Integrated Psychological Services in Pediatric Oncology: Caregiver Perspectives at Diagnosis

Overview

Journal Cancers (Basel)

Publisher MDPI

Specialty Oncology

Date 2024 Sep 28

PMID 39335108

Authors

Emily Bernstein

Anna M Jones

Niki Jurbergs

Jennifer L Harman

Sean Phipps

R Elyse Heidelberg

Affiliations

Soon will be listed here.

Abstract

Background/objectives: Pediatric oncology patients and families are at risk for increased distress at diagnosis. The New Oncology Program in Psychology (NOPP) aligns psychological care with the established standards of care at diagnosis. This project aimed to evaluate NOPP and understand the differences between caregivers' perceptions of feeling informed and prepared to navigate psychosocial concerns for those who did and did not receive psychological services at diagnosis.

Methods: A survey was administered via a virtual platform. Frequency analyses summarize caregiver experiences and concerns. Mann-Whitney U tests assess the differences in caregiver knowledge and preparedness between caregivers who did and did not receive psychological services.

Results: Caregivers reported difficult emotions at diagnosis and expressed concern for the impact of diagnosis and treatment across broad domains of patient functioning. Caregivers of patients who received psychology consultation felt more informed about difficult emotions and how these may change over time. They felt more prepared and equipped with strategies to manage difficult emotions. Caregivers of patients who completed a cognitive assessment also felt more informed and prepared regarding the potential effects of the diagnosis and treatment on patient cognitive/academic functioning.

Conclusions: Psychological services were associated with caregivers' positive perceptions surrounding the management of difficult emotions and with their knowledge regarding the cognitive/academic impact. The results inform the ongoing modification of NOPP.

Citing Articles

Prevalence of Anxiety and Depression among Parents of Children with Cancer-A Preliminary Study.

Lewandowska A, Lewandowski T, Bartosiewicz A, Papp K, Zrubcova D, Supinova M Children (Basel). 2024; 11(10).

PMID: 39457192 PMC: 11505657. DOI: 10.3390/children11101227.

References

Harlan L, Lynch C, Keegan T, Hamilton A, Wu X, Kato I . Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv. 2011; 5(3):305-14. PMC: 3159756. DOI: 10.1007/s11764-011-0173-y. View

Deatrick J, Kazak A, Scialla M, Madden R, McDonnell G, Okonak K . Advancing health equity in pediatric cancer through implementation of universal family psychosocial risk screening. Psychooncology. 2022; 31(9):1483-1490. DOI: 10.1002/pon.5978. View

Edge D, Lemetyinen H . Psychology across cultures: Challenges and opportunities. Psychol Psychother. 2019; 92(2):261-276. DOI: 10.1111/papt.12229. View

Kazak A, Abrams A, Banks J, Christofferson J, DiDonato S, Grootenhuis M . Psychosocial Assessment as a Standard of Care in Pediatric Cancer. Pediatr Blood Cancer. 2015; 62 Suppl 5:S426-59. DOI: 10.1002/pbc.25730. View

Cox L, Kenney A, Harman J, Jurbergs N, Molnar Jr A, Willard V . Psychosocial Functioning of Young Children Treated for Cancer: Findings From a Clinical Sample. J Pediatr Oncol Nurs. 2019; 36(1):17-23. DOI: 10.1177/1043454218813905. View

Misra S, Jackson V, Chong J, Choe K, Tay C, Wong J . Systematic Review of Cultural Aspects of Stigma and Mental Illness among Racial and Ethnic Minority Groups in the United States: Implications for Interventions. Am J Community Psychol. 2021; 68(3-4):486-512. DOI: 10.1002/ajcp.12516. View

Myers R, Balsamo L, Lu X, Devidas M, Hunger S, Carroll W . A prospective study of anxiety, depression, and behavioral changes in the first year after a diagnosis of childhood acute lymphoblastic leukemia: a report from the Children's Oncology Group. Cancer. 2014; 120(9):1417-25. PMC: 4319360. DOI: 10.1002/cncr.28578. View

Patenaude A, Kupst M . Psychosocial functioning in pediatric cancer. J Pediatr Psychol. 2004; 30(1):9-27. DOI: 10.1093/jpepsy/jsi012. View

Brand S, Wolfe J, Samsel C . The Impact of Cancer and its Treatment on the Growth and Development of the Pediatric Patient. Curr Pediatr Rev. 2016; 13(1):24-33. PMC: 5503788. DOI: 10.2174/1573396313666161116094916. View

10.

Thompson A, Young-Saleme T . Anticipatory Guidance and Psychoeducation as a Standard of Care in Pediatric Oncology. Pediatr Blood Cancer. 2015; 62 Suppl 5:S684-93. DOI: 10.1002/pbc.25721. View

11.

Schepers S, Sint Nicolaas S, Maurice-Stam H, Haverman L, Verhaak C, Grootenhuis M . Parental distress 6 months after a pediatric cancer diagnosis in relation to family psychosocial risk at diagnosis. Cancer. 2017; 124(2):381-390. DOI: 10.1002/cncr.31023. View

12.

Steele A, Mullins L, Mullins A, Muriel A . Psychosocial Interventions and Therapeutic Support as a Standard of Care in Pediatric Oncology. Pediatr Blood Cancer. 2015; 62 Suppl 5:S585-618. DOI: 10.1002/pbc.25701. View

13.

McCubbin H, Thompson E, Thompson A, McCubbin M, Kaston A . Culture, ethnicity, and the family: critical factors in childhood chronic illnesses and disabilities. Pediatrics. 1993; 91(5 Pt 2):1063-70. View

14.

Maloney R, Clay D, Robinson J . Sociocultural issues in pediatric transplantation: a conceptual model. J Pediatr Psychol. 2005; 30(3):235-46. DOI: 10.1093/jpepsy/jsi034. View

15.

Wiener L, Kazak A, Noll R, Patenaude A, Kupst M . Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue. Pediatr Blood Cancer. 2015; 62 Suppl 5:S419-24. PMC: 6397048. DOI: 10.1002/pbc.25675. View

16.

Siegel R, Giaquinto A, Jemal A . Cancer statistics, 2024. CA Cancer J Clin. 2024; 74(1):12-49. DOI: 10.3322/caac.21820. View

17.

Katz L, Fladeboe K, King K, Gurtovenko K, Kawamura J, Friedman D . Trajectories of child and caregiver psychological adjustment in families of children with cancer. Health Psychol. 2018; 37(8):725-735. PMC: 6091867. DOI: 10.1037/hea0000619. View

18.

Price J, Kassam-Adams N, Alderfer M, Christofferson J, Kazak A . Systematic Review: A Reevaluation and Update of the Integrative (Trajectory) Model of Pediatric Medical Traumatic Stress. J Pediatr Psychol. 2015; 41(1):86-97. DOI: 10.1093/jpepsy/jsv074. View

19.

Zebrack B, Corbett V, Embry L, Aguilar C, Meeske K, Hayes-Lattin B . Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis. Psychooncology. 2014; 23(11):1267-75. DOI: 10.1002/pon.3533. View

20.

Scialla M, Canter K, Chen F, Kolb E, Sandler E, Wiener L . Delivery of care consistent with the psychosocial standards in pediatric cancer: Current practices in the United States. Pediatr Blood Cancer. 2017; 65(3). PMC: 5766412. DOI: 10.1002/pbc.26869. View