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Children
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Psychosocial Functioning in Childhood Cancer
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Psychosocial Functioning in Childhood Cancer

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Oncology and Hematology".

Deadline for manuscript submissions: closed (31 December 2019) | Viewed by 32485

Special Issue Editors

Dr. Abby R. Rosenberg

E-Mail Website
Guest Editor
Director, Palliative Care and Resilience Research, Seattle Children's Research Institute, 1900 9th Ave, JMB 10-C, Seattle, WA 91010, USA
Interests: Palliative care; resilience; intervention science; psychosocial outcomes; adolescents and young adults; caregivers.
Dr. Victoria W. Willard

E-Mail Website
Guest Editor
Assistant Member, Department of Psychology, St. Jude Children’s Research Hospital, Memphis, TN
Interests: Social outcomes after childhood cancer; social-emotional development; psychosocial functioning; the impact of cancer in early childhood; coping and adaptation to childhood cancer

Special Issue Information

Dear Colleagues,

The experience of childhood cancer has changed dramatically in the past several decades. Whereas the disease was once universally fatal, now approximately 80% of children with cancer with survive their illness.

What has not changed is the fact that pediatric cancer is about more than biology. It is also about emotional, social, and spiritual well-being for children and their families both during and after cancer therapy. For example, pediatric cancer is universally stressful. Patient survivors may experience significant physical and psychosocial morbidities. Siblings, parents, and family units may be irrevocably impacted by changing family dynamics and economics. Fortunately, not all psychosocial outcomes are poor. Many patients and families demonstrate remarkable resilience.

It is time to embrace psychosocial wellbeing as a fundamental element of pediatric cancer care. This Special Issue of Children is dedicated to describing achievements and persistent gaps in pediatric psychosocial oncology clinical care, education, and research. Both rigorous reviews and original research will be considered.

We look forward to receiving your contributions.

Kind Regards

Dr. Abby R. Rosenberg
Dr. Victoria W. Willard
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Children is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2400 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • Pediatric
  • Cancer
  • Psychosocial
  • Quality of life
  • Parents
  • Siblings
  • Family
  • Palliative care

Published Papers (7 papers)

