A caring safety net or a broken shelter—Relatives’ experiences of specialized palliative home care: A national registry study

Background: Cancer and circulatory diseases are overrepresented among the annual deaths in Sweden. Specialized palliative care (SPC) is considered complex, especially by cancer patients who have undergone long-term treatment. Relatives caring for a person with cancer within the home are faced with many demanding tasks. Purpose: To describe and map relatives' experiences of the end-of-life care given in specialized palliative home care from a Swedish national perspective. Methods: = 563). Reflexive thematic analysis was used for the qualitative data, followed by a quantifying process inspired by Sandelowski. Findings: Two main themes were identified, with related themes and subthemes: "Home-a safe, dignified, and good place for dying" and "Home-a challenging, lonely, and unworthy place for dying." As a place of dying during SPC, home provided both security and challenging events. It offered security for the family and upheld their dignity with the presence and support of competent healthcare professionals (HCPs). Conversely, challenging events emphasized how the relatives were unprepared for their loved one's death and struggled to cope with the end-of-life situation. Some relatives felt that too much of the responsibility was left to them. However, the quantitative data showed that 99.1% of the relatives knew where to find urgent help during the last week of life, and the quantified qualitative data showed that HCPs were often available and supportive. Conclusion: Specialized palliative home care must strive to minimize challenging events that relatives experience during their loved one's end of life and reinforce protective factors such as the presence of HCPs. As the end-of-life period is challenging for families, adequate support and competencies must be secured. Otherwise, there is a risk of increased family suffering and relatives having difficulties with grief after the death.