Parents Of Pediatric Cancer Patients Research Articles

Psychological Experiences of Parents of Pediatric Cancer Patients during and after COVID-19 Pandemic.

Family members dealing with the devastating impact of a cancer diagnosis are now facing even greater vulnerability due to the COVID-19 pandemic. Alongside the already overwhelming trauma, they must also bear the distressing burden of the infection risks. The purpose of this study was to examine and explore the effects in parents of pediatric cancer patients two years after the start of the COVID-19 pandemic to compare these data with the previous data. We conducted a single-center prospective observational study, enrolling 75 parents of 42 pediatric oncology patients. Four questionnaires (IES-R; PSS; STAI-Y and PedsQL) were given to the parents 2 years after the first evaluation. The bivariate matrix of correlation found a strong significant positive correlation between IES-R and PSS scores (r = 0.526, p < 0.001) as in T1. Stress symptoms (t = 0.00, p < 0.001) and levels of anxiety (trait) (t = 0.32, p < 0.001) remained unchanged; anxiety state levels appeared to have increased (t = 0.425, p < 0.001); there was a significant decrease in the PedsQL tot (t = 5.25, p < 0.001). The COVID-19 pandemic has influenced the levels of stress and anxiety of parents and the quality of life of patients, also correlating with the traumatic impact of the diagnosis.

B - 23 The Effects of Family Functioning on Medication Adherence in Pediatric Cancer Patients.

Despite life-threatening consequences of pediatric cancer, treatment non-adherence rates range from 10-75%. Given the neurocognitive effects of chemotherapy it is important to study medication adherence to prevent disease relapse. The current study examined potential predictors of medication adherence among pediatric cancer patients. Survey data was collected from 104 parents of pediatric cancer patients through online and social media portals, family support groups, pediatric cancer websites, and foundations. Informed by the McMaster Model of Family Functioning, it was hypothesized that poor medication adherence would be predicted by multiple factors using multiple regression analysis. Results indicated poor communication (p = 0.049), behavioral control (p < 0.001), and affective responsiveness (p = 0.005) are predictors of poor medication adherence. Poor problem solving (p = 0.016) and higher degree of effort (p < 0.001) predict higher medication adherence. Post-hoc analysis indicated that when controlling for problem solving, child's sex had a significant effect on medication adherence. There was a significant effect of time since diagnosis on medication adherence after controlling for the effect of problem solving, communication, behavior control, and condition management effort. There was a significant effect of family's income on medication adherence after controlling for the effect of problem solving, communication, affective responsiveness, and condition management effort. In the current study, several predictors of adherence were identified. This knowledge helps medical and psychological professionals to work collaboratively to promote adherence. Future research is needed to further understand multicultural factors that may predict poor adherence and how specific pediatric cancer diagnoses impact family functioning.

Improved home management of oral pediatric anticancer drugs as a result of an intervention comprising practical training, written instructions and movie clips: A pilot study.

Long term treatment of pediatric patients with oral anticancer drugs (OADs) requires the parents/caregivers to prepare the drug at home. The handling procedures in the home setting are, however, not regulated by Swedish law and the parents are often left without guidance on how to handle OADs in a safe way. The aim of this study was to increase understanding of how OADs are handled by parents/caregivers in the home setting before and after an intervention. Parents of pediatric cancer patients were observed and videotaped during their handling of OADs in the home setting before and after the intervention. During the intervention, the parents were provided with written instructions, movie clips and practical training on handling the OADs. Four checklists were used to compare and score the four handling procedures (measuring an oral suspension, cutting tablets, dissolving tablets, and opening capsules) for each parent before and after the intervention. The intervention significantly improved the OAD handling procedures among the studied parents. The median score for correct handling was 19% (IQR: 3.6 to 30%) before the intervention and 89.5% (IQR: 71.5 to 94.5%) after the intervention (p < 0.0001). An intervention comprising practical training and information presented in different forms improved the handling of OADs at home by parents. There is an urgent need to implement this method in all oncology centers in Sweden, educate HCPs to standardize the presentation of information. There is also a great need to provide parents with age-appropriate oral drug formulations from the local hospital pharmacies in Sweden.

