Parents’ Experiences of Childhood Cancer During the COVID-19 Pandemic: An Australian Perspective

Davies, Jenny; O’Connor, Moira; Halkett, Georgia; Kelada, Lauren; Gottardo, Nicholas G.

doi:10.1093/jpepsy/jsab125

Cited by 16 publications

(19 citation statements)

References 33 publications

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“…COVID‐19 and associated visitor restrictions have greatly impeded centers’ abilities to meet the standard of family‐centered care 36 . Siblings now have even less access to hospital‐based services, due to strict infection control efforts 37,38 . Many of these new policies may be retained post‐pandemic.…”

Section: Discussionmentioning

confidence: 99%

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Inconsistent, uncoordinated, and reactive: The current state of sibling psychosocial care

Davis

Brosnan

Mazzenga

et al. 2022

Pediatric Blood & Cancer

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Background: Although providing sibling psychosocial services is a standard of care in pediatric oncology, initial survey research suggests that this standard is rarely achieved and siblings' support needs remain unmet. Which sibling psychosocial services are available and how centers provide such services is unknown. To identify targetable services gaps, this qualitative study characterizes current sibling psychosocial care practices at select pediatric cancer centers across the United States.Procedure: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) working across the United States in pediatric oncology centers of varied sizes. Interviews queried providers regarding siblingfocused parent psychoeducation, psychosocial screening, comprehensive assessment, and psychosocial support offerings. Interview data were analyzed using Applied Thematic Analysis.Results: Across cancer centers, sibling care practices did not align with consensusbased recommendations. The nature and availability of sibling-focused psychoeducation, screening, assessment, and support were variable between and within centers.Siblings themselves were largely absent from sibling psychosocial care, and care was rarely sibling-specific. The flow of information about siblings was discontinuous and uncoordinated across the care continuum, resulting in psychosocial care provided reactively, typically in response to parental concerns. Conclusions:Sibling psychosocial care provision falls short of established care recommendations, leaving sibling psychosocial needs unmet. Findings highlight the need for tools and strategies to facilitate the implementation of sibling psychosocial care across the care continuum, to support siblings' psychosocial functioning across the life course.

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Section: Discussionmentioning

confidence: 99%

“…36 Siblings now have even less access to hospital-based services, due to strict infection control efforts. 37,38 Many of these new policies may be retained postpandemic. Thus, this study's findings likely substantially underestimate the gaps in current sibling care practices.…”

Section: Discussionmentioning

confidence: 99%

Inconsistent, uncoordinated, and reactive: The current state of sibling psychosocial care

Davis

Brosnan

Mazzenga

et al. 2022

Pediatric Blood & Cancer

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“…The challenge of participant recruitment for health behavior interventions among children diagnosed with cancer is common [ 8 , 41 ]. However, our challenges may have been exacerbated because of recruitment from a single site and parents not wanting to commit to research interventions because of the unknown risk of COVID-19 for unvaccinated children diagnosed with cancer and their immunocompromised status [ 42 ]. Despite the lower-than-anticipated opt-in rate, the retention rate and program engagement were high, demonstrating that once the survivors expressed interest in the iBounce program, they were highly receptive to it.…”

Section: Discussionmentioning

confidence: 99%

A Digital Educational Intervention With Wearable Activity Trackers to Support Health Behaviors Among Childhood Cancer Survivors: Pilot Feasibility and Acceptability Study

