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Involvement in care in pediatric cancer patients: implications for treatment compliance, mental health and health-related quality of life

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Abstract

Purpose

The present study developed a new measure of involvement in care of pediatric oncology patients termed the Child Involvement in Care Scale (CICS), and empirically examined the mental health consequences of involvement in care for children with cancer.

Method

The CICS was administered to 236 children with cancer aged 8–12 who were recruited from three large hospitals in Israel. The children also completed questionnaires on their mental-health symptoms and emotional well-being. The children’s parents completed measures on their child’s compliance with treatment and health-related quality of life (HRQOL).

Results

Exploratory and confirmatory factor analyses supported a 2-factor structure (knowledge and participation), representing different aspects of involvement in care. Compliance with treatment served as a mediator for the relationships between involvement in care and health-related outcomes. Involvement in care was positively associated with higher treatment compliance. In addition, treatment compliance was positively associated with HRQOL and positive emotions but negatively associated with psychiatric symptoms.

Conclusion

Pediatric cancer patients’ involvement in the process of care is linked to better treatment compliance and mental health outcomes. Additional research is needed to examine the specific conditions and contexts in which involvement in care contributes to mental health and subjective well-being of children with cancer.

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References

  1. Gabe, J., Olumide, G., & Bury, M. (2004). ‘It takes three to tango’: a framework for understanding patient partnership in pediatric clinics. Social Science & Medicine, 59(5), 1071–1079. https://doi.org/10.1016/j.socscimed.2003.09.035.

    Article  Google Scholar 

  2. British Medical Association. (2001). Consent, rights and choices in health care for children and young people. London: BMJ Books.

    Google Scholar 

  3. Department of Health & Children. (2000). Report of the public consultation for the national children’s strategy. Dublin: D.O.H.

    Google Scholar 

  4. Spinetta, J. J., Masera, G., Jankovic, M., Oppenheim, D., Martins, A. G., Arush, B., et al. (2003). Valid informed consent and participative decision-making in children with cancer and their parents: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Pediatric Blood & Cancer, 40(4), 244–246. https://doi.org/10.1002/mpo.10262.

    Google Scholar 

  5. Ruhe, K. M., Badarau, D. O., Brazzola, P., Hengartner, H., Elger, B. S., & Wangmo, T. (2016). Participation in pediatric oncology: views of child and adolescent patients. Psycho-Oncology, 25, 1036–1042. https://doi.org/10.1002/pon.4053.

    Article  PubMed  Google Scholar 

  6. Brook, G. (2000). Children’s competency to consent: A framework for practice. Paediatric Care, 12(5), 31–35. https://doi.org/10.7748/paed2000.06.12.5.31.c689.

    Article  Google Scholar 

  7. Tates, K., & Meeuwesen, L. (2001). Doctor–parent–child communication. A review of the literature. Social Science & Medicine, 52(6), 839–851. https://doi.org/10.1016/S0277-9536(00)00193-3.

    Article  CAS  Google Scholar 

  8. Wassmer, E., Minnaar, G., Aal, N. A., Atkinson, M., Gupta, E., Yuen, S., & Rylance, G. (2004). How do paediatricians communicate with children and parents? Acta Paediatrica, 93(11), 1501–1506. https://doi.org/10.1111/j.1651-2227.2004.tb02637.x.

    Article  CAS  PubMed  Google Scholar 

  9. Coyne, I. (2008). Children’s participation in consultations and decision-making at health service level: a review of the literature. International Journal of Nursing Studies, 45(11), 1682–1689. https://doi.org/10.1016/j.ijnurstu.2008.05.002.

    Article  PubMed  Google Scholar 

  10. Coyne, I., Hayes, E., Gallagher, P., & Regan, G. (2006). Giving children a voice. Investigation of children’s experiences of participation in consultation and decision making in Irish hospitals. Dublin: Office of the Minister for Children.

