Background: Guidelines recommend incorporation of caregiver burden assessment and list significant caregiver burden as a relative contraindication when considering left-ventricular assist device (LVAD) implantation.
Methods: To assess national practices regarding caregiver burden assessment, in 2019 we administered a 47-item survey to LVAD clinicians using 4 convenience samples.
Results: Responses were obtained from 191 registered nurses, 109 advance practice providers, 71 physicians, 59 social workers, and 40 others representing 132 LVAD programs; 125 of 173 total United States programs were included in the final analysis. While most programs (83.2%) assessed caregiver burden, assessment was most frequently conducted informally during social work evaluation (83.2%), with only 8.8% incorporating validated measures of caregiver burden. Larger programs were more likely to use a validated assessment measure (OR 6.68 [1.33-33.52]).
Conclusions: Future research should focus on how programs can standardize caregiver burden assessment and how the level of burden may impact patient and caregiver outcomes.
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http://dx.doi.org/10.1016/j.healun.2023.02.1501 | DOI Listing |
Epilepsia
January 2025
Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada.
We propose and prioritize important outcome domains that should be considered for future research investigating long-term outcomes (LTO) after new onset refractory status epilepticus (NORSE). The study was led by the international NORSE Institute LTO Working Group. First, literature describing the LTO of NORSE survivors was identified using a PubMed search and summarized to identify knowledge gaps.
View Article and Find Full Text PDFBMC Health Serv Res
January 2025
Indiana University School of Medicine, 410 W 10th St, Suite 2000A, Indianapolis, IN, 46202, USA.
Background: Individuals with Sickle Cell Disease (SCD) are a minoritized and marginalized community that have disparate health outcomes as a result of systemic racism and disease-related stigma. The purpose of this study was to determine the psychosocial risk factors for families caring for children with SCD at a pediatric SCD center through use of the Psychosocial Assessment Tool (PAT), a validated caregiver-report screener.
Methods: The PAT was administered annually during routine clinical visits and scored by the SCD Social Worker to provide tailored resources to families.
PLoS One
January 2025
Institute for Human Development, Aga Khan University, Nairobi, Kenya.
Introduction: Children growing up in arid and semi-arid regions of Sub-Saharan Africa (SSA) face heightened risks, often resulting in poor developmental outcomes. In Kenya, the arid and semi-arid lands (ASAL) exhibit the lowest health and developmental indicators among children. Despite these risks, some children grow up successfully and overcome the challenges.
View Article and Find Full Text PDFJ Pediatr Psychol
January 2025
Divison of Psychology & Behavioral Health, Children's National Hospital, Washington, DC, United States.
Objective: Caregiver perceived food allergy severity is associated with food allergy burden, while caregiver food allergy self-efficacy has been linked to improved quality of life for caregivers. This study examined the mediating effect of caregiver food allergy self-efficacy on the relationship between perceived food allergy severity and caregiver food allergy burden.
Methods: Caregivers of children diagnosed with IgE-mediated food allergy were recruited from pediatric allergy clinics to complete demographic and medical questionnaires, the Food Allergy Independent Measure-Parent Form, the Food Allergy Self-Efficacy Scale for Parents, and the Food Allergy Quality of Life-Parental Burden.
J Patient Exp
January 2025
Division of Health Science, Child Healthcare and Genetic Science Laboratory, Osaka University Graduate School of Medicine, Suita, Japan.
The challenges faced by patients with Krabbe disease remain unelucidated. This study aimed to identify these challenges and facilitate the development of methods for assessing the quality of life. This qualitative descriptive study used in-person or online semistructured interviews from March to December 2022 using a qualitative content analysis approach.
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