Psychosocial Intervention Programs for Parents of Children with Cancer: A Systematic Review and Critical Comparison of Programs’ Models and Development
Intervention programs have been developed to help parents cope with their child’s cancer. Despite some studies reporting a high level of evidence, it is unclear how these programs build on each other. Appraising models of change is critical to advance scientific knowledge and provide evidence-based interventions. This review aims to identify existing programs, explicitly formulate their underlying models, evaluate how they translate into concrete activities, as well as identify and discuss their development process. Eleven programs based on models of change from cognitive-behavioral, systemic and counselling theories were identified. Many models included a sound theoretical framework, targeted outcomes, as well as implementation strategies. In most cases, preliminary development studies were conducted, but details were rarely provided on how development stages informed the redesign of intervention programs. Acceptability and treatment fidelity were not available for one-third of the programs. Future reports should document the development and design redesign stages prior to conducting efficacy trials, as this step would provide crucial details to critically appraise programs.
KeywordsPediatric cancer Parents Psychosocial Intervention program Systematic review
We thank the authors of these programs for sharing unpublished documents, the reviewers for their suggestions for improving the manuscript, and the members of our laboratory, J. Aramideh, A. Anestin and K. Lamore for their proofreading.
This work was supported by Charles-Bruneau Cancer Care Centre Foundation and CHU Sainte-Justine Foundation. The funding was made possible through a donation of Sobeys-Plaisir de mieux manger Foundation to DS, VM, SD, and SS. DO is a recipient of a post-doctoral fellowship from the Fonds de la Recherche du Québec—Santé. the Sainte-Justine Foundation, Montreal, Canada.
Compliance with Ethical Standards
Conflict of interest
David Ogez, Katherine Péloquin, Laurence Bertout, Claude-Julie Bourque, Daniel Curnier, Simon Drouin, Caroline Laverdière, Valérie Marcil, Rebeca Ribeiro, Melissa Callaci, Emélie Rondeau, Daniel Sinnett, and Serge Sultan declare that they have no conflict of interest.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human participants or animals performed by any of the authors.
- APA. (2000a). Practice guidelines for the treatment of patients with major depressive disorder (revision). American Journal of Psychiatry, 157(Supplement), 1–45.Google Scholar
- Askins, M. A., Sahler, O. J., Sherman, S. A., Fairclough, D. L., Butler, R. W., Katz, E. R., … Phipps, S. (2009). Report from a multi-institutional randomized clinical trial examining computer-assisted problem-solving skills training for English- and Spanish-speaking mothers of children with newly diagnosed cancer. Journal of Pediatrics Psychology, 34(5), 551–563. https://doi.org/10.1093/jpepsy/jsn124.CrossRefGoogle Scholar
- Barlow, D. H., Bullis, J. R., Comer, J. S., & Ametaj, A. A. (2013). Evidence-based psychological treatments: An update and a way forward. Annual Review of Clinical Psychology, 9, 1–27. https://doi.org/10.1146/annurev-clinpsy-050212-185629.CrossRefPubMedGoogle Scholar
- Barrera, M., Atenafu, E., Andrews, G. S., & Saunders, F. (2008). Factors related to changes in cognitive, educational and visual motor integration in children who undergo hematopoietic stem cell transplant. Journal of Pediatrics Psychology, 33(5), 536–546. https://doi.org/10.1093/jpepsy/jsm080.CrossRefGoogle Scholar
- Bellg, A. J., Borrelli, B., Resnick, B., Hecht, J., Minicucci, D. S., Ory, M., … Czajkowski, S. (2004). Enhancing treatment fidelity in health behavior change studies: Best practices and recommendations from the NIH Behavior Change Consortium. Health Psychology, 23(5), 443–451. https://doi.org/10.1037/0278-618.104.22.1683.CrossRefPubMedGoogle Scholar
- Canadian Cancer Society. (s.d.). Retrieved February 10, 2018, from http://www.cancer.ca/en/?region=qc.
