Respiratory and Sleep Medicine Department, St Vincent's Hospital Melbourne, 41 Victoria Parade, Fitzroy, Vic. 3065, Australia; and Palliative Care Department, St Vincent's Hospital Melbourne, 41 Victoria Parade, Fitzroy, Vic. 3065, Australia.
Respiratory and Sleep Medicine Department, St Vincent's Hospital Melbourne, 41 Victoria Parade, Fitzroy, Vic. 3065, Australia.
Aust Health Rev. 2023 Aug;47(4):463-471. doi: 10.1071/AH23076.
Objectives Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective. Methods We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis. Results Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care - the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals - who spoke of 'growing this plan together'; the delivery of person-centred care - where physicians 'actually listen and you are not treated like a number'; the reality of action plan use in serious illness - while many found plans 'certainly' do help, others described when they were simply 'too ill to do the action plan'; and finally, divergent preferences for discussions about future care - while some patients felt this subject was 'better left alone', caregivers consistently reported their preference was to 'make a plan.' Conclusion Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential diverging preferences of the patient and caregiver when discussing future care.
目的 为晚期肺部疾病患者提供综合呼吸与姑息治疗服务，在提供以疾病为导向的治疗直至生命末期的同时，还能管理症状并讨论未来的治疗方案。本研究旨在探讨患者、照护者和全科医生对综合呼吸与姑息治疗服务的看法，以了解服务的哪些部分被认为是有价值和有效的。
方法 我们邀请患者、照护者和全科医生参与半结构式电话访谈。采用扎根理论方法指导数据收集和定性分析。
结果 2019 年 7 月至 12 月期间，10 名患者、8 名照护者和 5 名全科医生完成了访谈。主要主题是重视综合护理——提供以疾病为导向的治疗和姑息治疗。还出现了另外四个主要主题：重视患者、照护者和医疗保健专业人员之间的沟通和互动——他们谈到了“共同制定这个计划”；提供以患者为中心的护理——医生“真正倾听，你不会被当作一个数字对待”；在严重疾病中行动计划的实际应用——虽然许多人认为计划“肯定”有帮助，但也有人描述了他们“病得太重，无法执行行动计划”；最后，对未来治疗方案讨论的偏好存在差异——虽然一些患者认为这个话题“最好不要讨论”，但照护者一直表示他们更倾向于“制定一个计划”。
结论 患者的观点强调该服务的价值在于提供具有高沟通标准的个性化护理。类似的服务应该认识到行动计划在晚期肺部疾病中的有用性和局限性，并在讨论未来护理时，对患者和照护者潜在的不同偏好保持敏感。
