A selection from Barry Ashpole's latest edition of Literature Search. a listing of recent articles and reports on key issues in hospice and palliative care.
By Barry R. Ashpole
Communications consultant & IAHPC board member
Caregiver’s Quality of Life in Advanced Cancer: Validation of the construct in a real-life setting of early palliative care. Borelli E, Bigi S, Potenza L, et al. Frontiers in Oncology. Posted online September 14, 2023. DOI: 10.3389/fonc.2023.1213906
Reports from 137 primary caregivers in Italy were analyzed, and interviews with 23 caregivers conducted, to determine six dimensions, or themes, of caregiving. They are: living in the patient’s world, burden of illness and caregiving, assuming the caregiver role, renegotiating relationships, confronting mortality, and maintaining resilience. The authors state that this study could be the groundwork for the development of a dedicated questionnaire.
"What If I Die Before Him?” Concerns of caregivers in palliative care. Tuz, C, Özçakir A. Journal of Contemporary Medicine 2023; 13(5): 982-986. DOI: 10.16899/jcm.1345365
This Turkish study involved five caregivers of spouses with varying diagnoses, who provided care for months or years. Four themes were identified: concerns about themselves; overestimating their health care problems, anxiety about staying strong; consequences of the patient; remembering the patient as a “hero.” Subthemes were also identified, including acceptance of the situation, challenges about caregiving, making sacrifices, excessive responsibility, embarrassment about diaper care, initial lack of knowledge about caregiving, coping strategies, divine providence, and religious beliefs.
The Caregiver’s Perspective on End-of-Life Inpatient Palliative Care: A qualitative study. Herrera-Abián M, Castaneda-Vosmediano R, Antón-Rodriguez C, et al. Annals of Medicine 2023; 55(2): 2260400. DOI: 10.1080/07853890.2023.2260400
In this study from Spain, interviews with 24 family caregivers of terminally ill patients and researchers' field notes informed a thematic inductive analysis. "Two main themes were identified: caregivers’ perception of scientific and technical appropriateness of care, and perception of person-centred care… Caregivers of patients admitted to a PCU unit described their experience of end-of-life care as positive, while their non-PCU unit counterparts described largely negative experiences."
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