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.