The Psychosocial Burden of Families with Childhood Blood Cancer

Florencia Borrescio-Higa, Nieves Valdés, Florencia Borrescio-Higa, Nieves Valdés

Abstract

Cancer is the second leading cause of death for children, and leukemias are the most common pediatric cancer diagnoses in Chile. Childhood cancer is a traumatic experience and is associated with distress, pain, and other negative experiences for patients and their families. Thus, psychosocial costs represent a large part of the overall burden of cancer. This study examines psychosocial experiences in a sample of 90 families of children with blood-related cancer in Chile. We provide a global overview of the family experience, focusing on patients, caregivers, and siblings. We find that most families report a negative impact upon diagnosis; disruptions in family dynamics; a range of negative feelings of the patient, such as depression, discouragement, and irritability; and difficulty with social lives. Additionally, they report negative effects in the relationship between the siblings of the patient and their parents, and within their caregivers' spouse/partner relationship, as well as a worsening of the economic condition of the primary caregiver. Furthermore, over half of the families in the sample had to move due to diagnosis and/or treatment. Promoting interventions that can help patients, siblings, and parents cope with distress and promote resilience and well-being are important.

Keywords: caregiver; childhood cancer; psychosocial cost; siblings; well-being.

Conflict of interest statement

The authors declare no conflict of interest. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.

Figures

Figure 1
Figure 1
Negative emotional impact on the patient.
Figure 2
Figure 2
Primary caregivers’ activities related to the patients’ treatment.
Figure 3
Figure 3
Impact on the primary caregivers’ spouse/partner relationships.
Figure 4
Figure 4
Relationship between the negative impact of the disease on the patients, siblings, primary caregiver, and families.