COPING STYLE OF PARENTS OF PEDIATRIC CANCER PATIENTS AT A HOSPITAL A LIMA

The coping that parents present with their child with cancer, they tend to differentiate and adapt during the situations that their child presents during each stage of treatment. The objective is to determine the Coping Style of parents of pediatric cancer patients at a Hospital in Lima. In the results, 1.2% of the study participants (2/168) have a medium coping capacity, while the majority, equivalent to 98.8% (166/168), have a high capacity of coping. It is concluded that a comprehensive care program should be accessed where it allows to elevate the areas affected by the stressful situation during the disease and by the aspects involved in having a family member with cancer.

Factors predicting resilience in parents of pediatric cancer patients in Kerala

Factors predicting resilience in parents of pediatric cancer patients in Kerala

Psychological Impact of COVID-19 on Parents of Pediatric Cancer Patients.

The changes and general alarm of the current COVID-19 pandemic have amplified the sense of precariousness and vulnerability for family members who, in addition to the emotional trauma of the cancer diagnosis, add the distress and fear of the risks associated with infection. The primary objectives of the present study were to investigate the psychological impact of the COVID-19 pandemic on the parents of pediatric cancer patients, and the level of stress, anxiety, and the child’s quality of life perceived by the parents during the COVID-19 epidemic. The parents of 45 consecutive children with solid and hematological tumors were enrolled. Four questionnaires (Impact of Event Scale-Revised – IES-R; Perceived Stress Scale – PSS; Spielberger State – Trait Anxiety Inventory – STAI-Y; Pediatric Quality of Life Inventory – PedsQL) were administered to the parents at the beginning of the pandemic lockdown. A 75% of parents exhibited remarkable levels of anxiety, with 60 subjects in state scale and 45 subjects in trait scale having scores that reached and exceeded the STAI-Y cut off. The bivariate matrix of correlation found a significant positive correlation between the IES-R and PSS scores (r = 0.55, P < 0.001). There was a positive correlation between the PSS and PedsQL (emotional needs) scale (P < 0.001) and a negative correlation between IES-R and STAI-Y (P < 0.001). The results confirm that parents of pediatric cancer patients have a high psychological risk for post-traumatic symptoms, high stress levels, and the presence of clinically significant levels of anxiety.

Thinking ahead: Parents' worries about late effects of childhood cancer treatment.

Many childhood cancersurvivors experience at least one late effect of treatment, and both late effects and persistent cancer-related worry can negatively impact quality of life in survivorship. Little is known about the prevalence or impact of parental worry about late effects early in treatment. This study evaluated parental perceived likelihood, impact, and worry about late effects of childhood cancer. We surveyed 96 parents of pediatric cancer patients at Dana-Farber/Boston Children's Cancer and Blood Disorders Center within a year of diagnosis. Parents were asked about their experiences with late effects communication, general worry about late effects, and specific late effect worries. Most (96%) parents valued information about late effects, and 93% considered late effects in their treatment decision-making. Yet, 24% could not recall receiving any information about late effects, and only 51% felt well prepared for potential late effects. Though only 20% of parents considered their child at high risk of experiencing late effects, 61% were extremely/very worried about late effects. Those who felt their child was at high risk of experiencing late effects were more likely to worry (OR=4.7, P=0.02). Many parents feel inadequately informed about late effects of cancer treatment, and only one-fifth of parents consider late effects to be likely for their child. However, a majority of parents worry about late effects, including ones they think their child is unlikely to experience. Although some worry is anticipated, disproportionate worry may be mitigated by addressing both educational shortfalls and emotional concerns.

