How can we ensure the success of specialised palliative home-care? A qualitative study (ELSAH) identifying key issues from the perspective of patients, relatives and health professionals.

ABSTRACT

BACKGROUND: 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. AIM: To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care. DESIGN: 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 (n = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations (n = 5), and interviewed patients (n = 14), relatives (n = 14) and health professionals working in or collaborating with specialised palliative home-care (n = 30). We also conducted focus groups (n = 4) with health professionals including a member check. RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION German Clinical Trials Register DRKS-ID DRKS00012421; http//www.germanctr.de.