The Buddy intervention: designing an additional support system for the last year of life. Qualitative insights from triangulated interviews and focus group discussions

Abstract

Abstract Aim Health and social care structures available for the last year of life care are still not always adequately used. Palliative care, for instance, is still provided late in the disease course, contradicting early integration. We therefore aim to define elements of a possible complementary support concept based on specific experience to help facilitate death at home. Subject/methods Qualitative triangulation of data was conducted from countrywide individual interviews (patients and relatives, n = 45) and focus group discussions (health and social care professionals, n = 22), in Germany. Data were transcribed verbatim and analyzed within a framework analysis. Using Bradshaw’s sociological construct of needs, qualitative data sequences were converted into needs and sorted by the theory of social support. Results Informants described having needs in emotional, informational, appraisal, and instrumental dimensions. Unmet needs for information were frequently reported, affecting all other need dimensions. To address these concerns, informants expressed a need for someone proactively providing emotional, appraisal, and instrumental support, such as organizing respite support, giving feedback on care provision, and validating caring relatives. Conclusion We assume an impact of insufficient information about care options on instrumental, emotional, and appraisal needs and help-seeking actions, increasing the risk of inpatient death. Proactive support is required to address patients’ and families’ needs, connecting the existing care structures. A “buddy” for the last phase of life serving as a low-threshold contact person with real-time knowledge to support patients and families could be one model to support and guide patients and their families and enable dying at home, if possible.