Articles: caregivers.
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Palliative medicine · May 2023
The experiences of family members witnessing the diminishing drinking of a dying relative in hospital: A narrative inquiry.
The optimal management of diminishing drinking at the end of life is contentious. Clinicians and family members may understand the phenomenon differently and hold divergent priorities regarding care. Family members can be distressed by diminishing drinking and its management, particularly when in a hospital environment. ⋯ There is potential to improve family members' experiences through re-conceptualisation of diminishing drinking aligned to their experiences, supporting family members by listening to their experiences with insight and strengthening their agency within the management of their relatives with diminishing drinking.
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Despite substantial antiretroviral therapy (ART) coverage in other groups with the human immunodeficiency virus (HIV) in Tanzania, there is a progressive decline in ART enrollment among HIV-infected children. This study aimed to determine the factors affecting the enrollment of children with HIV in ART and to identify an effective, sustainable intervention to address children's ART care enrollment. To achieve this, we conducted a cross-sectional study using a mixed-method sequential explanatory design, including children with HIV aged 2 to 14 years in the Simiyu region. ⋯ In qualitative analyses, 36 respondents reported that stigma, distance, and lack of HIV-positive status disclosure to their fathers were causes for low enrollment in ART. Overall, this study demonstrated that a caregiver's income, distance to obtain HIV care services, HIV-positive status non-disclosure to the father, and fear of stigma played a significant role in children's enrollment in HIV care. As such, HIV/acquired immunodeficiency syndrome programs would benefit from having intensive interventions to address distance, such as scaling up care and treatment centers, as well as techniques to reduce stigma in the population.
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Despite providing frequent care to heart failure (HF) patients, home health care workers (HHWs) are generally considered neither part of the health care team nor the family, and their clinical observations are often overlooked. To better understand this workforce's involvement in care, we quantified HHWs' scope of interactions with clinicians, health systems, and family caregivers. ⋯ HHWs' scope of health-related interactions is large, indicating that there may be novel opportunities to leverage HHWs' experiences to improve health care delivery and patient care in HF.
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Palliative medicine · Apr 2023
Bureaucracy and burden: An Intersectionality-Based Policy Analysis of social welfare policy with consequences for carers of people with life-limiting illness.
For informal carers of people with life-limiting illness, social welfare policy related to income support and housing has been associated with varied psychosocial issues, yet remains relatively under-explored. An intersectional approach offers potential to illuminate diverse experiences and implications. ⋯ This intersectional analysis establishes critical exploration of the framing and consequences of welfare policy for carers of people with life-limiting illness, presented in a novel conceptual model. Implications relate to intersectoral development of structural competency, responsiveness to structurally vulnerable carers in clinical practice, and needed policy changes.