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Research

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25 pages, 469 KiB  
Article
The Role of Social Support in Adolescent/Young Adults Coping with Cancer Treatment
by Sarah Pennant, Simon C. Lee, Suzanne Holm, Kelli N. Triplett, Laura Howe-Martin, Ryan Campbell and Julie Germann
Children 2020, 7(1), 2; https://doi.org/10.3390/children7010002 - 23 Dec 2019
Cited by 33 | Viewed by 7050
Abstract
Adolescents/young-adult (AYA) cancer patients are a psychosocially at-risk group as they are often less well-studied than other age cancer cohorts. Therefore, they experience disparities in access to developmentally informed treatment. Social support has been determined as an important aspect of AYAs’ cancer experience, [...] Read more.
Adolescents/young-adult (AYA) cancer patients are a psychosocially at-risk group as they are often less well-studied than other age cancer cohorts. Therefore, they experience disparities in access to developmentally informed treatment. Social support has been determined as an important aspect of AYAs’ cancer experience, but additional research was needed to describe specific behaviors AYAs found helpful and to explore how AYAs seek opportunities for additional support. As part of a larger qualitative study, study aims were to determine how AYAs (ages 15–26) cope during cancer treatment and examine how social support interacts with individual AYA coping. Participants included 10 AYA cancer patients undergoing treatment (mean age = 18.9 years) and 10 parents (mean age = 45.6 years). Descriptively, participants scored within the normal to high range on measures of hope, depression/anxiety/stress, quality of life, and social support. Participants completed semi-structured, audio-recorded interviews that were transcribed and coded as generated. Qualitative analysis was guided by principles of grounded theory and utilized the constant comparative approach. Themes within social support groups included presence, distraction, positive attitude, and maintaining AYA autonomy, communication, and advocacy. Results suggest social supports provide additional coping resources for AYAs with cancer through supplementing individual coping strategies. Future directions/implications for intervention/treatment are discussed. Full article
(This article belongs to the Special Issue Psychosocial Functioning in Childhood Cancer)
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10 pages, 236 KiB  
Article
Cognitive and Psychosocial Development in Young Children with Brain Tumors: Observations from a Clinical Sample
by Niki Jurbergs, Jennifer L. Harman, Ansley E. Kenney, Katherine Semenkovich, Andrew E. Molnar, Jr. and Victoria W. Willard
Children 2019, 6(11), 128; https://doi.org/10.3390/children6110128 - 19 Nov 2019
Cited by 4 | Viewed by 4278
Abstract
Survivors of pediatric brain tumor (BT) are known to be at risk for developing cognitive and psychosocial late effects. Young age at treatment (≤6 years) is typically considered to put patients at increased risk. However, there is limited research specifically exploring functioning in [...] Read more.
Survivors of pediatric brain tumor (BT) are known to be at risk for developing cognitive and psychosocial late effects. Young age at treatment (≤6 years) is typically considered to put patients at increased risk. However, there is limited research specifically exploring functioning in these young patients. Cognitive and psychosocial data were retrospectively abstracted from medical charts for 79 young patients (54.4% male) treated for BT with a variety of treatment modalities (e.g., surgery, radiation therapy, chemotherapy). Children were clinically assessed at 4.52 years of age (range = 1.48–5.98) and most were off-therapy (74.4%). Mean performances on developmental (68.3 ± 10.02), cognitive (88.09 ± 18.38), and pre-academic (86.84 ± 19.75) measures were all below average. Parent report of adaptive functioning was also below average (82.10 ± 16.21), but psychosocial functioning was generally within normal limits. Most patients had impaired functioning (scores <10th percentile) in at least one domain assessed. Exploratory analyses revealed that many patients (27.3–60.6%) exhibited a significant discrepancy between domains of cognitive functioning (e.g., verbal and spatial). Young children treated for BT experienced high rates of impairment in cognitive, pre-academic, and adaptive domains. Future work is needed to focus on serial longitudinal assessment of these young patients, as well as dedicated intervention and prevention efforts. Full article
(This article belongs to the Special Issue Psychosocial Functioning in Childhood Cancer)
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12 pages, 918 KiB  
Article
A Psychosocial Intervention’s Impact on Quality of Life in AYAs with Cancer: A Post Hoc Analysis from the Promoting Resilience in Stress Management (PRISM) Randomized Controlled Trial
by Angela Steineck, Miranda C. Bradford, Nancy Lau, Samantha Scott, Joyce P. Yi-Frazier and Abby R. Rosenberg
Children 2019, 6(11), 124; https://doi.org/10.3390/children6110124 - 2 Nov 2019
Cited by 21 | Viewed by 4749
Abstract