Ha¹,

Wakefield²,

Mizrahi³

et al. 2022

JMIR Cancer

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Background Childhood cancer survivors are at increased risk of cardiometabolic complications that are exacerbated by poor health behaviors. Critically, many survivors do not meet physical activity guidelines. Objective The primary aim was to evaluate the feasibility and acceptability of iBounce, a digital health intervention for educating and engaging survivors in physical activity. Our secondary aims were to assess the change in survivors’ physical activity levels and behaviors, aerobic fitness, and health-related quality of life (HRQoL) after participating in the iBounce program. Methods We recruited survivors aged 8 to 13 years who were ≥12 months post cancer treatment completion. The app-based program involved 10 educational modules, goal setting, and home-based physical activities monitored using an activity tracker. We assessed objective physical activity levels and behaviors using cluster analysis, aerobic fitness, and HRQoL at baseline and after the intervention (week 12). Parents were trained to reassess aerobic fitness at home at follow-up (week 24). Results In total, 30 participants opted in, of whom 27 (90%) completed baseline assessments, and 23 (77%) commenced iBounce. Our opt-in rate was 59% (30/51), and most (19/23, 83%) of the survivors completed the intervention. More than half (13/23, 57%) of the survivors completed all 10 modules (median 10, IQR 4-10). We achieved a high retention rate (19/27, 70%) and activity tracker compliance (15/19, 79%), and there were no intervention-related adverse events. Survivors reported high satisfaction with iBounce (median enjoyment score 75%; ease-of-use score 86%), but lower satisfaction with the activity tracker (median enjoyment score 60%). Parents reported the program activities to be acceptable (median score 70%), and their overall satisfaction was 60%, potentially because of technological difficulties that resulted in the program becoming disjointed. We did not observe any significant changes in physical activity levels or HRQoL at week 12. Our subgroup analysis for changes in physical activity behaviors in participants (n=11) revealed five cluster groups: most active, active, moderately active, occasionally active, and least active. Of these 11 survivors, 3 (27%) moved to a more active cluster group, highlighting their engagement in more frequent and sustained bouts of moderate-to-vigorous physical activity; 6 (56%) stayed in the same cluster; and 2 (18%) moved to a less active cluster. The survivors’ mean aerobic fitness percentiles increased after completing iBounce (change +17, 95% CI 1.7-32.1; P=.03) but not at follow-up (P=.39). Conclusions We demonstrated iBounce to be feasible for delivery and acceptable among survivors, despite some technical difficulties. The distance-delivered format provides an opportunity to engage survivors in physical activity at home and may address barriers to care, particularly for regional or remote families. We will use these pilot findings to evaluate an updated version of iBounce. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12621000259842; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=ACTRN12621000259842

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“…A study in UK found that parents/caregivers were worried that their children would get infected by the virus and felt that hospital was not a safe place, thus increasing parents' anxiety and concerns about their child's care. 26,27 Another study also stated that hospital restriction increased parent's psychosocial distress during the pandemic, especially regarding the risk of suboptimal care received by their children. [27][28][29] There are limited data on the mental health status of pediatric patients with cancer during the COVID-19 pandemic.…”

Section: Introductionmentioning

confidence: 99%

Mental Wellbeing among Children with Cancer during COVID-19 Pandemic in Indonesia: A Cross-sectional Study

Sari

Wiguna

Elvira

et al. 2023

Indian J Med Paediatr Oncol

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Introduction Coronavirus disease 2019 (COVID-19) has affected both physical and mental aspect of people worldwide, especially the high-risk group such as pediatric cancer patients. Children with cancer were considered both clinically and mentally vulnerable during this pandemic. They were also affected by the self-isolation, quarantine, and social distancing policy taken as a respond to public threat. Objectives To evaluate the impact of social distancing and health protocol during COVID-19 on the mental health profile of children with cancer in Indonesia. Methods A cross-sectional study evaluating the mental health of children with cancer during COVID-19 pandemic was conducted in Cipto Mangunkusumo Hospital, Jakarta, Indonesia from June to September 2020. An online questionnaire was used to collect demographics of parents and children, children's Strength and Difficulties Questionnaire (SDQ) score, and parents' Self-Reporting Questionnaire (SRQ). SDQ score consists of five subscales, including the emotional symptoms, conduct problems, hyperactivity, peer relationships problems and prosocial behavior. Cancer types were grouped into retinoblastoma, nonretinoblastoma (other solid tumors), and leukemia. Results There were 156 valid responses, consisting of 42 patients with retinoblastoma, 34 patients with nonretinoblastoma (other solid tumors), and 80 patients with leukemia. Pandemic-related lifestyle changes did not significantly impact emotional or behavioral problems. Children with normal total SDQ (odds ratio [OR]: 473, p = 0.001) and emotional scores (OR: 3.19, p = 0.07) had parents with normal SRQ scores (<6). Leukemia patients with shorter diagnosis period had worse hyperactivity score (p = 0.01). On the contrary, leukemia inpatients had better prosocial scores than outpatients (p = 0.03). More bilateral retinoblastoma patients (p = 0.04) with longer duration of cancer diagnosis (p = 0.03) faced peer problems. Conclusions Our study revealed that lifestyle changes during early COVID-19 pandemic were not major factors impacting emotional and behavioral problems in children with cancer. However, disease-related factors pose great challenges; thus, a holistic mental health support system should be available to both children and parents.

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Parents’ Experiences of Childhood Cancer During the COVID-19 Pandemic: An Australian Perspective

Cited by 16 publications

References 33 publications

Inconsistent, uncoordinated, and reactive: The current state of sibling psychosocial care

Inconsistent, uncoordinated, and reactive: The current state of sibling psychosocial care

A Digital Educational Intervention With Wearable Activity Trackers to Support Health Behaviors Among Childhood Cancer Survivors: Pilot Feasibility and Acceptability Study

Mental Wellbeing among Children with Cancer during COVID-19 Pandemic in Indonesia: A Cross-sectional Study

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