Non-kin caregivers of terminally ill people: Contributions, experiences, and needs (NOCA)

• Applicants: Dr. Maria Heckel; Privatdozentin Dr. Franziska A. Herbst
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine
• Term: since 2023
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 528683214

Neighbours and friends provide extensive care for individuals in end-of-life situations, in addition to or instead of family members. However, the literature contains little evidence of the experiences, burdens, and benefits of non-kin caregivers. Added to this, non-kin caregivers (e.g. acquaintances, friends, neighbours) are not significantly addressed within political discourse or informational events. The proposed project aims at investigating the extent to which non-kin caregivers contribute to the care of individuals at the end of life. What are the experiences of these non-kin caregivers? What burdens and benefits arise from non-kin caregiving? What are the support needs and wishes of non-kin caregivers? In a first step, we will ask non-kin caregivers about their burdens, benefits, psychological well-being, and needs, by means of a questionnaire. We will also use the questionnaire to explore the extent and type of care they provide and socio-demographic data. In a second step, we will conduct in-depth interviews with a diverse group of individuals in terms of age, gender, origin, educational level, and employment status. Non-kin caregivers will provide information about their caring activities, motivations, and needs. We will use the findings to develop a framework that outlines the specifics of the non-kin caregiving situation at the end of life. The framework is expected to guide the development of support measures for non-kin caregivers and reveal new and valuable research directions.

• DFG Programme: Research Grants