Together but still alone - A qualitative study exploring how family members of persons with incurable oesophageal or gastric cancer manage everyday life.

Background: Cancer affects not only the person with the disease but those around them. Being a family member is described as strenuous and, often, associated with stress, anxiety and feelings of loneliness. There is a heightened risk of distress for family of those with fast-progressing, severe oesophageal or gastric cancer. Early palliative care involving family is vital yet often overlooked. In order to include family members in early palliative care their management in everyday life needs to be explored. Method: Qualitative inductive interview study using content analysis guided by Graneheim and Lundman. Result: The analysis resulted in the overarching theme "Managing the disease together but still alone". Three categories were identified: Adapting to the disease, Taking control of the situation, Processing emotions. Each category described family members management in various aspects of everyday life together with the ill person and alone. Conclusion: The results may contribute to an awareness of family members' management of large parts of everyday life and, further, their feelings of loneliness, and indicates that family members should be included early in oesophageal or gastric cancer palliative care. Further studies are needed to develop the content of such family-inclusive early palliative care. Summary box: What is already known on this topic Cancer is considered a "we-disease". Being a family member or informal caregiver of someone with cancer is fulfilling but strenuous and family members of those with oesophageal or gastric cancer have an increased risk of prolonged stress. Approximately half of all cancers of the oesophagus or stomach are incurable and the disease course is rapid, with severe symptoms. It is important to include family members in palliative care, which ought to be initiated early. There is currently insufficient knowledge about how family members of persons with incurable oesophageal or gastric cancer manage in everyday life, and also about the palliative care including them that should be provided. What this study adds This study adds an insight into family members' perspective of incurable oesophageal or gastric cancer and how they manage everyday life. It provides information about their management of everyday life, early in the disease course and on many levels, both together with the ill person and alone. How this study might affect research, practice or policy The study could contribute to an awareness in the health care community of how family members manage the disease, which might lead to palliative care inclusion. It also might inspire further studies on how the palliative care could be tailored to family members of those with incurable oesophageal or gastric cancer. [ABSTRACT FROM AUTHOR]