Seipp Hannah, Haasenritter Jörg, Hach Michaela, Becker Dorothée, Ulrich Lisa-R, Schütze Dania, Engler Jennifer, Michel Cathrin, Bösner Stefan, Kuss Katrin
Department of General Practice and Family Medicine, Philipps-University of Marburg, Marburg, Hessen, Germany.
Professional Association of Specialised Palliative Homecare in Hesse, Wiesbaden, Germany.
Palliat Med. 2021 Dec;35(10):1844-1855. doi: 10.1177/02692163211026516. Epub 2021 Jun 25.
Specialised palliative home-care supports patients with life-limiting diseases in their familiar surroundings. The number of palliative care teams and patients being cared for is increasing worldwide. To assess and improve quality, it is needed to understand, how specialised palliative home-care can be provided successfully. For this purpose we examined the views of all involved stakeholders.
To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care.
We used a qualitative design based on participant observations, interviews and focus groups following the principles of a Grounded Theory approach.
SETTING/PARTICIPANTS: All specialised palliative home-care teams ( = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations ( = 5), and interviewed patients ( = 14), relatives ( = 14) and health professionals working in or collaborating with specialised palliative home-care ( = 30). We also conducted focus groups ( = 4) with health professionals including a member check.
Successful specialised palliative home-care needs to treat complex symptoms, and provide comprehensive care including organisation of care, involving relatives and addressing issues of death and dying. Sense of security for patients and relatives is key to enable care at home. Care delivery preferences include a focus on the quality of relationships, respect for individuality and the facilitation of self-determination.
Consideration of the identified key issues can help to ensure successful specialised palliative home-care. Knowledge of these should also be considered when researching and assessing quality of care.
German Clinical Trials Register DRKS-ID: DRKS00012421; http://www.germanctr.de.
专业姑息家庭护理在患者熟悉的环境中为患有危及生命疾病的患者提供支持。全球范围内，姑息治疗团队的数量以及接受护理的患者数量都在增加。为了评估和提高质量，有必要了解如何成功提供专业姑息家庭护理。为此，我们研究了所有相关利益相关者的观点。
确定患者、其亲属及相关医疗专业人员认为对确保专业姑息家庭护理成功至关重要的问题。
我们采用基于参与观察、访谈和焦点小组的定性设计，遵循扎根理论方法的原则。
设置/参与者：德国黑森州所有为成年人提供护理的专业姑息家庭护理团队（共22个）参与了研究。我们进行了参与观察（共5次），并采访了患者（共14名）、亲属（共14名）以及在专业姑息家庭护理机构工作或与之合作的医疗专业人员（共30名）。我们还与医疗专业人员进行了焦点小组讨论（共4次），包括进行成员核对。
成功的专业姑息家庭护理需要治疗复杂症状，并提供全面护理，包括护理组织、让亲属参与以及解决死亡和临终问题。为患者和亲属提供安全感是在家中提供护理的关键。护理提供偏好包括注重关系质量、尊重个性以及促进自主决定。
考虑已确定的关键问题有助于确保专业姑息家庭护理取得成功。在研究和评估护理质量时也应考虑这些知识。
德国临床试验注册中心DRKS编号：DRKS00012421；网址：http://www.germanctr.de 。