    Google Scholar 

  11. Young, B., Dixon-Woods, M., Windridge, K. C., & Heney, D. (2003). Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ, 326(7384), 305–310. https://doi.org/10.1136/bmj.326.7384.305.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Rylance, G. (1996). Making decisions with children. BMJ, 313(7048), 49.

    Article  PubMed Central  Google Scholar 

  13. Bluebond-Langner, M., Belasco, J. B., & Wander, M. D. (2010). I want to live, until I don’t want to live anymore”: involving children with life-threatening and life-shortening illnesses in decision making about care and treatment. The Nursing Clinics of North America, 45, 329–343. https://doi.org/10.1016/j.cnur.2010.03.004.

    Article  PubMed  Google Scholar 

  14. Greenfield, S., Kaplan, S., & Ware, J. E. (1985). Expanding patient involvement in care. Annals of Internal Medicine, 102, 520–528.

    Article  CAS  PubMed  Google Scholar 

  15. Beauchamp, T. L., & Childress, J. F. (1983). Principles of biomedical ethics (2nd edn.). New York: Oxford University Press.

    Google Scholar 

  16. Weisz, J. R., & Stipek, D. J. (1982). Competence, contingency, and the development of perceived control. Human Development, 25(4), 250–281. https://doi.org/10.1159/000272812.

    Article  CAS  PubMed  Google Scholar 

  17. Krasnegor, N. A., Epstein, L., Johnson, S. B., & Yaffe, S. J. (1993). Developmental aspects of health compliance behavior. Hillsdale, NJ: Erlbaum.

    Google Scholar 

  18. Putnam, D. E., Finney, J. W., Barkley, P. L., & Bonner, M. J. (1994). Enhancing commitment improves adherence to a medical regimen. Journal of Consulting and Clinical Psychology, 62(1), 191–194. https://doi.org/10.1037/0022-006X.62.1.191.

    Article  CAS  PubMed  Google Scholar 

  19. Griffiths, M., Schweitzer, R., & Yates, P. (2011). Childhood experiences of cancer an interpretative phenomenological analysis approach. Journal of Pediatric Oncology Nursing, 28(2), 83–92. https://doi.org/10.1177/1043454210377902.

    Article  PubMed  Google Scholar 

  20. McCabe, M. A. (1996). Involving children and adolescents in medical decision making: developmental and clinical considerations. Journal of Pediatric Psychology, 21(4), 505–516. https://doi.org/10.1093/jpepsy/21.4.505.

    Article  CAS  PubMed  Google Scholar 

  21. Hamburg, B. A., & Inoff, G. E. (1982). Relationships between behavioral factors and diabetic control in children and adolescents: a camp study. Psychosomatic Medicine, 44(4), 321–339.

    Article  CAS  PubMed  Google Scholar 

  22. Geist, R., Grdisa, V., & Otley, A. (2003). Psychosocial issues in the child with chronic conditions. Best Practice & Research Clinical Gastroenterology, 17(2), 141–152. https://doi.org/10.1016/S1521-6918(02)00142-7.

    Article  Google Scholar 

  23. Hinds, P. S., Gattuso, J. S., Fletcher, A., Baker, E., Coleman, B., Jackson, T., et al. (2004). Quality of life as conveyed by pediatric patients with cancer. Quality of Life Research, 13(4), 761–772. https://doi.org/10.1023/B:QURE.0000021697.43165.87.

    Article  CAS  PubMed  Google Scholar 

  24. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd edn.). Thousand Oaks: SAGE Publications.

    Google Scholar 

  25. Recklitis, C. J., Parsons, S. K., Shih, M. C., Mertens, A., Robison, L. L., & Zeltzer, L. (2006). Factor structure of the brief symptom inventory–18 in adult survivors of childhood cancer: results from the childhood cancer survivor study. Psychological Assessment, 18(1), 22–32. https://doi.org/10.1037/1040-3590.18.1.22.

    Article  PubMed  Google Scholar 

  26. Shoshani, A., Mifano, K., & Czamanski-Cohen, J. (2016). The effects of the make a wish intervention on psychiatric symptoms and health-related quality of life of children with cancer: a randomised controlled trial. Quality of Life Research, 25(5), 1209–1218. https://doi.org/10.1007/s11136-015-1148-7.