Mental health needs among parents of children with cancer: A commercial claims data analysis.

e18722 Background: Caring for a child diagnosed with cancer may adversely affect mental health (MH) of parents. However, little is known about MH care needs among parents of pediatric cancer patients. This study examined the patterns of MH care for parents of children diagnosed with cancer, as compared to parents of children without cancer. Methods: We used MarketScan® Commercial Database to identify continuously-insured parents of children receiving therapy for leukemia, lymphoma, central nervous system, bone, or gonadal cancers (aged ≤21 years at diagnosis) in 2009-2017. We also identified parents who matched eligibility criteria but had no child with cancer (with a randomly-assigned, fictitious date of cancer diagnosis) as controls. Outcomes included parents’ visits related to a MH disorder (anxiety, depression, substance use disorder [SUD], post-traumatic stress disorder [PTSD]) during six months before to 12 months after their child’s cancer diagnosis. Multivariable regressions were estimated to compare MH visits between 9,870 parents of pediatric cancer patients and 3,396,097 parents in the control group, adjusting for sociodemographic factors (parents’ age and sex, rurality, region, number of children in household) and presence of MH history. Among parents of pediatric cancer patients, we explored sociodemographic factors, MH history, and clinical factors (children’s cancer types, age at diagnosis, therapeutic modalities) associated with MH-related visits in multivariable regression analyses. Results: While the likelihood of MH history was similar between the two groups, a higher proportion of parents caring for cancer patients than controls had any visits related to anxiety (13.1%% vs. 9.5%), depression (9.6% vs. 7.5%), PTSD (0.5% vs. 0.4%), or any MH disorders (22.0% vs. 17.6%). These differences persisted in adjusted analyses. For example, parents of cancer patients were 24%, 37%, and 27% ( p-values &lt; 0.001) more likely than controls to have any MH visits, anxiety-related visits, and depression-related visits, respectively. No difference was observed in SUD-related visits. Among MH care utilizers, no significant difference was observed in the number of MH visits. Among parents of cancer patients, those with MH history, mothers (vs. fathers), and parents of children with bone cancer (vs. leukemia) were more likely to have any MH visits ( p-values &lt; 0.05). Parents whose children received surgery only and those with ≥3 children in household were less likely to have any MH visits ( p-values &lt; 0.05). Conclusions: Parents of pediatric cancer patients have significantly higher needs for MH care as compared to the general parent population. Our finding underlines the importance of future interventions toward targeted MH counseling and supportive strategies for vulnerable parent groups, such as mothers and those caring for children undergoing more complex treatment plans.

Uncertainty and Nursing Needs of Parents with Pediatric Cancer Patients in Different Treatment Phases: A Cross-Sectional Study

The survival rate of pediatric cancer has increased to 80%, but long-term treatment is required. During treatment, parents experience uncertainty, which affects parents’ quality of life and, even worse, their children’s health; however, the variation of that uncertainty remains under-studied. Thus, it is crucial to understand parents’ nursing needs in each distinct treatment phase to develop relevant educational content. This study investigated the uncertainty level and nursing needs of parents according to their children’s treatment phase. This cross-sectional comparative descriptive study collected survey data from 119 people at a tertiary hospital from December 2017 to April 2018. Nursing needs were ascertained using open-ended questions, and data were analyzed using quantitative content analysis. The uncertainty levels of parents of pediatric cancer patients showed statistically significant differences across treatment phases (F = 8.209, p < 0.001). Parents’ uncertainty was higher in the treatment initiation phase (87.77 ± 13.43) and when treatment was ongoing (83.33 ± 15.10) than in the post-treatment phase (75.35 ± 12.82). All three groups had nursing needs regarding infection control, diet, daily activities of living, and prognosis. Parents’ uncertainty levels and nursing needs differed across treatment phases, suggesting a need for tailored education programs to provide practical support to parents of pediatric cancer patients in each phase.

