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

Sammanfattning: This thesis focuses on women diagnosed with breast cancer and their familymembers. Since a breast cancer diagnosis and its subsequent treatment are astrenuous experience not only for the woman afflicted but also for her familymembers, this thesis aimed to explore the experiences of everyday life duringradiation therapy from the perspectives of the woman with breast cancer andher family, as well as exploring families’ experiences of participating in shortfamily health conversations (SFamHC).All included studies were interview studies (Papers I, II, III & IV), where 30women (20 in Paper I and 10 in Paper II) with breast cancer, 19 family membersincluding the women with breast cancer (Paper III) and 9 families (PaperIV) were interviewed. The data from the interviews was analysed using qualitativecontent analysis (Papers I & II), a hermeneutical phenomenologicalmethod (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 womenexperienced the breathing as a way to influence their treatment andthus 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 hightechnologyenvironment.Women born in Iraq and the former Yugoslavia, diagnosed with breast cancerand living in Sweden, experienced their everyday life during radiation therapyas a narrow and challenging treatment road to survival (Paper II). Theirexperiences were structured into three categories: Strategies for survival, Keepingup appearances and Staying in control. More focus should be on acknowledgingthe woman behind the diagnosis, regardless of her origin, in order to develop individualised support programmes to help women cope with everydaylife during radiation therapy.The families’ lived experience when a family member is diagnosed withbreast cancer (Paper III) was described as a challenging endeavour to regain anordinary, safe life, hoping to reach a safe haven. The families felt that life as theyknew it had disappeared and they were fumbling in the dark and pursuing balanceby struggling to keep the family together and by maintaining a positive attitude.They were also struggling with guilt and inadequacy, due to their difficultiesin communicating emotional distress and to feeling abandoned by thehealth care professionals.Families’ experiences of participating in short family health conversations(SFamHC) (Paper IV) were identified in four key themes: Bringing everythingout in the open, Being confirmed as an individual and as a family, Gaining anunexpected insight and Timing and context matter. The findings from this thesis can deepen the understanding of what livingwith breast cancer is like, from the perspectives of the women with breast cancerand their families, as well as increasing the understanding of their needs.Their experiences could be described as a journey for survival, a journey thatstarts at the time of diagnosis and that they are still partaking in when concludingtheir radiation therapy treatment. The journey for survival sends themoff into the unknown, where they strive to regain control, balancing betweenhope and despair, experiencing their life as divided into an outer and innerworld and needing support from each other as well as from health care professionals.A possible way to support the women and their family members couldbe to offer them participation in short family health conversations (SFamHC),since these conversations provide them with an opportunity to verbalise andshare their feelings and thoughts. Those participants (Paper IV) who took partin SFamHC felt that their participation in the SFamHC helped them to moveforward and beyond the breast cancer diagnosis.