- Cernvall, M., Carlbring, P., Ljungman, G., & von Essen, L. (2013). Guided self-help as intervention for traumatic stress in parents of children with cancer: Conceptualization, intervention strategies, and a case study. Journal of Psychosocial Oncology, 31(1), 13–29. https://doi.org/10.1080/07347332.2012.741095.CrossRefPubMedGoogle Scholar
- Cernvall, M., Carlbring, P., Wikman, A., Ljungman, L., Ljungman, G., & von Essen, L. (2017). Twelve-month follow-up of a randomized controlled trial of internet-based guided self-help for parents of children on cancer treatment. Journal of Medical Internet Research, 19(7), e273. https://doi.org/10.2196/jmir.6852.CrossRefPubMedPubMedCentralGoogle Scholar
- Czajkowski, S. M., Powell, L. H., Adler, N., Naar-King, S., Reynolds, K. D., Hunter, C. M., … Charlson, M. E. (2015). From ideas to efficacy: The ORBIT model for developing behavioral treatments for chronic diseases. Health Psychology, 34(10), 971–982. https://doi.org/10.1037/hea0000161.CrossRefPubMedPubMedCentralGoogle Scholar
- Fedele, D. A., Hullmann, S. E., Chaffin, M., Kenner, C., Fisher, M. J., Kirk, K., … Mullins, L. L. (2013). Impact of a parent-based interdisciplinary intervention for mothers on adjustment in children newly diagnosed with cancer. Journal of Pediatric Psychology, 38(5), 531–540. https://doi.org/10.1093/jpepsy/jst010.CrossRefPubMedPubMedCentralGoogle Scholar
- Hall, J., Kellett, S., Berrios, R., Bains, M. K., & Scott, S. (2016). Efficacy of cognitive behavioral therapy for generalized anxiety disorder in older adults: Systematic review, meta-analysis, and meta-regression. The American Journal of Geriatric Psychiatry, 24(11), 1063–1073. https://doi.org/10.1016/j.jagp.2016.06.006.CrossRefPubMedGoogle Scholar
- Herschell, A. D., Kolko, D. J., Baumann, B. L., & Davis, A. C. (2010). The role of therapist training in the implementation of psychosocial treatments: A review and critique with recommendations. Clinical Psychology Review, 30(4), 448–466. https://doi.org/10.1016/j.cpr.2010.02.005.CrossRefPubMedPubMedCentralGoogle Scholar
- Hoekstra-Weebers, J. E. H. M., Heuvel, F., Jaspers, J. P. C., Kamps, W. A., & Klip, E. C. (1998). Brief report: An intervention program for parents of pediatric cancer patients: A randomized controlled trial. Journal of Pediatric Psychology, 23(3), 207–214. https://doi.org/10.1093/jpepsy/23.3.207.CrossRefPubMedGoogle Scholar
- Hoff, A. L., Mullins, L. L., Gillaspy, S. R., Page, M. C., Van Pelt, J. C., & Chaney, J. M. (2005). An intervention to decrease uncertainty and distress among parents of children newly diagnosed with diabetes: A pilot study. Families, Systems, & Health, 25, 329–342. https://doi.org/10.1037/1091-7522.214.171.1249.CrossRefGoogle Scholar
- Kazak, A., Rourke, M., & Crump, T. (2003). Families and other systems in pediatric psychology. In M. Roberts (Ed.), Handbook of pediatric psychology (3rd ed.). New York: Guilford.Google Scholar
- Kazak, A. E., Alderfer, M. A., Streisand, R., Simms, S., Rourke, M. T., Barakat, L. P., … Cnaan, A. (2004). Treatment of posttraumatic stress symptoms in adolescent survivors of childhood cancer and their families: A randomized clinical trial. Journal of Family Psychology: JFP: Journal of the Division of Family Psychology of the American Psychological Association (Division 43), 18(3), 493–504.CrossRefGoogle Scholar
- Kazak, A. E., & Simms, S. (1996). Family systems intervention in neuropediatric disorders. In C. Cofee & R. Brumback (Eds.), Textbook of pediatric neuropsychiatry (pp. 114–1464). Washington DC: American Psyhiatric Press.Google Scholar
- Kazak, A. E., Simms, S., Alderfer, M., Rourke, M., Crump, T., McClure, K., … Reilly, A. (2005). Feasibility and preliminary outcomes from a pilot study of a brief psychological intervention for families of children newly diagnosed with cancer. Journal of Pediatric Psychology, 30(8), 644–655. https://doi.org/10.1093/jpepsy/jsi051.CrossRefPubMedGoogle Scholar