Responsibility, culpability, and parental views on genomic testing for seriously ill children

PurposeWe describe parental perceptions of and experiences with genomic sequencing (GS) in the care of seriously ill children. Understanding parents’ perspectives is vital for clinicians caring for children, given the uptake of genomic technologies into clinical practice. MethodsLongitudinal, semistructured interviews were conducted with parents of pediatric cancer patients who underwent exome sequencing (ES) as a part of the BASIC3 study. Interviews were conducted at baseline, one to eight months after results disclosure, and approximately one year after disclosure. Using thematic qualitative analysis, parent interviews were coded with both inductive and deductive approaches. ResultsBefore receiving genomic information, parents indicated that they saw ES as something responsible parents would agree to if their child had cancer. Some parents talked about the possibility of sequencing affecting feelings of culpability for their child’s cancer, worrying that they passed on a cancer-causing gene or made parenting decisions that caused the disease. However, after receiving their child’s ES results many reported feeling relieved of guilt and worry, and felt they had fulfilled parental duties by agreeing to ES for their child. ConclusionThese results reveal a layer of meaning that parents associate with GS that may inform clinicians’ approach to care.

Prevalence of anxiety, depression, and posttraumatic stress disorder in parents of children with cancer: A meta-analysis.

For parents, a diagnosis of cancer in their child is a traumatic experience. However, there is conflicting evidence about the risk of developing mental illness among parents following diagnosis. Our objective was to conduct a meta-analysis to determine the prevalence of mental illness in parents of children with cancer. Four databases were searched to identify articles describing the prevalence of anxiety, depression, or posttraumatic stress disorder (PTSD) in parents of pediatric cancer patients. Two reviewers independently screened and extracted data. Subgroup analyses by gender and phase of cancer experience were selected a priori. Studies were reviewed in accordance with PRISMA guidelines. Of 11394 articles identified, 58 met inclusion criteria. Reported prevalence was highly heterogeneous, ranging from 5% to 65% for anxiety (pooled prevalence 21% [95% CI, 13%-35%]), 7% to 91% for depression (pooled prevalence 28% [95% CI, 23%-35%]), and 4% to 75% for PTSD (pooled prevalence 26% [95% CI, 22%-32%]). Prevalence was consistently higher than noncancer parental controls. Heterogeneity was not explained by parental gender or child's cancer phase and was instead likely due to significant methodological differences in measurement tools and defined thresholds. Parents of children with cancer have a higher prevalence of anxiety, depression, and PTSD compared with population controls. Yet, the reported prevalence of mental illness was highly variable, hampering any conclusive findings on absolute prevalence. To better understand the risk of long-term mental illness in this population and target interventions, future studies must adhere to standardized reporting and methods.

Pschychosocial support for distressed parents of Pediatric cancer patients

Survival rates for childhood cancer diagnosed before the age of 18 years have improved due to aggressive multidisciplinary therapeutic approaches. Parents have been found to be psychologically affected by their child’s diagnosis, treatment, side-effects of the treatment and child’s health status. Though parental emotional difficulties, such as depression and anxiety, have been reported to decrease after cancer treatment, parents continue to experience chronic post-traumatic stress (PTS) for a long time after their child’s treatment. Parents may also report persistent feelings of loss, uncertainty, and anxiety about the recurrence of the disease or the emergence of late effects in their child. Such illness-specific distress of the parents should be assessed in order to fully understand their psychosocial functioning. Sensitizing health care professionals to the identification of this factor and its associated difficulties is essential for the implementation of efficient intervention strategies. General health of parents plays an important role in continuation of care for the sick child and the treatment follow up. Parental distress and PTS are associated with the emotional and behavioral functioning of children with cancer. There is a genuine need to offer programs of psychological attention to parents of children with cancer in order to reduce their emotional and cognitive psychopathology and to help them adopt adequate coping strategies.

Exome sequencing disclosures in pediatric cancer care: Patterns of communication among oncologists, genetic counselors, and parents

ObjectiveTo examine communication patterns and behaviors during disclosure of exome sequencing (ES) results to parents of pediatric cancer patients, and describe common themes in parental communication. MethodsUsing mixed methods, we analyzed transcripts of sessions where parents of pediatric cancer patients received ES results from an oncologist and genetic counselor. Seventy-six transcripts were analyzed for frequency of clinician information-giving, partnering-supportive talk, and active parent participation. A subset of 40 transcripts were analyzed using thematic content analysis. ResultsDisclosures consisted mostly of clinician talk (84% of total talk), which was focused on providing information (62% of clinicians’ utterances) with occasional partnering-supportive talk (7% of clinicians’ utterances). Most parents assumed a passive, listening role (16% of total talk). Themes in parental communication included expressing relief and the significance of an answer, concern about sharing results and responsibility for inheritance, and seeking clarification of health implications of results. ConclusionOur finding of low levels of active parent participation during ES disclosures highlights the need to improve patient/parent engagement and understanding in a genetic setting. Practice implicationsClinician communication strategies that could encourage parent participation and understanding include checking for parent understanding, partnership-building, and tailoring ES discussions to address parent concerns and preferences.

