LIVING WITH CHILDHOOD CANCER - Family Members’ Experiences and Needs

Abstract: The overall aim of this thesis was to elucidate family members’ lived experiences and needs during a child’s cancer trajectory and to describe how the illness and its treatment influence both individuals within the family and the family as a whole. Seventeen families with a child under the age of 13 and newly diagnosed with cancer were followed during the child’s treatment trajectory by means of interviews and observations. Parents, patients and siblings seven years or older were interviewed at the time of diagnosis, during the treatment and after it was completed. Patients younger than seven were observed during their initial hospitalization. The interviews were analyzed with a hermeneutic phenomenological approach and the observations with content analysis. The results from the observations (Paper II) showed that the young children’s needs during their initial hospitalization were described as a need to have the parent close by, a need to play and feel joy, a need for participation in care and treatment, a need for a good relationship with the staff and a need for physical and emotional satisfaction. The results from the interviews showed that, at time of diagnosis (Paper I) the families’ lived experience was described as a broken life world and an immediate striving to survive. Their secure everyday life disappeared and was replaced by fear, chaos and loneliness. When striving to help the child and the family survive, family members endeavoured to feel hope and have a positive focus, to gain control and to feel close to other people. During treatment (Paper III) the families lived experience was described as focus on the ill child - an everyday struggle. Each day’s focus was on the child and the families experienced it as a tough period which they struggled to come through. Only when the sick child’s needs were satisfied, could the focus move to other parts of the family. Family members felt drained, locked up and isolated. Family life was experienced as disrupted and they struggled to retain normality and become experts. Perspectives on life changed; it was important to enjoy life and to be aware of sources of support. When treatment was completed (Paper IV) the families’ lived experience was described as returning to a changed ordinary life - incorporating a trying and contradictory experience. The families felt relieved that the child’s treatment was over but, at the same time they still experienced stresses and strains in life. Family members felt changed and especially the parents needed to focus on themselves in order to recover. The families wanted closeness but, from time to time, felt a loss of concern from others. The findings from this thesis can deepen the understanding of what it is like living with childhood cancer and of the needs of young children with cancer. By reflecting on the findings, paediatric oncology staff may become increasingly thoughtful and thereby better prepared to take care of family members of a child with cancer, including the sick children themselves.