    Article  PubMed  Google Scholar 

  27. Shoshani, A., & Slone, M. (2015). The resilience function of character strengths in the face of war and protracted conflict. Frontiers in psychology. https://doi.org/10.3389/fpsyg.2015.02006.

    PubMed  Google Scholar 

  28. Slone, M., Shoshani, A., & Paltieli, T. (2009). Psychological consequences of forced evacuation on children: Risk and protective factors. Journal of Traumatic Stress, 22(4), 340–343.

    Article  PubMed  Google Scholar 

  29. Ebesutani, C., Regan, J., Smith, A., Reise, S., Higa-McMillan, C., & Chorpita, B. F. (2012). The 10-item positive and negative affect schedule for children, child and parent shortened versions: application of item response theory for more efficient assessment. Journal of Psychopathology and Behavioral Assessment, 34(2), 191–203. https://doi.org/10.1007/s10862-011-9273-2.

    Article  Google Scholar 

  30. Central Bureau of Statistics. (2016). The statistical abstract of Israel. Jerusalem: CBS.

    Google Scholar 

  31. DiMatteo, M. R., Hays, R. D., Gritz, E. R., Bastani, R., Crane, L., Elashoff, R., et al. (1993). Patient adherence to cancer control regimens: Scale development and initial validation. Psychological Assessment, 5(1), 102–112. https://doi.org/10.1037/1040-3590.5.1.102.

    Article  Google Scholar 

  32. Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL™ 4.0: reliability and validity of the pediatric quality of life inventory™ version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.

    Article  CAS  PubMed  Google Scholar 

  33. Brown, T. A. (2006). Confirmatory factor analysis for applied research. Guilford: Guilford Press.

    Google Scholar 

  34. Glorfeld, L. W. (1995). An improvement on Horn’s parallel analysis methodology for selecting the correct number of factors to retain. Educational and Psychological Measurement, 55, 377–393.

    Article  Google Scholar 

  35. Murie, J.,Ross, A., & Rich, D.(2006).Exploring post-myocardial infarction patients’ perceptions of patient-mediated interventions for the secondary prevention of coronary heart disease (SIGN Guideline 41).Quality in Primary Care, 14(2), 77–83.

    Google Scholar 

  36. Kiley, D. J., Lam, C. S., & Pollak, R. (1993). A study of treatment compliance following kidney transplantation. Transplantation, 55(1), 51–56.

    Article  CAS  PubMed  Google Scholar 

  37. Koocher, G. P. (1986). Psychosocial issues during the acute treatment of pediatric cancer. Cancer, 58, 468–472.

    Article  CAS  PubMed  Google Scholar 

  38. Thompson, A. G. (2007). The meaning of patient involvement and participation in health care consultations: a taxonomy. Social Science & Medicine, 64(6), 1297–1310. https://doi.org/10.1016/j.socscimed.2006.11.002.

    Article  Google Scholar 

  39. Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research, 10(4), 347–357.

    Article  CAS  PubMed  Google Scholar 

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Author notes

    Authors and Affiliations

    1. Baruch Ivcher School of Psychology, Interdisciplinary Center (IDC) Herzliya, Herzliya, Israel

      Anat Shoshani & Yaniv Kanat-Maymon

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    1. Anat Shoshani
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    2. Yaniv Kanat-Maymon
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    Correspondence to Anat Shoshani or Yaniv Kanat-Maymon.

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    The authors declare that they have no conflict of interest.

    Ethical approval

    All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

    Informed consent

    Informed consent was obtained from all individual participants included in the study.

    Additional information

    Anat Shoshani and Yaniv Kanat-Maymon have contributed equally to this work.

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    Shoshani, A., Kanat-Maymon, Y. Involvement in care in pediatric cancer patients: implications for treatment compliance, mental health and health-related quality of life. Qual Life Res 27, 567–575 (2018). https://doi.org/10.1007/s11136-017-1744-9

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