Improving Children's cancer pain management in the home setting: Development and formative evaluation of a web-based program for parents

Background and methodsDespite advances in health care, the majority of children undergoing cancer treatment experience pain, particularly in the home setting. Mobile health tools provide a promising avenue to deliver pain management education and information to parents of children receiving cancer treatment. The current study describes the development and formative evaluation of a novel intervention, Cancer-Tailored Intervention for Pain and Symptoms (C-TIPS), which provides empirically-based pharmacological and non-pharmacological pain management information and coping skills training to parents of pediatric cancer patients. C-TIPS is a web-based application including a tailoring algorithm, customization tools, guided diaphragmatic breathing training, relaxation practice, and educational material (COPE modules). Thirty parents of children undergoing chemotherapy treatment for cancer participated in this initial mixed methods pilot study. Participants completed quantitative measures assessing their stress and relaxation ratings and satisfaction with C-TIPS. Formative evaluation and qualitative data were collected using individual and group interviews. ResultsParents reported high satisfaction with both the educational and skills training modules of C-TIPS (ps < 0.001). Parent self-reported stress significantly reduced (p = 0.004) and relaxation increased (p = 0.05) following participation with the skills training module. ConclusionsC-TIPS is a feasible and well-received web-based intervention that promises to improve pain management in children undergoing cancer treatment, improve stress management in parents, and increase parents' knowledge and understanding of their child's cancer treatment. Results from the current study will help make improvements to C-TIPS in preparation for a randomized-controlled trial of this innovative program.

The effectiveness of solution-focused brief therapy for psychological distress among Chinese parents of children with a cancer diagnosis: a pilot randomized controlled trial.

Given the critical role of parental care for pediatric cancer patients, this pilot study evaluated the feasibility and effectiveness of a hospital-based solution-focused brief therapy (SFBT) intervention for reducing psychological distress among parents of pediatric cancer patients in China. Differences between treatment and active control (AC) groups were assessed on dimensions of psychological distress. Parents' level of hope was also assessed. Participants (N = 44) were randomly assigned to SFBT or AC. Parents received four sessions of SFBT twice a week delivered by graduate-level hospital social workers. Pre- and post-intervention assessments measured change in distress (depression, anxiety, and somatization symptoms) of parents as well as their level of hope. Analysis of covariance (ANCOVA) indicated the SFBT group had better outcomes than the AC group on overall distress of somatic, anxiety, depression symptoms and level of hope. Within- and between-group treatment effects reported significantly greater effect of the SFBT group than of the AC group. Considering the inherent limits of a pilot feasibility study, results suggest that SFBT is a feasible, culturally compatible, and promising intervention for alleviating distress among Chinese parents of children with cancer. Additional comprehensive trials are needed to draw more definitive conclusions. SFBT may be beneficial for improving the critical support systems of parents of pediatric cancer patients. Thus, SFBT may have the potential to enhance children's well-being during cancer treatment and recovery.

Social support, flexible resources, and health care navigation

Recent research has focused attention on the role of patients' and clinicians' cultural skills and values in generating inequalities in health care experiences. Yet, examination of how social structural factors shape people's abilities to build, refine, and leverage strategies for navigating the health care system have received less attention. In this paper I place focus on one such social structural factor, social support, and examine how social support operates as a flexible resource that helps people navigate the health care system. Using the case of families navigating pediatric cancer care this study combines in-depth interviews with parents of pediatric cancer patients (N = 80), direct observation of clinical interactions between families and physicians (N = 73), and in-depth interviews with pediatric oncologists (N = 8). Findings show that physicians assess parental visibility in the hospital, medical vigilance, and adherence to their child's treatment and use these judgments to shape clinical decision-making. Parents who had help from their personal networks had more agility in balancing competing demands, and this allowed parents to more effectively meet institutional expectations for appropriate parental involvement in the child's health care. In this way, social support served as a flexible resource for some families that allowed parents to more quickly adapt to the demands of caring for a child with cancer, foster productive interpersonal relationships with health care providers, and play a more active role in their child's health care.

