Jessica Madiraca, Kathleen Lindell, Shannon Phillips, Patrick Coyne, Sarah Miller
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引用次数: 0
Abstract
Individuals with chronic obstructive pulmonary disease (COPD) experience high symptom burden, severe illness, and frequent deterioration in quality of life. Women with COPD represent a unique population with potential unmet care needs yet remain underrepresented in palliative care (PC) literature. The purpose of this study was to investigate specific needs of women with COPD, learn how COPD symptoms impact women, and explore factors related to PC knowledge, access, and barriers. A total of 30 individuals were enrolled in this prospective, single-arm multimethod study, using an adapted Maslow's hierarchy of needs framework. Fifteen participated in semistructured interviews. Women with advanced COPD identified care needs and barriers including access to medications/oxygen and resources (pulmonary rehabilitation/support groups), information about disease/treatment, and effect of weather conditions on symptoms. Some participants were not under the direct care of a pulmonologist but recognized the importance of their services. None of the participants had been referred to or received PC. This study provides evidence that women have unmet care needs, high symptom burden, and disease uncertainty. Women with COPD should have the opportunity to have the supportive care that PC offers. Palliative care and hospice nurses have opportunities to address unmet care needs, increased symptom burden, and disease uncertainty.
慢性阻塞性肺病(COPD)患者的症状负担重、病情严重、生活质量经常恶化。女性慢性阻塞性肺病患者是一个独特的群体,她们的潜在护理需求尚未得到满足,但在姑息关怀(PC)文献中的代表性仍然不足。本研究旨在调查慢性阻塞性肺疾病女性患者的特殊需求,了解慢性阻塞性肺疾病症状对女性患者的影响,并探讨与姑息治疗知识、获取途径和障碍相关的因素。这项前瞻性、单臂多方法研究共招募了 30 人,采用的是经改编的马斯洛需求层次理论框架。其中 15 人参加了半结构化访谈。患有晚期慢性阻塞性肺病的女性确定了护理需求和障碍,包括获得药物/氧气和资源(肺康复/支持小组)、疾病/治疗信息以及天气条件对症状的影响。一些参与者并不直接接受肺科医生的治疗,但他们认识到肺科医生服务的重要性。所有参与者均未转诊或接受 PC 治疗。本研究提供的证据表明,女性患者的护理需求未得到满足、症状负担较重以及疾病的不确定性。患有慢性阻塞性肺病的女性患者应该有机会获得 PC 所提供的支持性护理。姑息关怀和安宁疗护护士有机会解决护理需求未得到满足、症状负担加重和疾病不确定性等问题。
期刊介绍:
Journal of Hospice & Palliative Nursing (JHPN) is the official journal of the Hospice & Palliative Nurses Association and is the professional, peer-reviewed journal for nurses in hospice and palliative care settings. Focusing on the clinical, educational and research aspects of care, JHPN offers current and reliable information on end of life nursing.
Feature articles in areas such as symptom management, ethics, and futility of care address holistic care across the continuum. Book and article reviews, clinical updates and case studies create a journal that meets the didactic and practical needs of the nurse caring for patients with serious illnesses in advanced stages.