Suffering while resigning to an unacceptable violation of dignity

Background: The interaction of health personnel with relatives is linked to the quality of care results in nursing homes. However, there is limited knowledge of how relatives perceive being an integral part of the nursing home context. This secondary analysis has its starting point in an ethical concern about relatives’ experiences in a previous study. Aim: To critically discuss relatives’ experiences of suffering when their next of kin live in a nursing home in a rural arctic context. Research Design, Participants and Context: The critical hermeneutic stance is informed by Habermas. The secondary analysis is conducted on original data from five semi-structured focus groups with 18 relatives of residents of two nursing homes in a rural part of Norway. The theoretical framework concerning dignity, well-being, and suffering, as developed by Galvin and Todres, contrasts the analysis. Ethical Considerations: The study followed the principles of the Helsinki Declaration. It was approved by the Norwegian Center for Research Data (NSD) (reg. no. 993360). Findings: The main theme of this study is: suffering while resigning to an unacceptable violation of dignity. This theme is deepened by two subthemes: (a) suffering while adapting to a relationship of dependence and (b) suffering while accepting the unacceptable. Conclusions: Relatives experience suffering as a cross-pressure in their struggle to interact responsibly with health personnel in nursing homes. This may have a negative outcome, where relatives end up adapting to being silent witnesses to missed care and a violation of dignity

Dignity at stake – relatives’ experiences of influencing dignified care in nursing homes

Background - Dignity, in the care of older nursing home residents, has been an increasingly part of the public discourse the recent years. Despite a growing body of knowledge about dignity and indignity in nursing homes, we have less knowledge of how relatives experience their role in this context. This study is a follow-up to a previous study in nursing homes, which gave rise to concern about the relatives’ descriptions of residents’ dignity. The aim of this current study is to critically discuss relatives’ experiences of influencing the dignified care of residents of nursing homes. Methods - Methodologically, the study is informed by a critical hermeneutic stance, where the analysis is guided by a qualitative interpretive approach and a humanizing framework. This is a secondary analysis that includes data from five semi-structured focus groups from a previous study. The participants were 18 relatives of 16 residents living in two nursing homes in rural northern Norway. Results - The main theme in this study, preventing missed care when dignity is at stake, is identified when relatives of nursing homes experience that they are able to influence dignified care by (a) pinpointing to prevent missed care and (b) compensating when dignity is threatened. Conclusions - Despite their stated good intentions to safeguard dignity, relatives of nursing homes experience being alienated in their attempts to change what they describe as undignified and unacceptable practice into dignified care. The relatives’ observations of dignity and indignity are, contrary to what national and international regulations require, not mapped and/or used in any form of systematic quality improvement work. This indicates that knowledge-based practice in nursing homes, including the active application of user and relative knowledge, has untapped potential to contribute to quality improvement towards dignified care