families. A multidisciplinary clinic demonstrated overall acceptability and perceived benefit to families of children with SVHD. Considerations for mixed experiences regarding financial commitment and connection-making among parents are discussed, as are the benefits of the synergy achieved through multidisciplinary care. |
| Databáze: | OpenAIRE |
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