Standing next to but not being part of

The overall aim of this thesis was to explore support for relatives from healthcare professionals, before and after a patient’s death, when general palliative care is provided at home. The thesis comprises four studies, based on the perspectives of relatives and registered nurses, using both quantitative and qualitative methods. Studies I and II were register studies with data from the Swedish Register of Palliative Care. Study I analysed data from 160 relatives involved in general palliative care at home across Sweden, using descriptive statistics to describe support from healthcare professionals. Study II analysed open-ended responses from 83 of these relatives through thematic analysis to describe their suggestions for improving support. Study III analysed data from four focus groups with 18 registered nurses, using content analysis to explore their experiences of supporting relatives when general palliative care is provided at home. Study IV analysed data from 14 interviews with relatives involved in general palliative care at home, applying phenomenological hermeneutical analysis to elucidate their experiences of support from healthcare professionals. The findings show that even if relatives receive some support (I–IV), it is often perceived as insufficient (I–II, IV), and that they tend to be more satisfied with support before the patient’s death than after (I–II, IV). The findings also indicate possible differences in whether support is offered, depending on the type of relative (I, III–IV). Overall, relatives need structured support through shared responsibility, continuous and timely information and communication, and access to competent and familiar healthcare professionals (II–IV). They also need to be seen as persons with their own needs beyond those of the patient and to receive tailored support (II, IV), including emotional support to process grief and experiences (III–IV), both before and after the patient’s death. Furthermore, the findings show that relatives and healthcare professionals may share fundamental needs, such as a need for structure and shared responsibility, and a need to know and be in control of the situation (II–IV). Healthcare professionals’ ability to support relatives may therefore partly depend on their own access to support (III). This thesis contributes to increased knowledge on support for relatives in general palliative care at home by providing insights from two perspectives: relatives as recipients of support and registered nurses as providers of support, before and after a patient’s death. In conclusion, to meet relatives’ personal and changing support needs, healthcare professionals must adopt a dual focus on both patients and relatives, along with a structured and person-centred approach. Although some support is provided, it is often unstructured, insufficiently personalised, and unequal, both before and after the patient’s death. These shortcomings, resulting from limited knowledge and competence among healthcare professionals and organisational constraints regarding time and resources, risk leaving relatives feeling overwhelmed, unsafe, and alone, standing next to but not being part of palliative care when provided at home.