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Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types—Manager, Carrier, Partner, Lone—each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes.
This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains.
Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life.
Significance of results:
This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types.
Assessment of health-related quality of life (HRQOL) at end of life (EOL) can be quite challenging. However, understanding how treatment affects HRQOL during the terminal phases of care is critical to providing the quality of cancer care called for by the National Cancer Policy Board (NCPB) of the Institute of Medicine. The stage at diagnosis, disease progression, and personal and social factors make cancer care at the end of life extraordinarily complex. Inevitably, as one approaches death, symptoms are dynamic and change in an unpredictable fashion, requiring rapid modifications in medications and other therapies. At this time, assessment of HRQOL, as well as patient management, are formidable tasks.
In studying terminally ill populations, it is important to articulate what is meant by palliative and “end of life” care. The World Health Organization (WHO) defines palliative care as the “active total care of patients whose disease is not responsive to curative treatments.” The NCPB has adopted the WHO definition of palliative care, but it also notes that palliative care should begin at the time of cancer diagnosis and extend through the course of the disease to the time of death. While palliative care and EOL care are often seen as equivalent, some make the distinction that EOL care is focused only on the terminal stage, whereas palliative care may extend throughout the disease trajectory. For purposes of this paper, palliative care and EOL care will be used interchangeably, per the WHO definition.
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