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

Abstract

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. Conclusions: Distress outcomes exceeding those of the comparison group were indicated in both clinical groups. Significant distress differences were demonstrated between the Swedish and the Icelandic parents. Analysis of the outcomes indicates that center type and related differences in patient influx rate and local organization of care are viable explanations for these findings. Methods are proposed for enhancing family care at small centers in order to compensate for conditions associated with burden of parents of children with cancer.

Study III. Aim: Assessment of levels of symptoms of Vital Exhaustion (VE) in childhood cancer (CC) parents and its relationship to Traumatic Stress Symptoms (TSS) is a necessary prerequisite for developing support programs. Methods: Participants were 471 Swedish and Icelandic parents of CC patients diagnosed between the years 1986-2007. Our reference group comprised of 174 parents of children without any known chronic or lethal disease. Parental Vital Exhaustion was assessed using the Maastricht Questionnaire (MQ-21) and Traumatic stress symptoms assessed using the Impact of Events Scale-Revised (IES-R). Result: Comparison of parents in the clinical and non-clinical groups (NCG) revealed a significantly higher mean level of VE score in the clinical group. There was also a significant difference in MQ mean score between males and females in the clinical group, women having a higher mean MQ total score than men, but no such difference was evident in the non-clinical group. Time from diagnosis significantly affected VE scores. Type of child cancer diagnosis also affected levels of VE scores, although non-significantly (p=0.55), while the number of differential treatments had no significant effect on levels of VE. Analysis of MQ and IES-R total scores demonstrated a strong relationship between VE and TS. Further analysis of subscales indicated a correlation between MQ total score and symptoms of Intrusion (r.536 – p<0.001), Avoidance (r.463 - p<0.001) and symptoms of Hyperarousal (r.692 – p<0.001). Conclusion: Due to their elevated levels of VE, parents of children diagnosed with cancer could be at risk of developing other physical conditions (e.g. cardiovascular disease) as apparent in studies of other populations in which VE scores are elevated, in addition to other known psychological consequences. These results may therefore add to further knowledge and understanding of the complexity and diversity of childhood cancer-related parental burden over time that needs attention in care and long-term follow-up.