What relatives of older medical patients want us to know - a mixed-methods study

Background: Relatives of acutely hospitalised older medical patients often act as case managers during a hospital trajectory. Therefore, relatives' experiences of collaboration with staff and their involvement in care and treatment are highly important. However, it is a field facing many challenges. Greater knowledge of the values and areas that are most important to relatives is needed to facilitate the health care staff to better understand and prepare themselves for collaboration with relatives and to guide family care. Methods: The aims were to 1) describe the aspects of collaboration with staff during the hospital care trajectory emphasised by relatives of older medical patients 2) compare the characteristics of relatives who wrote free-text notes and those who did not. Relatives of acutely hospitalised older medical patients responded to a structured questionnaire (n = 180), and nearly half wrote free-text comments (n = 79). Free text was analysed with qualitative content analysis. Differences between (+) free text/(-) free text groups were analysed with chi(2) test and Kruskal-Wallis test. Results: Analysis disclosed three categories I) The evasive white flock, concerning the experienced evasiveness in staff attitudes and availability, II) The absence of care as perceived by the relatives and III) Invisible & unrecognised describing relatives' experience of staff's lack of communication, involvement and interactions with relatives especially regarding discharge. Significant differences were found between relatives who wrote free-text and those who did not regarding satisfaction, trust and having a health care education. Conclusions: This study provides knowledge of aspects relatives of older medical patients find particularly problematic and, further, of characteristics of relatives using the free-text field. Overall, these relatives were met with evasiveness from staff, an absence of care and felt invisible and unrecognised in the lacking collaboration with staff. Hence, strategies to ensure quality care and systematic involvement of relatives are needed, and the findings in this study may contribute to, and guide, quality improvement of family centered care in acute hospital wards.