References

    1. Ministerio de Salud Primer Informe del Registro Nacional de Cáncer Infantil de Chile (Menores de 15 años), RENCI; 2018. [(accessed on 30 October 2021)]. Available online: .
    1. De Oliveira C., Bremner K.E., Liu N., Greenberg M.L., Nathan P.C., McBride M.L., Krahn M.D. Costs of cancer care in children and adolescents in Ontario, Canada. Pediatric Blood Cancer. 2017;64:1–11. doi: 10.1002/pbc.26628.
    1. Price R.A., Stranges E., Elixhauser A. Healthcare Cost and Utilization Project (HCUP) Statistical Briefs. Volume 132. Agency for Helthcare Research and Quiality; Rockville, MD, USA: 2012. [(accessed on 30 October 2021)]. Pediatric Cancer Hospitalizations, 2009: Statistical Brief #132. Available online:
    1. Russell H.V., Panchal J., VonVille H., Franzini L., Swint J.M. Economic Evaluation of Pediatric Cancer Treatment: A Systematic Literature Review. Pediatrics. 2013;131:e273–e287. doi: 10.1542/peds.2012-0912.
    1. Borrescio-Higa F., Valdés N. Medical Cost of Cancer Care for Privately Insured Children in Chile. Int. J. Environ. Res. Public Health. 2021;18:6746. doi: 10.3390/ijerph18136746.
    1. Tsimicalis A., Stevens B., Ungar W.J., McKeever P., Greenberg M. The cost of childhood cancer from the family’s perspective: A critical review. Pediatric Blood Cancer. 2011;56:707–717. doi: 10.1002/pbc.22685.
    1. Atun R., Bhakta N., Denburg A., Frazier A.L., Friedrich P., Gupta S., Lam C.G., Ward Z.J., Yeh J.M., Allemani C., et al. Sustainable care for children with cancer: A Lancet Oncology Commission. Lancet Oncol. 2020;21:e185–e224. doi: 10.1016/S1470-2045(20)30022-X.
    1. Essue B.M., Iragorri N., Fitzgerald N., de Oliveira C. The psychosocial cost burden of cancer: A systematic literature review. Psycho-Oncology. 2020;29:1746–1760. doi: 10.1002/pon.5516.
    1. Warner B.E.L., Kirchhoff A.C., Nam G.E., Fluchel M. Financial Burden of Pediatric Cancer for Patients and Their Families. J. Oncol. Pract. 2014;11:12–18. doi: 10.1200/JOP.2014.001495.
    1. Schepers S.A., Sint Nicolaas S.M., Maurice-Stam H., Haverman L., Verhaak C.M., Grootenhuis M.A. Parental distress 6 months after a pediatric cancer diagnosis in relation to family psychosocial risk at diagnosis. Cancer. 2018;124:381–390. doi: 10.1002/cncr.31023.
    1. Steele A.C., Mullins L.L., Mullins A.J., Muriel A.C. Psychosocial Interventions and Therapeutic Support as a Standard of Care in Pediatric Oncology. Pediatric Blood Cancer. 2015;62:S585–S618. doi: 10.1002/pbc.25701.
    1. Kazak A.E., Boeving C.A., Alderfer M.A., Hwang W.T., Reilly A. Posttraumatic stress symptoms during treatment in parents of children with cancer. J. Clin. Oncol. 2005;23:7405–7410. doi: 10.1200/JCO.2005.09.110.
    1. Kazak A.E., Alderfer M., Rourke M.T., Simms S., Streisand R., Grossman J.R. Posttraumatic Stress Disorder (PTSD) and Posttraumatic Stress Symptoms (PTSS) in families of adolescent childhood cancer survivors. J. Pediatric Psychol. 2004;29:211–219. doi: 10.1093/jpepsy/jsh022.
    1. Pöder U., Ljungman G., von Essen L. Posttraumatic stress disorder among parents of children on cancer treatment: A longitudinal study. Psycho-Oncology. 2008;17:430–437. doi: 10.1002/pon.1263.
    1. Vrijmoet-Wiersma C.M.J., Van Klink J.M.M., Kolk A.M., Koopman H.M., Ball L.M., Maarten Egeler R. Assessment of parental psychological stress in pediatric cancer: A review. J. Pediatric Psychol. 2008;33:694–706. doi: 10.1093/jpepsy/jsn007.
    1. Kearney J.A., Salley C.G., Muriel A.C. Standards of Psychosocial Care for Parents of Children with Cancer. Pediatric Blood Cancer. 2015;62:S632–S683. doi: 10.1002/pbc.25761.
    1. Rosenberg A.R., Dussel V., Kang T., Geyer J.R., Gerhardt C.A., Feudtner C., Wolfe J. Psychological Distress in Parents of Children With Advanced Cancer. JAMA Pediatrics. 2013;167:537. doi: 10.1001/jamapediatrics.2013.628.
    1. Alderfer M.A., Long K.A., Lown E.A., Marsland A.L., Ostrowski N.L., Hock J.M., Ewing L.J. Psychosocial adjustment of siblings of children with cancer: A systematic review. Psycho-Oncology. 2010;19:789–805. doi: 10.1002/pon.1638.
    1. Kaplan L.M., Kaal K.J., Bradley L., Alderfer M.A. Cancer-related traumatic stress reactions in siblings of children with cancer. Fam. Syst. Health. 2013;31:205–217. doi: 10.1037/a0032550.
    1. Pardo C., Schott W. Health insurance selection in Chile: A cross-sectional and panel analysis. Health Policy Plan. 2014;29:302–312. doi: 10.1093/heapol/czt017.
    1. Soto R., Torche A. Spatial inequality, migration and economic growth in Chile. Cuad. Econ. 2004;41:401–424.
