In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews. Thirty-three long-distance family caregivers participated in the study (December 2021-October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers' recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.
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http://dx.doi.org/10.1177/00302228241243110 | DOI Listing |
BMJ Open
November 2024
Department of Public Health, School of Medicine and Health Sciences, Tima-ade University, Gabiley, Somaliland.
Objective: To explore the barriers and facilitators of antenatal care (ANC) utilisation in Somaliland.
Design: An exploratory qualitative study design.
Setting: Various settings were considered for study including maternal and child health clinics, hospitals and community.
J Pain Symptom Manage
January 2025
Carl-Neuberg-Strasse 1(F.A.H., N.S., S.S.), Institute for General Practice and Palliative Care, Hannover Medical School, Hannover, Germany.
Context: The provision of appropriate psychosocial support has a significant impact on quality of life for informal caregivers of terminally ill patients. Long-distance caregivers have specific wishes and needs for psychosocial support.
Objectives: To date, no formal support measures for long-distance caregivers of terminally ill patients have been developed in Germany.
Aust J Rural Health
October 2024
Faculty of Medical & Health Sciences, University of Auckland, Auckland, New Zealand.
Objective: Rural unpaid caregivers experience different opportunities and challenges than their urban counterparts. Our aim was to understand rural unpaid caregivers' experiences of challenges and opportunities during the Covid-19 pandemic in New Zealand.
Setting: Rural northern New Zealand during the Covid-19 pandemic.
Eur J Hum Genet
September 2024
Division of Genetics and Genomic Medicine, Edward Mallinckrodt Department of Pediatrics, Washington University School of Medicine and St. Louis Children's Hospital, St. Louis, MO, 63110, USA.
Using a new analytic method ("unique non-overlapping region" (UNOR) analysis), we characterized the genotypes and phenotypes of a large cohort of individuals diagnosed with chromosome 9p deletion syndrome (9PMS) and defined critical genomic regions. We extracted phenotypic information from 48 individuals with 9PMS from medical records and used a guided interview with caregivers to clarify ambiguities. Using high-resolution whole-genome sequencing for breakpoint definition, we aligned deletions and drew virtual breakpoints to obtain UNORs associated with phenotypic characteristics.
View Article and Find Full Text PDFBMC Geriatr
June 2024
Department of Neurobiology, Care Sciences and Society, Division of Nursing, NVS, Karolinska Institutet Alfred Nobels Allé, 23 141 83 Huddinge, Stockholm, Sweden.
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