Journal of social work in end-of-life & palliative care
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J Soc Work End Life Palliat Care · Jan 2013
Living in liminality--being simultaneously visible and invisible: caregivers' narratives of palliative care.
Palliative care is an integral part of care and takes place in many settings--including the home, special accommodations, and hospitals. However, research shows that palliative care often ends with a death in the hospital due to the heavy burden on the primary caregiver. This study explores the meaning of being the primary caregiver of a close one who is terminally ill and is based on qualitative interviews with six primary caregivers of a terminally ill individual at home. ⋯ This is particularly important concerning bodily care and the medical treatment regimen. In addition, when friends and relatives are absent, there is an ethical demand on professional caregivers to compensate for this lack and to compensate for this need. Palliative home care demands care that is person-centered--including the individual's history, family and loved ones, and individual strengths and weaknesses.
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J Soc Work End Life Palliat Care · Jan 2013
Professional and educational needs of hospice and palliative care social workers.
In the past decade much growth has occurred in the numbers of patients and families served by hospices and palliative care services. Thus, not surprisingly, these services have also been subject to increasing regulation by governmental and accrediting entities. In order to stay up-to-date in this ever-changing environment and to continue to provide effective interventions, social workers must stay engaged in the professional community and continuing education. ⋯ Most were members of professional organizations and three-quarters were members of NASW. Although many were aware of the joint NASW-NHPCO social work hospice specialty certification, few held this certification yet. The results of this survey can be utilized in the design of continuing education programs and advocacy for programmatic and policy change within agencies and the industry.
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J Soc Work End Life Palliat Care · Jan 2013
Social workers' roles in addressing the complex end-of-life care needs of elders with advanced chronic disease.
This study examined social workers' roles in caring for low-income elders with advanced chronic disease in an innovative, community-based managed care program, from the perspective of elders, family, team members, and social workers. The results are drawn from a larger longitudinal, multimethod case study. Sources of data include survey reports of needs addressed by social workers for 120 deceased elders, five focus groups with interdisciplinary team members, and in-depth interviews with 14 elders and 10 of their family caregivers. ⋯ Distinctive perceptions of social workers' roles were identified for the different stakeholder groups (i.e., elders, family caregivers, team members, and social workers). Findings from this study may inform supervisors and educators regarding training needs of those preparing to enter the rapidly growing workforce of gerontological social workers who may be called upon to care for elders at the end of life. Training is particularly warranted to help social workers gain the skills needed to more successfully treat symptom management, depression, anxiety, agitation, grief, funeral planning, and spiritual needs that are common to the end of life.
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J Soc Work End Life Palliat Care · Jan 2013
Psychosocial care for the caregivers of primary malignant brain tumor patients.
Despite clinical experience that suggests a high burden of care among relatives of individuals with a primary malignant brain tumor (PMBT), little is known about their actual needs. In this study, the caregivers' personal experiences, quality of life, burden of care, and psychological well-being were examined. ⋯ The caregiver's quality of life was most strongly affected by the burden of care (p < .001) and the patient's mental state (p < .03). To improve the situation, empathetic professionals and an early implementation of palliative care and social work are required.
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The purpose of this article is to provide recent findings on the perceptions and experiences about end-of-life care for individuals with a hematological malignancy. A qualitative design based on a series of open-ended interviews and one focus group was utilized to explore and document the experience of survivorship from the perspective of adult patients diagnosed with a hematological malignancy. Fifty participants (n = 26 male; n = 24 female) were interviewed representing the major hematological diagnostic groups: Multiple Myeloma, Lymphoma, and Leukemia. ⋯ The findings indicated that those fortunate enough to know about the benefits of palliative care are more likely to access palliative care during end-of-life care. However, for many hematology patients there are still problems with timely referrals to the palliative system. Within the context of an Australian research program, the findings provide a useful "snapshot" of current issues for Australian hematology patients and their families.