    1. Agostini C.A., Hojman D., Román A., Valenzuela L. Segregación residencial de ingresos en el Gran Santiago, 1992-2002: Una estimación robusta. EURE. 2016;42:159–184. doi: 10.4067/S0250-71612016000300007.
    1. Instituto Nacional de Estadísticas . Síntesis Resultados Censo 2017. Instituto Nacional de Estadísticas; Santiago, Chile: 2018. [(accessed on 30 October 2021)]. Available online: .
    1. Bakula D.M., Sharkey C.M., Perez M.N., Espeleta H.C., Gamwell K.L., Baudino M., Delozier A.M., Chaney J.M., Matt Alderson R., Mullins L.L. Featured Article: The Relationship between Parent and Child Distress in Pediatric Cancer: A Meta-Analysis. J. Pediatric Psychol. 2019;44:1121–1136. doi: 10.1093/jpepsy/jsz051.
    1. Peterson R.K., Ashford J.M., Scott S.M., Wang F., Zhang H., Bradley J.A., Merchant T.E., Conklin H.M. Predicting parental distress among children newly diagnosed with craniopharyngioma. Pediatric Blood Cancer. 2018;65:e27287. doi: 10.1002/pbc.27287.
    1. Creswell P.D., Wisk L.E., Litzelman K., Allchin A., Witt W.P. Parental depressive symptoms and childhood cancer: The importance of financial difficulties. Supportive Care Cancer. 2014;22:503–511. doi: 10.1007/s00520-013-2003-4.
    1. Roser K., Erdmann F., Michel G., Winther J.F., Mader L. The impact of childhood cancer on parents’ socio-economic situation—A systematic review. Psycho-Oncology. 2019;28:1207–1226. doi: 10.1002/pon.5088.
    1. Frankham C., Richardson T., Maguire N. Psychological factors associated with financial hardship and mental health: A systematic review. Clin. Psychol. Rev. 2020;77:101832. doi: 10.1016/j.cpr.2020.101832.
    1. Pai A.L.H., Greenley R.N., Lewandowski A., Drotar D., Youngstrom E., Peterson C.C. A meta-analytic review of the influence of pediatric cancer on parent and family functioning. J. Fam. Psychol. 2007;21:407–415. doi: 10.1037/0893-3200.21.3.407.
    1. Gerali M., Servitzoglou M., Paikopoulou D., Theodosopoulou H., Madianos M., Vasilatou-Kosmidis H. Psychological Problems in Children with Cancer in the Initial Period of Treatment. Cancer Nurs. 2011;34:269–276. doi: 10.1097/NCC.0b013e3181fa5698.
    1. Kunin-Batson A.S., Lu X., Balsamo L., Graber K., Devidas M., Hunger S.P., Carroll W.L., Winick N.J., Mattano L.A., Maloney K.W., et al. Prevalence and predictors of anxiety and depression after completion of chemotherapy for childhood acute lymphoblastic leukemia: A prospective longitudinal study. Cancer. 2016;122:1608–1617. doi: 10.1002/cncr.29946.
    1. Myers R.M., Balsamo L., Lu X., Devidas M., Hunger S.P., Carroll W.L., Winick N.J., Maloney K.W., Kadan-Lottick N.S. A prospective study of anxiety, depression, and behavioral changes in the first year after a diagnosis of childhood acute lymphoblastic leukemia. Cancer. 2014;120:1417–1425. doi: 10.1002/cncr.28578.
    1. Guzman C.P.C., Cordoba M.A., Godoy N., Castaño A., Ribeiro K.B., Moreno F., de Vries E., Guzman P.C., Cordoba M.A., Godoy N., et al. Childhood cancer in Latin America: From detection to palliative care and survivorship. Cancer Epidemiol. 2021;71:101837. doi: 10.1016/j.canep.2020.101837.
    1. Toledano-toledano F., Luna D., De M., Mart S., Alberto C., Salazar M., Jos M. Psychosocial Factors Predicting Resilience in Family Caregivers of Children with Cancer: A Cross-Sectional Study. Int. J. Environ. Res. Public Health. 2021;18:748. doi: 10.3390/ijerph18020748.
    1. Hong H., Min A., Choi S. Living with the late effects of childhood cancer treatment: A descriptive qualitative study. Int. J. Environ. Res. Public Health. 2021;18:8392. doi: 10.3390/ijerph18168392.
    1. Kim Y., Lee K.-S., Koh K.-N. Difficulties faced by long-term childhood cancer survivors: A qualitative study. Eur. J. Oncol. Nurs. 2018;36:129–134. doi: 10.1016/j.ejon.2018.08.003.
    1. Rosenberg A.R., Bradford M.C., Junkins C.C., Taylor M., Zhou C., Sherr N., Kross E., Curtis J.R., Yi-Frazier J.P. Effect of the Promoting Resilience in Stress Management Intervention for Parents of Children with Cancer (PRISM-P): A Randomized Clinical Trial. JAMA Netw. Open. 2019;2:1–14. doi: 10.1001/jamanetworkopen.2019.11578.
    1. Mueller E.L., Hall M., Berry J.G., Carroll A.E., Macy M.L. Healthcare utilization and spending by children with cancer on Medicaid. Pediatric Blood Cancer. 2017;64:1–6. doi: 10.1002/pbc.26569.
    1. Okado Y., Tillery R., Howard Sharp K., Long A.M., Phipps S. Effects of time since diagnosis on the association between parent and child distress in families with pediatric cancer. Child. Health Care. 2016;45:303–322. doi: 10.1080/02739615.2014.996883.

Source: PubMed

Sponsorit ja yhteistyökumppanit

Sairaudet

Huumeiden interventiot

3
Tilaa