Kayser Karen, DeMarco Rosanna F, Stokes Charu, DeSanto-Madeya Susan, Higgins Philip C
Graduate School of Social Work,Boston College,Boston,Massachusetts.
Connell School of Nursing,Boston College,Boston,Massachusetts.
Palliat Support Care. 2014 Oct;12(5):369-78. doi: 10.1017/S1478951513000230. Epub 2013 Oct 24.
Social and economic barriers can hinder access to quality palliative and end-of-life care for patients living in inner-city communities. Using a community-based participatory research (CBPR) approach, we investigated the stresses associated with living with a chronic disease and barriers to access and utilization of palliative care resources experienced by low-income patients and caregivers in five inner-city communities.
Four focus groups (N = 33) were conducted with community stakeholders, including healthcare professionals (social workers and nurses), persons living with chronic illnesses (e.g., HIV/AIDS, cardiovascular disease, and cancer), and caregivers. Focus group responses were analyzed using thematic analyses.
Patients' and caregivers' stresses centered around five themes: lack of family support, communication barriers with healthcare professionals, minority stress, caregiver burden, and lack of spiritual support. The community stakeholders identified resources and services to improve access to care and the quality of life of underserved, low-income populations living with chronic illnesses.
A CBPR approach enabled us to develop an interdisciplinary and culturally sensitive intervention to begin addressing the palliative and end-of-life needs of the patients and caregivers of the inner-city community.
社会和经济障碍可能会阻碍内城区社区患者获得优质的姑息治疗和临终关怀。我们采用基于社区的参与性研究（CBPR）方法，调查了五个内城区社区中低收入患者及其照顾者在患有慢性病生活过程中所面临的压力，以及在获取和利用姑息治疗资源方面存在的障碍。
与社区利益相关者开展了四个焦点小组讨论（N = 33），这些利益相关者包括医疗保健专业人员（社会工作者和护士）、慢性病患者（如艾滋病毒/艾滋病、心血管疾病和癌症患者）以及照顾者。使用主题分析法对焦点小组的反馈进行分析。
患者及其照顾者的压力集中在五个主题上：缺乏家庭支持、与医疗保健专业人员的沟通障碍、少数群体压力、照顾者负担以及缺乏精神支持。社区利益相关者确定了有助于改善医疗服务可及性以及改善患有慢性病的低收入弱势群体生活质量的资源和服务。
CBPR方法使我们能够制定一种跨学科且具有文化敏感性的干预措施，以开始满足内城区社区患者及其照顾者的姑息治疗和临终需求。