- Kazak, A. E., Simms, S., Barakat, L., Hobbie, W., Foley, B., Golomb, V., & Best, M. (1999). Surviving cancer competently intervention program (SCCIP): A cognitive-behavioral and family therapy intervention for adolescent survivors of childhood cancer and their families. Family Process, 38(2), 175–191.CrossRefGoogle Scholar
- Kazdin, A. E. (2005). Social validity. In B. Everitt & D. Howell (Eds.), Encyclopedia of statistics in behavioral science. New york: Wiley.Google Scholar
- Kazdin, A. E. (2007). Mediators and mechanisms of change in psychotherapy research. Annual Review of Clinical Psychology, 3, 1–27. https://doi.org/10.1146/annurev.clinpsy.3.022806.091432.CrossRefGoogle Scholar
- Klassen, A. F., Gulati, S., Watt, L., Banerjee, A. T., Sung, L., Klaassen, R. J., … Shaw, N. (2012). Immigrant to Canada, newcomer to childhood cancer: A qualitative study of challenges faced by immigrant parents. Psycho-Oncology, 21(5), 558–562. https://doi.org/10.1002/pon.1963.CrossRefPubMedGoogle Scholar
- Manne, S. (2009). Parent social-cognitive processing intervention program: Manual (unpublished).Google Scholar
- Manne, S. (2010). Parent social-cognitive processing intervention program: Parent workbook (unpublished).Google Scholar
- Manne, S., Mee, L., Bartell, A., Sands, S., & Kashy, D. A. (2016). A randomized clinical trial of a parent-focused social-cognitive processing intervention for caregivers of children undergoing hematopoetic stem cell transplantation. Journal of Consulting and Clinical Psychology, 84(5), 389–401. https://doi.org/10.1037/ccp0000087.CrossRefPubMedPubMedCentralGoogle Scholar
- Mishel, M. (1988). Uncertainty in illness. Image: Journal of Nursing Scholarship, 20, 225–232.Google Scholar
- Moher, D., Liberati, A., Tetzlaff, J., & Douglas, G. A. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA Statement. PLoS Medecine, 6(7), 1–6.Google Scholar
- Mullins, L. L., Fedele, D. A., Chaffin, M., Hullmann, S. E., Kenner, C., Eddington, A. R., … McNall-Knapp, R. Y. (2012). A clinic-based interdisciplinary intervention for mothers of children newly diagnosed with cancer: A pilot study. Journal of Pediatric Psychology, 37(10), 1104–1115. https://doi.org/10.1093/jpepsy/jss093.CrossRefPubMedPubMedCentralGoogle Scholar
- National Cancer Institute. (s.d.). Retrieved December 15, 2017, from https://rtips.cancer.gov/rtips/index.do.
- Nezu, A. M., Nezu, C. M., & D’Zurilla, T. (2013). Problem-solving therapy: A treatment manual. New-York: Springer.Google Scholar
- Ostroff, J. S., & Steinglass, P. (1996). (1996). Psychosocial adaptation following treatment: A family systems perspective on cancer survivorship. In C. L. Cooper, & A. Kaplan De-Nour (Eds.), Cancer and the family (pp. 129–147). New York: Wiley.Google Scholar
- Sahler, O. J., Askins, M. A., Dolgin, M. J., Fairclough, D. L., Katz, D. L., Noll, R. B., & Phipps, S. (2015). Bright ideas, problem-solving skills training in childhood cancer: Caregiver’s manual (unpublished).Google Scholar
- Sahler, O. J., Askins, M. A., Dolgin, M. J., Fairclough, D. L., Katz, D. L., Noll, R. B., & Phipps, S. (2016). Bright ideas, problem-solving skills training in childhood cancer: Instructors’ manual (unpublished).Google Scholar
- Sahler, O. J., Dolgin, M. J., Phipps, S., Fairclough, D. L., Askins, M. A., Katz, E. R., … Butler, R. W. (2013). Specificity of problem-solving skills training in mothers of children newly diagnosed with cancer: Results of a multisite randomized clinical trial. Journal of Clinical Oncology, 31(10), 1329–1335. https://doi.org/10.1200/JCO.2011.39.1870.CrossRefPubMedPubMedCentralGoogle Scholar
- Sahler, O. J., Fairclough, D. L., Phipps, S., Mulhern, R. K., Dolgin, M. J., Noll, R. B., … Butler, R. W. (2005). Using problem-solving skills training to reduce negative affectivity in mothers of children with newly diagnosed cancer: Report of a multisite randomized trial. Journal of Consulting Clinical Psychology, 73(2), 272–283. https://doi.org/10.1037/0022-006X.73.2.272.CrossRefPubMedGoogle Scholar
