Year: 2024
Type: conference-abstract
Abstract: Background In nursing home care for people with Huntington’s disease (HD), as in every care relationship, a certain degree of distance and proximity is expected as part of professionalism. This involves upholding boundaries while also being present and engaged. Aims To capture the situated experience of distance and proximity in care relationships from caregiver’s perspectives in nursing home care for people with HD, and to understand the normative expectations and challenges as they arise. Method/Techniques A care ethics approach to research was used. Within this framework a scoping literature review and an empirical study employing interpretative phenomenology were conducted. Five care professionals were observed and interviewed twice. The second interviews incorporated association cards. A co-creation session facilitated the sharing of experiences, validation of findings, and generation of recommendations. Results/Outcome The creation of poetic portraits yielded five distinct themes, characterized by the interplay of distance and proximity: 1/emotions, 2/experience and intuition, 3/(un)reciprocity, 4/special moments such as farewells and memories, and 5/professionalism. Conclusions Care professionals face the challenge of addressing both the complex care needs and personal needs of patients with HD. Normative boundaries are mostly undefined and appear ambiguous, leading to a balancing act between distance and proximity. While care professionals continuously make judgements, this sometimes leads them to doubt their professionalism. Therefore, conscious reflection on the care relationship and normative expectations is important. Regular and easy accessible dialogue should take place systematically. Supporting imagination and empathy can be helpful in this process.
Authors: Annemarie Helmers, Merel Visse
Institutions: University of Humanistic Studies, Drew University
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W4402374318