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Psychological outcomes in Swedish and Icelandic parents following a child’s cancer—in the light of site-related differences

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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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References

  1. Van Dongen Melman JE, Pruyn JF, De Groot A, Koot HM, Hahlen K, Verhulst FC (1995) Late psychosocial consequences for parents of children who survived cancer. J Pediatr Psychol 20:567–586

    Article  PubMed  Google Scholar 

  2. Santacroce S (2002) Uncertainty, anxiety, and symptoms of posttraumatic stress in parents of children recently diagnosed with cancer. J Pediatr Oncol Nurs 19:104–111

    Article  PubMed  Google Scholar 

  3. Dixon-Woods M, Findlay M, Young B, Cox H, Heney D (2001) Parents’ accounts of obtaining a diagnosis of childhood cancer. Lancet 357:670–674

    Article  PubMed  CAS  Google Scholar 

  4. Kazak AE (1998) Posttraumatic distress in childhood cancer survivors and their parents. Med Pediatr Oncol Suppl 1:60–68

    Article  Google Scholar 

  5. Boman KK, Viksten J, Kogner P, Samuelsson U (2004) Serious illness in childhood: the different threats of cancer and diabetes from a parent perspective. J Pediatr 145:373–379

    Article  PubMed  Google Scholar 

  6. Giammona AJ, Malek DM (2002) The psychological effect of childhood cancer on families. Pediatr Clin North Am 49:1063–1081

    Article  PubMed  Google Scholar 

  7. Mu PF, Ma FC, Hwang B, Chao YM (2002) Families of children with cancer: the impact on anxiety experienced by fathers. Cancer Nurs 25:66–73

    Article  PubMed  Google Scholar 

  8. Barakat LP, Kazak AE, Meadows AT, Casey R, Meeske K, Stuber ML (1997) Families surviving childhood cancer: a comparison of posttraumatic stress symptoms with families of healthy children. J Pediatr Psychol 22:843–859

    Article  PubMed  CAS  Google Scholar 

  9. Boman K, Lindahl A, Björk O (2003) Disease-related distress in parents of children with cancer at various stages after the time of diagnosis. Acta Oncol 42:137–146

    Article  PubMed  Google Scholar 

  10. Lindahl Norberg A, Boman KK (2008) Parent distress in childhood cancer: a comparative evaluation of posttraumatic stress, depression and anxiety. Acta Oncol 47:267–274

    Article  Google Scholar 

  11. Van Dongen-Melman JEWM (1995) On surviving childhood cancer: late psychosocial consequences for patients, parents, and siblings. Dissertation, Erasmus Universiteit, Rotterdam, The Netherlands

  12. Hovén E, Anclair M, Samuelsson U, Kogner P, Boman K (2008) The influence of pediatric cancer diagnosis and illness complication factors on parental distress. J Pediatr Hematol Oncol 30:807–814

    Article  PubMed  Google Scholar 

  13. Koch CR, Donaldson MH (1975) Psychosocial care in malignant diseases of childhood: organizational and structural implications. Semin Oncol 2:317–321

    PubMed  CAS  Google Scholar 

  14. Casillas J, Kahn KL, Doose M, Landier W, Bhatia S, Hernandez J, Zeltzer LK (2010) Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors. Psychooncology 19:982–990

    Article  PubMed  Google Scholar 

  15. Duffey-Lind EC, O'Holleran E, Healey M, Vettese M, Diller L, Park ER (2006) Transitioning to survivorship: a pilot study. J Pediatr Oncol Nurs 23:335–343

    Article  PubMed  Google Scholar 

  16. Reiss JG, Gibson RW, Walker LR (2005) Health care transition: youth, family, and provider perspectives. Pediatrics 115:112–120

    Article  PubMed  Google Scholar 

  17. Van Dongen-Melman JE, Pruyn JFA, De Groot A, Koot HM, Verhulst FC (1995) Psychometric properties of an instrument measuring psychosocial functioning of parents of children who survived cancer (Partly published in J Pediatr Psychol 1995;20:567–86). In: On surviving childhood cancer: late psychosocial consequences for patients, parents, and siblings. Dissertation, Erasmus Universiteit, Rotterdam, The Netherlands, pp. 101–120

  18. Goldberg D, Williams P (1991) A user’s guide to the General Health Questionnaire. NFER-Nelson, Windsor

    Google Scholar 

  19. NOPHO-Annual-Report (2012) Childhood cancer in the Nordic countries. Report on epidemiologic and therapeutic results from registries and working groups. Nordic Society of Pediatric Haematology and Oncology, Uppsala

    Google Scholar 

  20. Dahlquist LM, Czyzewski DI, Copeland KG, Jones CL, Taub E, Vaughan JK (1993) Parents of children newly diagnosed with cancer: anxiety, coping, and marital distress. J Pediatr Psychol 18:365–376

    Article  PubMed  CAS  Google Scholar 

  21. Fife B, Norton J, Groom G (1987) The family’s adaptation to childhood leukemia. Soc Sci Med 24:159–168

    Article  PubMed  CAS  Google Scholar 

  22. Grootenhuis M, Last B (1997) Predictors of parental emotional adjustment to childhood cancer. Psychooncology 6:115–128

    Article  PubMed  CAS  Google Scholar 

  23. Sloper P (2000) Predictors of distress in parents of children with cancer: a prospective study. J Pediatr Psychol 25:79–91

    Article  PubMed  CAS  Google Scholar 

  24. Kazak AE, Stuber ML, Barakat LP, Meeske K, Guthrie D, Meadows AT (1998) Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancers. J Am Acad Child Adolesc Psychiatry 37:823–831

    Article  PubMed  CAS  Google Scholar 

  25. Manne S, Duhamel K, Redd WH (2000) Association of psychological vulnerability factors to post-traumatic stress symptomatology in mothers of pediatric cancer survivors. Psychooncology 9:372–384

    Article  PubMed  CAS  Google Scholar 

  26. Stuber ML, Christakis DA, Houskamp B, Kazak AE (1996) Posttrauma symptoms in childhood leukemia survivors and their parents. Psychosomatics 37:354–261

    Article  Google Scholar 

  27. Lindahl Norberg A, Lindblad F, Boman K (2005) Parental traumatic stress during and after paediatric cancer treatment. Acta Oncol 44:382–388

    Article  Google Scholar 

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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.

Conflict of interest

None of the authors have declared any conflict of interest.

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Authors and Affiliations

  1. Childhood Cancer Research Unit, Department of Women’s and Children’s Health, Karolinska Institutet, Astrid Lindgren Children’s Hospital, 17176, Stockholm, Sweden

    Eygló Gudmundsdóttir, Lina Hörnquist & Krister K Boman

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  1. Eygló Gudmundsdóttir
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  2. Lina Hörnquist
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  3. Krister K Boman
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Correspondence to Eygló Gudmundsdóttir.

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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

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