Unlabelled: Families of critically ill patients consistently rate visiting and being near their relative as very important. However, the costs incurred by families whilst visiting have received little attention. This study investigated the personal costs to informal caregivers (families, relatives and friends) visiting critically ill patients in an intensive care unit (ICU). The purpose of the study was (1) to test the feasibility of collecting data from informal caregivers visiting critically ill relatives and (2) to estimate the personal costs incurred by them. Data were collected by self-completed questionnaires over a 2-week period on out-of-pocket expenses and time foregone.
Results: One hundred and seven informal caregivers were invited to participate in the study. Fifty-four completed the questionnaire (response 50%). Forty-eight percent of respondents were male and 52% female. Fifty-nine percent of participants were in paid employment, and of these 16% lost wages as a result of the visit. The mean cost of time foregone was 46.21 pounds sterlings /visit (66.92 US dollars) and mean out-of-pocket expenses 29.30 pounds sterlings (42.43 US dollars).
Conclusion: It is feasible to collect data on expenses and time foregone from informal caregivers visiting the ICU. The main out-of-pocket expense was that related to travel. More empirical work is needed across different settings to obtain more generalisable estimates of out-of-pocket expenses and time foregone.
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http://dx.doi.org/10.1016/j.iccn.2005.10.004 | DOI Listing |
BMC 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.
BMC Health Serv Res
January 2025
Department of Paediatrics, Children's National Hospital, Washington DC, USA.
Background: Caregiver concern is the main driver to paediatric emergency departments visits. Understanding caregiver worries is crucial to guide patients to the most appropriate healthcare setting. Previous research shows mixed findings on the accordance between caregiver assessment and professional triage.
View Article and Find Full Text PDFBMC Pediatr
January 2025
Department of Pediatrics, Seoul Metropolitan Government-Seoul National University Boramae Medical Center, Seoul, 07061, Korea.
Background: The Korean government implemented mandatory hospital isolation in the early phase of the COVID-19 pandemic. This study investigated the mental health of children and caregivers who underwent mandatory hospital isolation due to COVID-19.
Methods: This prospective study examined the physical condition and mental health of children under 7 years of age with COVID-19 and the mental health of their caregivers who underwent isolation in negative pressure rooms at two hospitals in Korea from April to September 2021.
Pediatr Res
January 2025
Department of Physiology, University of Helsinki, Helsinki, Finland.
Background: To study how early gross motor development links to concurrent prelinguistic and social development.
Methods: We recruited a population-based longitudinal sample of 107 infants between 6 and 21 months of age. Gross motor performance was quantified using novel wearable technology for at-home recordings of infants' spontaneous activity.
Clin Ther
January 2025
Acadia Pharmaceuticals, Inc., San Diego, California. Electronic address:
Purpose: Rett syndrome (RTT) is a rare neurodevelopmental disorder that mainly affects girls and women. Trofinetide is approved for the treatment of RTT in adults and children aged ≥2 years. To gain insight into experiences with RTT and effects of trofinetide treatment at different stages of RTT, interviews with caregivers of individuals with RTT were conducted upon their exit from the open-label trofinetide trials.
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