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Background: The death of a child is profoundly distressing for parents, often leading to acute grief and psychological complications. Most bereavement research is from high-income countries, with limited generalisability to low- and middle-income contexts where 98 % of newborn deaths occur. We explore the experiences of parents in Uganda following the death of their baby.
Methods: Qualitative interviews were conducted with 11 bereaved parents whose newborn participated in the OMWaNA trial and died while enrolled or shortly thereafter. In-depth interviews explored the experience of bereavement, the psychosocial impact, and economic consequences. Data were analysed using a deductive thematic approach.
Results: The death of a baby was consistently associated with parental stress, information delays, and uncertainty regarding the cause of death. While respondents reported a period of acute grief, many relied on their faith and social support to cope. Expectations for bereavement care from health professionals were low and instead parents focused on health professionals' efforts to keep their baby alive and advice regarding future pregnancies. Despite financial precarity, costs and loss of income, many parents appeared comforted that they had done all they could to ensure the baby's survival.
Conclusion: These findings illustrate the importance of understanding parental bereavement in different settings and circumstances. Rather than health worker-led models of active bereavement care, respondents relied on social support, their faith, and a focus on future pregnancies to 'become strong.' Further research to understand the longer-term impact of bereavement, men's experiences and coping strategies could inform more contextually appropriate bereavement care.
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http://dx.doi.org/10.1016/j.wombi.2025.101890 | DOI Listing |
J Palliat Med
September 2025
Middle East Cancer Consortium, Haifa, Israel.
Despite a plethora of evidence available on the benefits of palliative care (PC), it is estimated that only about 14% of those living in low- to middle-income countries (LMIC) or developing countries have access to PC. To globally examine PC expert perspectives regarding PC infrastructure and resources within each country, drug and opioid availability to provide PC, and workforce and educational issues. Descriptive, open-ended survey seeking first-hand qualitative perspectives.
View Article and Find Full Text PDFJ Am Geriatr Soc
September 2025
Division of Geriatrics and Palliative Medicine, Department of Medicine, Weill Cornell Medicine, New York, New York, USA.
Background: Palliative care needs are prevalent among nursing home (NH) residents. However, access to and integration of palliative care services remain limited. NHs often rely on a workforce with varying levels of training and exposure to palliative care, which may influence care quality and consistency.
View Article and Find Full Text PDFPalliat Med
September 2025
Centre for Research in Social Policy, Loughborough University, Loughborough, UK.
Background: Improving support for unpaid carers is a policy priority internationally, yet there are few reliable population estimates on numbers of end of life carers, and little is known about the demographic characteristics of this group.
Aim: (1) Estimate the number of unpaid end of life carers in the UK; (2) Describe demographic characteristics of this group.
Design: An observational study using data from the UK Household Longitudinal Survey (Understanding Society), Health Survey for England and the Office for National Statistics to estimate the number of end of life carers in the UK.
Home Healthc Now
September 2025
Michelle S. Harris, DNP, FNP-C, RN, CWOCN, is the Director of Clinical Practice, Sutter Care at Home, Sutter Health, Roseville, California.
Sutter Care at Home (SCAH), part of the not-for-profit Sutter Health integrated system, serves Northern California's Valley and Bay Areas through 14 licensed home health and nine hospice agencies, many of which reach rural communities. Like many home health organizations, SCAH has faced a persistent registered nurse (RN) shortage, challenging its ability to maintain care delivery standards. In response, executive leadership launched a 12-month Registered Nurse New Graduate Residency Program to recruit and support newly graduated RNs.
View Article and Find Full Text PDFNutr Clin Pract
September 2025
Department of Pediatrics, Mayo Clinic, Rochester, Minnesota, USA.
Home parenteral nutrition (HPN) is a life-sustaining therapy traditionally used as a bridge to enteral autonomy or intestinal transplantation. Increasingly, it is used for intractable feeding intolerance (IFI), which can occur near the end of life (EOL) in children with severe neurological impairment (SNI). In these cases, HPN use differs from its historical role and requires tailored outpatient planning.
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