The Experiences of Parents of Pediatric Patients With Acute Lymphoblastic Leukemia, 2 Months After Completion of Treatment.

Diagnosis and treatment of childhood acute lymphoblastic leukemia (ALL) can be a highly stressful time for the entire family. While completion of treatment may bring relief to some families, it may also bring about additional anxieties and fear. The primary objective of this article is to present an analysis of the experiences, emotional states, and support needs of parents of pediatric cancer patients 2 months after treatment completion for ALL. Using a qualitative interpretive description approach, transcripts from interviews with 17 parents from the leukemia/lymphoma program of a large urban pediatric cancer center were analyzed using N-Vivo 10 data analysis software. Parents reported simultaneous feelings of relief and apprehension, changing relationships with their health care team and the experience of returning to a life following treatment. Results highlight the need for support for parents on completion of treatment.

Burden of Parents of Pediatric Cancer Patients in Pediatric-oncological Rehabilitation

Burden of Parents of Pediatric Cancer Patients in Pediatric-oncological Rehabilitation All family members experience high burden in case of paediatric cancer. Family-oriented rehabilitation (FOR) aims to improve the physical and mental situation of the families. We investigated anxiety and depression (HADS) and cancer-related burden of parents (n = 69) before and after FOR and analysed its association with quality of life of the ill children. At beginning of FOR 70 % of the parents showed moderate to high anxiety scores and 47 % moderate to high depression scores. They reported cancer-related burden such as exhaustion, cancer-related fears and a burden of family's daily life due to the cancer disease. At the end of FOR 40 % of the parents showed moderate to high anxiety scores and 30 % moderate to high depression. Cancer-related burden measured with self-developed items also decreased after FOR. Compared to age- and gender-adapted norm values, mothers show significantly higher anxiety and depression scores, whereas fathers show no differences in depression scores compared to norm values at the end of FOR. Quality of life of ill children and anxiety and depression scores in the parents are significantly associated with each other. Results of the study show that parents stabilise after FOR and improve their mental situation. However, the results also underline the need for long-term psychosocial support for all family members.

Mental Health Status of the Parents of Pediatric Cancer Patients

Introduction Cancer is a major cause of morbidity and mortality worldwide. Although not common in children, cancer is an important cause of death in children younger than 14 years (1). The diagnosis of cancer in children imposes high levels of stress on the family and particularly parents and adv

Supporting Caregivers of Children With Acute Lymphoblastic Leukemia via a Smartphone App: A Pilot Study of Usability and Effectiveness.

Smartphone applications are widely used for self-help interventions in adult cancer survivors. However, applications for parents of pediatric cancer patients are limited. We developed an applications to assist parents of children with acute lymphoblastic leukemia. The aim of this study is to evaluate the app's usability and effectiveness in a preliminary way. A stepwise approach and mixed methods were used. The application was initially tested by healthcare providers, and their comments and suggestions were used to develop an updated version. This version was tested by parents of children with acute lymphoblastic leukemia. Comments and nonverbal expressions of parents were recorded during a 2-week pilot test. The qualitative study was followed by a quantitative study using audit log data from the administration portal to understand how parents use the application. Six healthcare providers and 15 parents participated. Parents gained a greater knowledge of leukemia, confidence in caregiving, social support, and information on how to reduce stress. Over usability was rated as stable, useful, simple, and self-explanatory. No software failure occurred. Applications have the potential to support caregivers of pediatric cancer patients. We plan to address limitations and perform an empirical interventional study to examine its clinical effectiveness.