Experiences of health care in family members of persons with incurable oesophageal or gastric cancer – a hermeneutical phenomenological study

BACKGROUND: Cancer affects patient's family members, who often become informal caregivers. For those with an incurable illness a palliative care approach is important. The approach includes need and support for patients and family members. Early integrated PC has been proven beneficial for patients with oesophageal or gastric cancer. However, the knowledge about family members' burden is general and lacks in specificity. It is argued that early PC needs to be diagnosis specific to be successful. Previous research has shown that family members of cancer patients in general experience cancer care as unsatisfying and somewhat problematic. The specific needs, in terms of health care of family members of persons with incurable oesophageal or gastric cancer are unclear. This study therefore aims to capture their lived experiences of health care. METHOD: This study was conducted as a qualitative interview study during 2021-2023 and analysed with hermeneutic phenomenology according to the method described by Max van Manen. The analysis was inspired by Van Manen's analytical steps to find the essence of the phenomenon of health care experiences. Furthermore, in order to identify these, the analysis was guided by Van Manen's description of lived experiences through the five existentials of the human being: Corporality, Temporality, Spatiality, Relationality and Materiality. RESULTS: The findings were captured in the main theme "To strive and struggle", which described the lived hardship of health care experiences by family members. The strives and struggles were identified in different areas and five sub-themes described these: "The body as a tool", "Time is out of order", "Navigating in health care spaces", "To be in the hands of the right persons" and "To learn and develop new skills". CONCLUSION: This study adds to the knowledge on health care experiences of family members of those with incurable oesophageal or gastric cancer. It suggests that supporting and guiding family members through the fragmented health care system by introducing integrated early PC may decrease anxiety, increase the likelihood to form trusting relationships and lead to fewer emergency department visits.