On a journey for survival : everyday life during radiation therapy from the perspectives of women with breast cancer and their families

This thesis focuses on women diagnosed with breast cancer and their family members. Since a breast cancer diagnosis and its subsequent treatment are a strenuous experience not only for the woman afflicted but also for her family members, this thesis aimed to explore the experiences of everyday life during radiation therapy from the perspectives of the woman with breast cancer and her family, as well as exploring families’ experiences of participating in short family health conversations (SFamHC). All included studies were interview studies (Papers I, II, III & IV), where 30 women (20 in Paper I and 10 in Paper II) with breast cancer, 19 family members including the women with breast cancer (Paper III) and 9 families (Paper IV) were interviewed. The data from the interviews was analysed using qualitative content analysis (Papers I & II), a hermeneutical phenomenological method (Paper III) and thematic analysis (Paper IV). The women’s experiences of breathing adapted radiation therapy (BART) (Paper I) were identified in an overall theme, The breath of life, as the women experienced the breathing as a way to influence their treatment and thus their survival. The overall theme could be divided into one main category: Participating in one’s treatment, for good or ill, with four subcategories: Knowing one has done something good, Getting an extra bonus – healthwise, The experience of being in control and Being in a hightechnology environment. Women born in Iraq and the former Yugoslavia, diagnosed with breast cancer and living in Sweden, experienced their everyday life during radiation therapy as a narrow and challenging treatment road to survival (Paper II). Their experiences were structured into three categories: Strategies for survival, Keeping up appearances and Staying in control. More focus should be on acknowledging the woman behind the diagnosis, regardless of her origin, in order to develop individualised support programmes to help women cope with everyday life during radiation therapy. The families’ lived experience when a family member is diagnosed with breast cancer (Paper III) was described as a challenging endeavour to regain an ordinary, safe life, hoping to reach a safe haven. The families felt that life as they knew it had disappeared and they were fumbling in the dark and pursuing balance by struggling to keep the family together and by maintaining a positive attitude. They were also struggling with guilt and inadequacy, due to their difficulties in communicating emotional distress and to feeling abandoned by the health care professionals. Families’ experiences of participating in short family health conversations (SFamHC) (Paper IV) were identified in four key themes: Bringing everything out in the open, Being confirmed as an individual and as a family, Gaining an unexpected insight and Timing and context matter. The findings from this thesis can deepen the understanding of what living with breast cancer is like, from the perspectives of the women with breast cancer and their families, as well as increasing the understanding of their needs. Their experiences could be described as a journey for survival, a journey that starts at the time of diagnosis and that they are still partaking in when concluding their radiation therapy treatment. The journey for survival sends them off into the unknown, where they strive to regain control, balancing between hope and despair, experiencing their life as divided into an outer and inner world and needing support from each other as well as from health care professionals. A possible way to support the women and their family members could be to offer them participation in short family health conversations (SFamHC), since these conversations provide them with an opportunity to verbalise and share their feelings and thoughts. Those participants (Paper IV) who took part in SFamHC felt that their participation in the SFamHC helped them to move forward and beyond the breast cancer diagnosis