Farquhar Morag, Penfold Clarissa, Benson John, Lovick Roberta, Mahadeva Ravi, Howson Sophie, Burkin Julie, Booth Sara, Gilligan David, Todd Christopher, Ewing Gail
School of Health Sciences, University of East Anglia, Norwich, United Kingdom.
Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom.
PLoS One. 2017 May 5;12(5):e0177081. doi: 10.1371/journal.pone.0177081. eCollection 2017.
Breathlessness is a common symptom of advanced disease placing a huge burden on patients, health systems and informal carers (families and friends providing daily help and support). It causes distress and isolation. Carers provide complex personal, practical and emotional support yet often feel ill-prepared to care. They lack knowledge and confidence in their caring role. The need to educate carers and families about breathlessness is established, yet we lack robustly developed carer-targeted educational interventions to meet their needs.
We conducted a qualitative interview study with twenty five purposively-sampled patient-carer dyads living with breathlessness in advanced disease (half living with advanced cancer and half with advanced chronic obstructive pulmonary disease (COPD). We sought to identify carers' educational needs (including what they wanted to learn about) and explore differences by diagnostic group in order to inform an educational intervention for carers of patients with breathlessness in advanced disease.
There was a strong desire among carers for an educational intervention on breathlessness. Six key topics emerged as salient for them: 1) understanding breathlessness, 2) managing anxiety, panic and breathlessness, 3) managing infections, 4) keeping active, 5) living positively and 6) knowing what to expect in the future. A cross-cutting theme was relationship management: there were tensions within dyads resulting from mismatched expectations related to most topics. Carers felt that knowledge-gains would not only help them to support the patient better, but also help them to manage their own frustrations, anxieties, and quality of life. Different drivers for education need were identified by diagnostic group, possibly related to differences in caring role duration and resulting impacts.
Meeting the educational needs of carers requires robustly developed and evaluated interventions. This study provides the evidence-base for the content of an educational intervention for carers of patients with breathlessness in advanced disease.
呼吸困难是晚期疾病的常见症状，给患者、医疗系统和非正式护理人员（提供日常帮助和支持的家人及朋友）带来巨大负担。它会导致痛苦和孤立感。护理人员提供复杂的个人、实际和情感支持，但往往觉得自己在护理方面准备不足。他们在护理角色方面缺乏知识和信心。向护理人员和家属开展关于呼吸困难的教育的必要性已得到确认，但我们缺乏针对护理人员需求的完善的教育干预措施。
我们对25对有目的地抽样选取的晚期疾病呼吸困难患者-护理人员二元组进行了定性访谈研究（其中一半患有晚期癌症，另一半患有晚期慢性阻塞性肺疾病（COPD））。我们试图确定护理人员的教育需求（包括他们想了解的内容），并按诊断组探讨差异，以便为晚期疾病呼吸困难患者的护理人员制定教育干预措施提供依据。
护理人员强烈希望获得关于呼吸困难的教育干预。六个关键主题对他们来说很突出：1）了解呼吸困难，2）应对焦虑、恐慌和呼吸困难，3）管理感染，4）保持活动，5）积极生活，6）了解未来预期。一个贯穿各主题的共同主题是关系管理：由于在大多数主题上期望不匹配，二元组内部存在紧张关系。护理人员认为，知识的增加不仅有助于他们更好地支持患者，还能帮助他们应对自己的挫折、焦虑和改善生活质量。按诊断组确定了不同的教育需求驱动因素，这可能与护理角色持续时间及其产生的影响差异有关。
满足护理人员的教育需求需要完善且经过评估的干预措施。本研究为晚期疾病呼吸困难患者的护理人员教育干预内容提供了证据基础。