Promoting Resilience in Stress Management (PRISM), a psychosocial intervention for adolescents and young adults (AYAs) with serious illness, enhances resilience resources via four skills-based training sessions. A recent randomized controlled trial showed PRISM improved health-related quality of life (HRQOL) compared to usual care [...] Read more.
Promoting Resilience in Stress Management (PRISM), a psychosocial intervention for adolescents and young adults (AYAs) with serious illness, enhances resilience resources via four skills-based training sessions. A recent randomized controlled trial showed PRISM improved health-related quality of life (HRQOL) compared to usual care (UC). This post hoc exploratory analysis aimed to better understand the effect of PRISM on HRQOL by describing changes in HRQOL subdomain scores. English-speaking AYAs (12–25 years) with cancer were randomized to PRISM or UC. At enrollment and six months later, HRQOL was assessed using the Pediatric Quality of Life Inventory (PedsQL) Generic Short Form (SF-15) and Cancer Module. Scores at each time point were summarized descriptively and individual HRQOL trajectories were categorized (<70 vs. ≥70). “Positive” trajectories indicate participants maintained scores ≥70 or improved from <70 to ≥70 during the study period. Baseline assessments were completed by 92 participants (48 PRISM, 44 UC); six-month assessments were completed by 74 participants (36 PRISM, 38 UC). For the SF-15, positive trajectories in psychosocial domains were more common with PRISM; trajectories in the physical subdomain were similar across groups. For the Cancer Module, positive trajectories were more common with PRISM in the following subdomains: nausea, treatment anxiety, worry, cognitive, physical appearance, and communication. From this, we conclude PRISM may improve HRQOL, especially in psychosocial domains of wellbeing. Full article
(This article belongs to the Special Issue Psychosocial Functioning in Childhood Cancer)
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14 pages, 475 KiB  
Article
Conducting Psychosocial Intervention Research among Adolescents and Young Adults with Cancer: Lessons from the PRISM Randomized Clinical Trial
by Abby R. Rosenberg, Courtney C. Junkins, Nicole Sherr, Samantha Scott, Victoria Klein, Krysta S. Barton and Joyce P. Yi-Frazier
Children 2019, 6(11), 117; https://doi.org/10.3390/children6110117 - 24 Oct 2019
Cited by 7 | Viewed by 4153
Abstract
Background: Adolescents and young adults (AYAs) with cancer have poor psychosocial outcomes, in part because their limited participation in clinical trials precludes intervention-testing. We previously reported results of a successful randomized trial testing an AYA-targeted psychosocial intervention. Here, we aimed to describe strategies [...] Read more.
Background: Adolescents and young adults (AYAs) with cancer have poor psychosocial outcomes, in part because their limited participation in clinical trials precludes intervention-testing. We previously reported results of a successful randomized trial testing an AYA-targeted psychosocial intervention. Here, we aimed to describe strategies learned during the trial’s conduct. Methods: We summarized data from the medical record and staff field notes regarding reasons for participation/non-participation. We conducted two focus groups with study staff; directed content analyses identified strategies for success. Results: 92 AYAs enrolled (77% of approached; n = 50 Usual Care (control), n = 49 PRISM (intervention)). In eligible families who declined participation (n = 22 AYAs, n = 8 parents), the AYAs more commonly had advanced cancer (n = 11 (37%) declined vs. n = 25 (26%) enrolled). AYA reasons for non-enrollment were predominantly “not interested”; parents worried participation was “too burdensome.” Staff strategies for accrual included having significant time to introduce the study and underscoring a desire to learn from the patient. After enrollment, AYAs who discontinued participation were more commonly assigned to control (n = 5 (10%) control vs. n = 2 (4%) intervention). Only n = 1 AYA chose to discontinue participation after receiving the intervention. Conclusions: Efforts to engage AYAs prior to and during studies may help with accrual and retention. Full article
(This article belongs to the Special Issue Psychosocial Functioning in Childhood Cancer)
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12 pages, 915 KiB  
Article
The Many Roles of the Rock: A Qualitative Inquiry into the Roles and Responsibilities of Fathers of Children with Brain Tumors
by Jacob E. Robinson, David Huskey, Jonathan Schwartz and Meaghann S. Weaver
Children 2019, 6(10), 113; https://doi.org/10.3390/children6100113 - 11 Oct 2019
Cited by 19 | Viewed by 4615
Abstract
A pediatric brain tumor diagnosis impacts an entire family unit, from diagnosis through curative treatment, and into survivorship or bereavement. Paternal caregiver experience has been significantly underexplored in pediatric neuro-oncology research as compared to maternal experience. This case series study explores the paternal [...] Read more.
