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1.
J Pediatr Hematol Oncol Nurs ; 41(2): 85-95, 2024.
Article in English | MEDLINE | ID: mdl-38008953

ABSTRACT

Background/objectives: Little is known about the COVID-19 pandemic and its impact on the quality of life (QoL) of children with cancer who may be more vulnerable to the pandemic's effects. We examined associations between COVID-19 exposure and impact on parent-proxy reported QoL in children with cancer, and potential moderation based on the child's cancer status (i.e., time since diagnosis, on/off treatment). Design/method: Parents of children with cancer were recruited February-April 2021 via Facebook and Momcology. Parents completed the COVID-19 Exposure and Family Impact Scale and a child QoL measure. Controlling for parent age, income, child age, and child sex, we examined the indirect effect of COVID-19 impact on the association between COVID-19 exposure and parent-proxy reported child QoL, as well as the moderating role of cancer status. Results: Parents (N = 401) reported lower child QoL scores (M = 59.74) than prepandemic reports of children with cancer, t(735) = -6.98, p < .001. Mediation analyses revealed a significant indirect effect, 95% CI [-0.47, -0.13]: Higher COVID-19 exposure was associated with higher COVID-19 impact (a = 0.47, p < .001), which was related to lower QoL (b = -0.56, p < .001). The association between impact and QoL was stronger as time since diagnosis increased (95%CI [-0.08, -0.001]), yet treatment status did not moderate this path. Conclusions: Parents who report greater COVID-19 impact may also report lower QoL in their children with cancer, especially further from diagnosis. Nurses and clinicians should be aware of the pandemic's negative impact and screen for COVID-19 related distress. Additionally, results highlight the importance of long-term, family-centered care, regardless of whether children receive treatment or survivorship care.


Subject(s)
COVID-19 , Neoplasms , Child , Humans , Quality of Life , Pandemics , COVID-19/epidemiology , Parents , Neoplasms/epidemiology
2.
PLoS One ; 18(8): e0289987, 2023.
Article in English | MEDLINE | ID: mdl-37590237

ABSTRACT

Medication non-adherence rates in children range between 50% and 80% in the United States. Due to multifaceted outpatient routines, children receiving hematopoietic stem cell transplant (HCT) are at especially high risk of non-adherence, which can be life-threatening. Although digital health interventions have been effective in improving non-adherence in many pediatric conditions, limited research has examined their benefits among families of children receiving HCT. To address this gap, we created the BMT4me© mobile health app, an innovative intervention serving as a "virtual assistant" to send medication-taking reminders for caregivers and to track, in real-time, the child's medication taking, barriers to missed doses, symptoms or side effects, and other notes regarding their child's treatment. In this randomized controlled trial, caregivers will be randomized to either the control (standard of care) group or the intervention (BMT4me© app) group at initial discharge post-HCT. Both groups will receive an electronic adherence monitoring device (i.e., medication event monitoring system "MEMS" cap, Medy Remote Patient Management "MedyRPM" medication adherence box) to store their child's immunosuppressant medication. Caregivers who agree to participate will be asked to complete enrollment, weekly, and monthly parent-proxy measures of their child's medication adherence until the child reaches Day 100 or complete taper from immunosuppression. Caregivers will also participate in a 15 to 30-minute exit interview at the conclusion of the study. Descriptive statistics and correlations will be used to assess phone activity and use behavior over time. Independent samples t-tests will examine the efficacy of the intervention to improve adherence monitoring and reduce readmission rates. The primary expected outcome of this study is that the BMT4me© app will improve the real-time monitoring and medication adherence in children receiving hematopoietic stem cell transplant following discharge, thus improving clinical outcomes.


Subject(s)
Medication Adherence , Telemedicine , Humans , Child , Drug Monitoring , Advance Directives , Stem Cell Transplantation , Randomized Controlled Trials as Topic
3.
Front Psychol ; 13: 1079848, 2022.
Article in English | MEDLINE | ID: mdl-36710839

ABSTRACT

COVID-19 resulted in mass quarantine measures early in the pandemic. This disruption of daily life widened inequities and made children one of the most vulnerable populations during the crisis. This national, cross-sectional "COVID-Kids" study collected data from almost 500 parent-child dyads using standardized measures to better understand the effects of COVID exposure and impact on children's quality of life and loneliness. Data were collected via social media from May to July 2020. According to parent proxy and child self-report, United States children experienced worse quality of life (p < 0.0001; d = 0.45 and 0.53) and greater child-reported loneliness (p < 0.0001) when compared to normative, healthy samples (i.e., children who do not have a chronic medical condition). Older children (r = 0.16, p = 0.001) and female children (r = 0.11, p = 0.02) reported greater loneliness. Higher child-reported family functioning scores were associated with better quality of life (r = 0.36, p < 0.0001) and less loneliness (r = -0.49, p < 0.0001). Moderated mediation analyses indicated the indirect effect of parent COVID impact on the association between COVID exposure and child quality of life was weaker in the context of better family functioning. Results of this study raise concern for the short-and long-term sequelae of the pandemic on the physical and mental health of children. Healthcare providers and researchers must find new and innovative ways to protect the well-being of children. Strengthening family functioning may buffer the effects of the pandemic and improve overall quality of life in our "COVID Kids."

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