- Sahler, O. J., Varni, J. W., Fairclough, D. L., Butler, R. W., Noll, R. B., Dolgin, M. J., … Mulhern, R. K. (2002). Problem-solving skills training for mothers of children with newly diagnosed cancer: A randomized trial. Journal of Developmental and Behavioral Pediatrics, 23(2), 77–86. https://doi.org/10.1097/00004703-200204000-00003.CrossRefPubMedGoogle Scholar
- Santacroce, S. J., Asmus, K., Kadan-Lottick, N., & Grey, M. (2010). Feasibility and preliminary outcomes from a pilot study of coping skills training for adolescent-young adult survivors of childhood cancer and their parents. Journal of Pediatric Oncology Nursing, 27(1), 10–20. https://doi.org/10.1177/1043454209340325.CrossRefGoogle Scholar
- Spinetta, J. J., Masera, G., Eden, T., Oppenheim, D., Martins, A. G., van Dongen-Melman, J., … Jankovic, M. (2002). Refusal, non-compliance, and abandonment of treatment in children and adolescents with cancer: A report of the SIOP Working Committee on Phychosocial Issues in Pediatric Oncology. Medical and Pediatric Oncology, 38(2), 114–117.CrossRefGoogle Scholar
- Stehl, M. L., Kazak, A. E., Alderfer, M. A., Rodriguez, A., Hwang, W.-T., Pai, A. L., … Reilly, A. (2009). Conducting a randomized clinical trial of an psychological intervention for parents/caregivers of children with cancer shortly after diagnosis. Journal of Pediatric Psychology, 34(8), 803–816. https://doi.org/10.1093/jpepsy/jsn130.CrossRefPubMedGoogle Scholar
- Tremolada, M., Bonichini, S., Schiavo, S., & Pillon, M. (2012). Post-traumatic stress symptoms in mothers of children with leukaemia undergoing the first 12 months of therapy: Predictive models. Psychology & Health, 27(12), 1448–1462. https://doi.org/10.1080/08870446.2012.690414.CrossRefGoogle Scholar
- Ussher, J. M., Perz, J., Hawkins, Y., & Brack, M. (2009). Evaluating the efficacy of psycho-social interventions for informal carers of cancer patients: A systematic review of the research literature. Health Psychology Review, 3(1), 85–107. https://doi.org/10.1080/17437190903033401.CrossRefGoogle Scholar
- Wakefield, C. E., Sansom-Daly, U. M., McGill, B. C., Ellis, S. J., Doolan, E. L., Robertson, E. G., … Cohn, R. J. (2016). Acceptability and feasibility of an e-mental health intervention for parents of childhood cancer survivors: “Cascade”. Supportive Care in Cancer, 24(6), 2685–2694. https://doi.org/10.1007/s00520-016-3077-6.CrossRefPubMedGoogle Scholar
- Wakefield, C. E., Sansom-Daly, U. M., McGill, B. C., McCarthy, M., Girgis, A., Grootenhuis, M., … Cohn, R. J. (2015). Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: Study protocol for a randomised controlled trial. Trials, 16(1), 153. https://doi.org/10.1186/s13063-015-0681-6.CrossRefPubMedPubMedCentralGoogle Scholar
- Warner, C. M., Ludwig, K., Sweeney, C., Spillane, C., Hogan, L., Ryan, J., & Carroll, W. (2011). Treating persistent distress and anxiety in parents of children with cancer: An initial feasibility trial. Journal of Pediatric Oncology Nursing, 28(4), 224–230. https://doi.org/10.1177/1043454211408105.CrossRefPubMedGoogle Scholar
- Wiener, L., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M. J. (2015). Standards for the psychosocial care of children with cancer and their families: An introduction to the special issue. Pediatric Blood Cancer, 62(Suppl 5), 419–424. https://doi.org/10.1002/pbc.25675.CrossRefGoogle Scholar
- Yagci-Kupeli, B., Akyuz, C., Kupeli, S., & Buyukpamukcu, M. (2012). Health-related quality of life in pediatric cancer survivors: A multifactorial assessment including parental factors. Journal of Pediatric Hematology and Oncology, 34(3), 194–199. https://doi.org/10.1097/MPH.0b013e3182467f5f.CrossRefGoogle Scholar
- Young, J., Klosko, J., & Weishaar, M. (2005). Shema therapy. A practitioner’s guide. New-York: Guilford Press.Google Scholar