The effects of parenting a child diagnosed with cancer : distress, resilience and vital exhaustion : living with death in your face

Sammanfattning: Study I: Aim. Studies of parental reactions to a child’s cancer have traditionally been carried out within the framework of psychiatry and psychopathology. We studied the significance of individual resource factors strengthening parents’ resilience to long-term cancer-related distress, a focus that has rarely been used. Participants and methods. The two-nation Nordic sample included 333 parents; 159 of whom had experienced a child’s cancer, and 174 reference parents. We studied the sense of coherence (SOC) using the SOC-13 questionnaire. For assessing distress reactions we used a primarily illness-specific 11-dimensional Parental Psychosocial Distress in Cancer (PPD- C) self-report questionnaire developed for use with parents of childhood cancer patients, and the General Health Questionnaire (GHQ). Resilience was defined as absence of/less severe distress. Results. Low SOC was significantly associated with more severe distress in all dimensions of the PPD-C and GHQ. The influence of SOC varied with parents’ gender, showing a stronger modifying influence among mothers. Mothers and fathers also differed in their utilization of professional psychosocial support when confronted with the child’s cancer. Conclusion. Parental resilience to cancer-related distress varies with identifiable strength factors. A strengths-oriented approach helps in understanding parental adjustment to childhood cancer. Addressing resilience helps to identify parents at risk and in need of professional support when faced with a child’s cancer. Study II: Aim. Determining the incidence of disease-related distress symptoms in parents from two treatment sites: a large specialized childhood cancer (CC) center in Sweden and a smaller pediatric unit in Iceland. The two groups were compared by considering differences in center type and care organization. Methods. Participants were 306 parents of 188 CC patients, in- or off-treatment. Illness- specific distress was assessed using the multi-dimensional Parental Psychosocial Distress in Cancer (PPD-C) questionnaire. General psychiatric symptoms were assessed using the General Health Questionnaire (GHQ-12). Swedish and Icelandic groups were compared and outcomes studied with regard to site characteristics. Parents in the general population served as a reference group. Results. Distress outcomes in both clinical groups exceeded the levels of the reference group. Systematic differences were evident between the parent groups, Icelandic parents scoring higher on 5 of the 11 distress subscales in the PPD-C and in a majority of the illness-specific domains.