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1.
BMC Palliat Care ; 21(1): 26, 2022 Feb 28.
Artículo en Inglés | MEDLINE | ID: mdl-35227242

RESUMEN

BACKGROUND: Respite care provides caregiving support to people with amyotrophic lateral sclerosis (ALS) and their care partners by providing the care partner with temporary relief from their caregiving duties. The aim of this study was to explore the impact of respite care through the perspectives and lived experiences of people with ALS and their care partners. METHODS: Thirty-one dyads (62 participants) of people with ALS and their care partners were assigned to either the control group or the respite care intervention. Respite care was provided in the form of home-based services. Semi-structured interviews were conducted with participants at baseline and after a six-month period to gather perspectives on ALS caregiving, perceptions of respite care, and the respite care experience. Interviews were transcribed and subjected to thematic analysis. RESULTS: Caregiving challenges specific to the care partner and the patient-care partnership relationship were identified. Overall, people with ALS and care partners responded positively to in-home respite care and reported improved relationship quality, more time for the care partner to pursue personal commitments or take a break, and improved emotional well-being for both the person with ALS and the care partner. Barriers and concerns were raised surrounding privacy and staff consistency. CONCLUSION: This study highlights respite care as a critical tool to alleviate caregiving challenges and support the needs of people with ALS and their care partners. Engagement with the ALS community and formal evaluations of respite care services should be prioritized in order to minimize barriers and best meet the needs of people with ALS and their care partners.


Asunto(s)
Esclerosis Amiotrófica Lateral , Cuidados Intermitentes , Esclerosis Amiotrófica Lateral/psicología , Esclerosis Amiotrófica Lateral/terapia , Cuidadores/psicología , Emociones , Humanos , Investigación Cualitativa
2.
Sci Rep ; 7(1): 9463, 2017 08 31.
Artículo en Inglés | MEDLINE | ID: mdl-28860521

RESUMEN

As exposure to coastal hazards increases there is growing interest in nature-based solutions for risk reduction. This study uses high-resolution flood and loss models to quantify the impacts of coastal wetlands in the northeastern USA on (i) regional flood damages by Hurricane Sandy and (ii) local annual flood losses in Barnegat Bay in Ocean County, New Jersey. Using an extensive database of property exposure, the regional study shows that wetlands avoided $625 Million in direct flood damages during Hurricane Sandy. The local study combines these models with a database of synthetic storms in Ocean County and estimates a 16% average reduction in annual flood losses by salt marshes with higher reductions at lower elevations. Together, the studies quantify the risk reduction ecosystem services of marsh wetlands. Measuring these benefits in collaboration with the risk modelling industry is crucial for assessing risk accurately and, where appropriate, aligning conservation and risk reduction goals.

3.
J Neonatal Surg ; 5(4): 59, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-27896167

RESUMEN

Anorectal malformations (ARMs) commonly co-occur with other congenital anomalies, particularly VACTERL (vertebral, anorectal, cardiac, tracheal, esophageal, renal, limb, and duodenal) associations. However, this collection of associations is not comprehensive, and other concurrent anomalies may exist that can be missed during the standard work-up of patients with ARMs. We present a rare case of a neonate with a low ARM with concurrent jejuno-ileal atresia that was diagnosed after the correction of the ARM when the patient developed segmental volvulus. This case illustrates the importance of having a high index of suspicion when deviation from a classic presentation occurs.

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