Abstract
Purpose
This study determined 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 328 parents of 211 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 found between the parent groups, Icelandic parents scoring higher on 5 of the 11 distress subscales of the PPD-C and in a majority of the illness-specific domains. A tendency towards more negatively affected general mental health was found in Swedish parents (GHQ, p = 0.059).
Conclusions
Distress outcomes exceeding those of the comparison group were found in both clinical groups. Significant distress differences were found 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 of the findings. Methods are proposed for enhancing family care at small centers in order to compensate for conditions associated with burden on parents of the child’s cancer.
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Acknowledgments
The authors thank the parents who participated in the study. We acknowledge assistance from the Icelandic Childhood Cancer Parent Association and Jeremy Becker for valuable assistance and comments on the manuscript. This work was supported by The Swedish Childhood Cancer Foundation [PROJ09/127], The Cancer and Traffic Injury Fund, Sweden [C20002], The Icelandic Childhood Cancer Association, and the Iceland Kristin Fund, Iceland.
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None of the authors have declared any conflict of interest.
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Gudmundsdóttir, E., Hörnquist, L. & Boman, K.K. Psychological outcomes in Swedish and Icelandic parents following a child’s cancer—in the light of site-related differences. Support Care Cancer 21, 1637–1645 (2013). https://doi.org/10.1007/s00520-012-1708-0
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DOI: https://doi.org/10.1007/s00520-012-1708-0