Family involvement in dementia special care units in nursing homes:A qualitative care ethical study into family experiences

Aim: To explore the moral dimension of family experiences with being involved in the care of their loved one with dementia in the nursing home, using the care ethical framework of Tronto. Design: This qualitative study used a care ethical approach in which empirical data and care ethical theory were dialectically related and mutually informing. Methods: Fifteen close family members of nursing home residents with dementia were interviewed between February 2020 and October 2020. Forty-two interviews were conducted, based on a semi-structured open-ended design. A thematic narrative approach combined with the five phases of care as defined by Tronto was used to analyse the empirical data. Subsequently, Tronto's identified ethical qualities were used to identify the moral dimension of these empirical findings. Results: We found that in the care process (1) family can find it difficult to recognize their loved one's care needs; (2) both family and staff are reluctant to discuss the allocation of responsibilities with each other; (3) family sometimes feels insecure when it comes to connecting with their loved one; (4) family is often reluctant to provide feedback to staff when they are critical about the care that has been given; and (5) family is generally mild in judging staff, due to staff shortages. The care ethical interpretation of these findings showed that the moral qualities of attentiveness, responsibility, competence, responsiveness, and solidarity are under pressure to a certain extent. Conclusion: Family experiences moral distress during the care process, which hinders family involvement in nursing homes for people with dementia. Impact: Nursing home staff can look for and pilot strategies focused on supporting families to act more in accordance with the moral qualities that are under pressure. This can improve family involvement in practice. Patient or Public Contribution: No Patient/Public Contribution. Implications for Practice/Policy: Nursing home staff paying more attention to families' emotional struggles related to the decline of their loved one, could help families to be more attentive to noticing true care needs of the resident. Both family and nursing home staff should take more often initiatives to evaluate the division of care responsibilities with each other. Nursing home staff should help family connect with their loved one during their visits if they experience difficulties in doing so. Nursing home staff taking more often initiatives to contact family and ask them how they perceive the care for their loved one, can positively affect the responsiveness of both family and staff. It would be helpful if nursing home management could ensure the presence of sufficient and qualified staff so that the first four phases of the care process are not hindered by the lack of staff

Family involvement in nursing homes: an interpretative synthesis of literature.

BACKGROUND: Family involvement in nursing homes is generally recognized as highly valuable for residents, staff and family members. However, family involvement continues to be challenging in practice. AIM: To contribute to the dialogue about family involvement and develop strategies to improve family involvement in the nursing home. METHODS: This interpretative synthesis consists of a thematic analysis and care ethical interpretation of issues regarding family involvement from the perspective of families in nursing homes reported in literature. FINDINGS: This study reveals the complexities of family involvement in the nursing home by drawing attention to the moral dimension of the issues experienced by families, as seen through the theoretical lens of Baier’s care ethical concept of trust as a theoretical lens. The synthesis of literature resulted in a thematic categorization of issues reported by families, namely, family–staff relationship, psychosocial factors and organizational circumstances. The care ethical interpretation of the synthesis of literature showed that the concept of trust resonates with all reported issues. Trust evolves over time. Early issues are mostly related to getting to know each other. Secondly, families want to experience that staff are competent and of good will. Difficult feelings families may have, such as guilt or loneliness, and dealing with the deterioration of the loved one puts families in a vulnerable position. This power imbalance between family and staff impedes a trusting relationship. Issues related to organizational circumstances, such as understaffing, also undermine families' trust in staff and the nursing home. DISCUSSION AND CONCLUSION: Baier’s theoretical concept of trust provides a deeper insight into the moral dimension of family involvement from the perspective of families in the nursing home. To improve family involvement in practice, we propose to aim future interventions at reinforcing trust in the relationship between family and staff as well as in the organizational context in which these care relationships occur