title: An Ecological Understanding of Caregiver Experiences in Palliative Care.
abstract: Palliative care is specialized health care to improve quality of life for patients with serious illness and their families through prevention and relief of suffering. A Palliative Care Institute was held in western Washington to capture community voices about diverse needs, strengths, and opportunities for improvement of palliative care. Researchers employed qualitative methods to obtain thematic data, provide real-time analysis, and engage in a multivoting technique to reflect stakeholder interest in individual themes and prioritize larger group interests. Bronfenbrenner's ecological systems framework was used to explore caregiver experiences. Within the microsystem, caregivers reported difficulties in interactions with medical providers as a key challenge. Within the mesosysytem, interactions between patients and medical providers and the impact on caregivers were explored. Within the exosystem, caregivers reported lack of control over the schedules of personal care staff. Macrosystem influences included impact of local culture on the development of palliative care services. Chronosystem influences include de-medicalization of childbirth and its impact on perceptions of palliative care. Implications include the need for social workers to be proactive in fostering trust and effective communication between care providers and caregivers, and the demand for health care provider training in communication with patients and families.
authors.affiliation: a Health & Community Studies , Western Washington University , Bellingham , Washington , USA.
authors.forename: Devyani
authors.initials: D
authors.lastname: Chandran
authors.affiliation: a Health & Community Studies , Western Washington University , Bellingham , Washington , USA.
authors.forename: J Hope
authors.initials: JH
authors.lastname: Corbin
authors.affiliation: b School of Nursing , University of Portland , Portland , Oregon , USA.
authors.forename: Casey
authors.initials: C
authors.lastname: Shillam
mesh_terms: D032722:Advance Care Planning; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D006301:Health Services Needs and Demand / Q000458:organization & administration; D006801:Humans; D010166:Palliative Care / Q000458:organization & administration* / Q000523:psychology* / Q000592:standards; D057766:Policy; D011369:Professional-Patient Relations; D036301:Qualitative Research; D058996:Quality Improvement / Q000458:organization & administration; D011788:Quality of Life; D012067:Religion; D012944:Social Support; D035502:Trust
keywords: Caregiver; caregiving; community; family caregiver; palliative care