Navigating the Transition from Advanced Illness to Bereavement: How Provider Communication Informs Family-related Roles and Needs.
Jacqueline M McGinleyDeborah P WaldropPublished in: Journal of social work in end-of-life & palliative care (2020)
Person-centered, family-oriented services are integral to palliative and end-of-life care. Effective communication with providers informs the quality of the dying experience for patients and how families fare in bereavement. This paper reports findings from a study exploring how communication and care in the later stages of an advanced illness influence family caregivers' well-being in bereavement. A concurrent triangulation design was used to analyze data collected during semi-structured interviews with 108 recently bereaved caregivers from a single hospice agency in Western New York. Findings from this study suggest that family caregivers assume the role of interpreter and advocate while engaged in both formal and informal communication with health care providers at the end of care-recipients' lives. Findings also suggest that families are more likely to feel emotionally prepared for loss and grief when health care providers are available to communicate in a concise, consistent, and compassionate manner. The results illuminate the important connection between communication during the transition from late-stage illness to end-of-life care and preparation for bereavement. The paper concludes with a discussion of how findings from this study align with recent concerted efforts to establish standards and competencies for social work education and practice in palliative care.
Keyphrases
- palliative care
- healthcare
- advanced cancer
- quality improvement
- primary care
- end stage renal disease
- chronic kidney disease
- newly diagnosed
- affordable care act
- public health
- deep learning
- emergency department
- radiation therapy
- squamous cell carcinoma
- social media
- machine learning
- mass spectrometry
- peritoneal dialysis
- big data
- health information
- health insurance
- artificial intelligence