Articles: caregivers.
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Palliative medicine · Jul 2024
Observational StudyThe cost of providing care by family and friends (informal care) in the last year of life: A population observational study.
Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. ⋯ We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.
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Palliative medicine · Jul 2024
Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: A qualitative study.
Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. ⋯ Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.
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Breast cancer patients experience treatment-related pain from surgery, radiation, chemotherapy, and long-term hormonal treatment, which can lead to poorer outcomes. Patient and family caregivers' psychosocial distress exacerbates patient pain interference, but this has not been directly examined among breast cancer patients in dyadic models longitudinally. Guided by a biopsychosocial framework, the Biobehavioral Family Model, we explore how multiple reports of patient pain interference across the first year of treatment are linked to the patient (N = 55) and caregiver (N = 55) pretreatment psychosocial distress (eg, depression, anxiety, marital satisfaction, family relationship quality). ⋯ Thus, caregivers' psychosocial distress (ie, anxiety and marital satisfaction) may be a particularly important target in future dyadic behavioral intervention strategies to reduce breast cancer patient pain. PERSPECTIVE: This article presents the link between breast cancer patients and family caregiver pretreatment psychosocial distress (anxiety, depression, marital satisfaction, and family quality) on patient pain interference during 1 year of breast cancer treatment. Findings suggest that caregiver anxiety and marital satisfaction may be important targets for future dyadic behavioral pain interventions.
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Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. ⋯ Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.
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Background & objectives To assess the pattern of non-compliance to childhood safety practices among parents of children between one and five yr of age and to determine the reasons behind the same. Methods A descriptive, cross-sectional study was conducted on 120 children between one and five yr of age through a questionnaire-based interview of the primary carer. Poor compliance was defined as compliance to <85 per cent of the recommended practices. ⋯ Parental perception of 'unnecessary' and 'lack of knowledge' were the main reasons behind non-compliance. Interpretation & conclusions Low compliance among families occurred with respect to safety on motor vehicles and avoidance of choking hazards. Change of parental perception and improved awareness is necessary for the prevention of unintentional childhood injuries.