A pediatric brain tumor diagnosis impacts an entire family unit, from diagnosis through curative treatment, and into survivorship or bereavement. Paternal caregiver experience has been significantly underexplored in pediatric neuro-oncology research as compared to maternal experience. This case series study explores the paternal roles, responsibilities, strengths, challenges, personal growth, and support needs of fathers of children with brain tumors receiving new palliative care consultations. In the study setting, a neuro-oncology diagnosis results in an automatic referral to the palliative care team, and thus, a convenience sampling model was employed based on consecutive palliative care consults for new childhood brain tumor diagnoses. In this study, four fathers of pediatric brain tumor patients receiving palliative care consultations responded to eight open-ended questions. Individual, voice-recorded interviews were transcribed for semantic content qualitative analysis. Analysis followed Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Participants completed quantitative surveys of their information preferences and support needs. Participants defined their father role as: being a team parent, an adaptable father, supporter, provider, a present father, and protector. Role conflict due to paternal responsibilities were recognized, such as the absence from the hospital to provide financial security for the family, and yet a desire to be physically present for the child. Fathers prioritized their knowledge needs about their child’s diagnosis, prognosis, and treatment above emotional needs. Fathers shared experiences of their personal growth through their child’s brain tumor diagnosis and advised on preferred support formats to include both verbal and written information. Understanding how paternal caregivers of children with cancer define their roles and goals has potential to improve the care and communication delivered to families of pediatric neuro-oncology patients. Full article
(This article belongs to the Special Issue Psychosocial Functioning in Childhood Cancer)
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14 pages, 586 KiB  
Article
Social Functioning of Childhood Cancer Survivors after Computerized Cognitive Training: A Randomized Controlled Trial
by Leanne K. Mendoza, Jason M. Ashford, Victoria W. Willard, Kellie N. Clark, Karen Martin-Elbahesh, Kristina K. Hardy, Thomas E. Merchant, Sima Jeha, Fang Wang, Hui Zhang and Heather M. Conklin
Children 2019, 6(10), 105; https://doi.org/10.3390/children6100105 - 27 Sep 2019
Cited by 7 | Viewed by 4770
Abstract
Childhood cancer survivors are at risk for cognitive and social deficits. Previous findings indicate computerized cognitive training can result in an improvement of cognitive skills. The current objective was to investigate whether these cognitive gains generalize to social functioning benefits. Sixty-eight survivors of [...] Read more.
Childhood cancer survivors are at risk for cognitive and social deficits. Previous findings indicate computerized cognitive training can result in an improvement of cognitive skills. The current objective was to investigate whether these cognitive gains generalize to social functioning benefits. Sixty-eight survivors of childhood cancer were randomly assigned to a computerized cognitive intervention (mean age 12.21 ± 2.47 years, 4.97 ± 3.02 years off-treatment) or waitlist control group (mean age 11.82 ± 2.42 years, 5.04 ± 2.41 years off-treatment). Conners 3 Parent and Self-Report forms were completed pre-intervention, immediately post-intervention and six-months post-intervention. Piecewise linear mixed-effects models indicated no significant differences in Peer Relations between groups at baseline and no difference in change between groups from pre- to immediate post-intervention or post- to six-months post-intervention (ps > 0.40). Baseline Family Relations problems were significantly elevated in the control group relative to the intervention group (p < 0.01), with a significantly greater decline from pre- to immediate post-intervention (p < 0.05) and no difference in change between groups from post- to six-months post-intervention (p > 0.80). The study results suggest cognitive gains from computerized training do not generalize to social functioning. Training focused on skill-based social processing (e.g., affect recognition) may be more efficacious. Full article
(This article belongs to the Special Issue Psychosocial Functioning in Childhood Cancer)
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Review

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12 pages, 517 KiB  
Review
Grief and Bereavement in Parents After the Death of a Child in Low- and Middle-Income Countries
by Michael J. McNeil, Eve Namisango, Jennifer Hunt, Richard A. Powell and Justin N. Baker
Children 2020, 7(5), 39; https://doi.org/10.3390/children7050039 - 1 May 2020
Cited by 17 | Viewed by 6602
Abstract
While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative [...] Read more.
While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole. Full article
(This article belongs to the Special Issue Psychosocial Functioning in Childhood Cancer)
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