Parents Of Childhood Cancer Survivors Research Articles

Perceived vulnerability related to health in cancer post-treated adolescent in Iran: a content analysis

BackgroundThe prevalence of cancer is increasing, which significantly impacts the health and various aspects of the lives of cancer-post-treated adolescents. Adolescents with cancer have many negative consequences, including increased vulnerability. Therefore, this study aimed to explore the perceived vulnerability of cancer-post-treated adolescents using a deep examination of experiences and perceptions of participants.MethodsThis study was conducted on 18 participants, who were selected based on purposive sampling in 2023 using a qualitative method through a content analysis approach in Iran. A face-to-face and semi-structured individual interview was used to collect data. Inclusion criteria were children aged 11–19 years, with no history of diseases except cancer, at least one year passed since their last treatment and were aware of their disease. Inclusion criteria for other participants were Parents of childhood cancer survivors whose child is under 19 years old. Health care providers that had at least one year of experience working with and caring for pediatric cancer survivors. The research objective, participation principle, and interview recording were explained to the participants before the interview started. The criteria of credibility, dependability, confirmability and transferability were included to support the trustworthiness of data. The data was analyzed using the conventional qualitative content analysis method and MAXQDA10 software was used for data management.ResultsThe participants included 12 cancer-post-treated adolescents, two parents, two nurses, one doctor, and one cancer charity representative. The data analysis identified three categories: “Confusion in early adolescence”, “Psychological turmoil of disease”, and “Physical burden of the disease”. Finally, the latent content was formulated in to a “Perceived vulnerability” overarching theme.ConclusionIdentifying the patient’s perceptions and beliefs is one of the current health problems to improve the quality of life and facilitate the optimal transition from adolescence to adulthood and adult care. Health professionals have an opportunity to address factors that increase survivors’ sense of vulnerability to health problems by correcting knowledge gaps.

Qualitative Analysis of School Re-Entry Experiences of Turkish Survivors of Childhood and Adolescent Cancer: Parental Perspective

This study aimed to explore the school re-entry experiences of Turkish survivors of childhood and adolescent cancer. In this qualitative study, semistructured in-depth interviews were undertaken with parents of childhood cancer survivors who had completed treatment for at least 2 years (n = 20). Interviews were conducted via telephone or video conferencing. The study was conducted and reported according to the COREQ (Consolidated Criteria for Reporting Qualitative Research) guidelines. The components of qualitative rigor were considered to ensure confidence in the methods and data. The average age of parents was 43.20 ± 4.66 years (range 37-55) (n = 20). The mean age of survivors was 8.45 ± 2.03 years at diagnosis and 15.05 ± 2.08 years during the study. The diagnosis of most of the survivors was lymphoma (35%). Four main themes were developed: worry; challenging situations; negative effects of the disease process; and facilitating situations. Parents stated that both children and parents need support during the school re-entry process. This study revealed that survivors may experience problems that make school re-entry difficult. With cooperation between the health team and the school, arrangements should be made to ensure survivors have a positive experience on school re-entry. Pediatric oncology nurses should know survivors' requirements and take action to deliver school re-entry adjustment programs.

Social support experiences of hispanic/latino parents of childhood cancer survivors in a safety-net hospital: a qualitative study

Purpose To describe the social support experiences of Hispanic/Latino parents while caregiving for childhood cancer survivors. Research approach Semi-structured one-on-one interviews were conducted among 15 caregivers from a safety-net hospital in Los Angeles. A thematic analysis approach was used to analyze data. Findings The positive influence of social support throughout their caregiving experience included (1) sharing information-enhanced knowledge, (2) receiving comfort and encouragement, (3) receiving tangible assistance reducing the caregiving burden, and (4) enhancing caregiving empowerment/self-efficacy. Sub-themes regarding the lack of social support included (1) being a single parent and (2) family and friends withdrawing after the child’s cancer diagnosis. Conclusion We found Hispanic/Latino parents strongly value social support as it enables them to have essential resources that support caregiving for their child and themselves. Efforts should ensure that caregivers are routinely screened to identify their supportive needs so that support services for caregivers can be optimized and tailored, as those with a lack of social support may experience excessive caregiver burden.

Impact of COVID-19 on Lifestyle Habits and Emotional State of Childhood Cancer Survivors and Their Parents.

The COVID-19 pandemic and associated social distancing measures affected the physical and emotional state of children and parents worldwide. Survivors of childhood cancer may be particularly vulnerable to these effects. We aimed to evaluate the lifestyle habits and emotional states of childhood cancer survivors and their parents during the COVID-19 outbreak. Lifestyle habits and emotional distress were assessed in 43 childhood cancer survivors (aged 8-21 years) and their parents before and during the COVID-19 lockdown, using the PROMIS anxiety and depression modules and the "Mabat Youth" questionnaire. Most parents (80.5%) reported eating more family meals during home confinement compared to their usual routine. Patients' physical activity levels did not change significantly during confinement, leisure-related screen time nearly doubled (p < 0.001), and sleep duration increased (p = 0.006). Anxiety levels of children (p = 0.045) and parents (p = 0.02) increased during confinement compared to pre-pandemic levels, with no significant changes in depression levels. Contrary to concerns regarding lifestyle habits during the COVID-19 lockdown, eating behaviors of childhood cancer survivors improved, sleep duration increased, and physical activity remained unchanged. Still, screen time increased significantly. Parents of childhood cancer survivors reported higher anxiety levels for themselves and their children during home confinement. Our findings may assist medical and psycho-social teams in guiding parents of cancer survivors during similar circumstances in the future.

Mental health and health behaviors of parents of survivors of childhood cancer in the early COVID-19 pandemic: Exploring the role of intolerance of uncertainty

Abstract Introduction: Parents of survivors of childhood cancer may be particularly vulnerable to the experience of poor mental health amid the COVID-19 pandemic. This study aimed to (1) describe the mental health of parents of childhood cancer survivors; (2) explore the role of intolerance of uncertainty (IU) in mental health; and (3) explore the associations of parent mental health and health behaviors with IU. Methods: A cross-sectional, quantitative assessment of parents of survivors of childhood cancer (younger than 18 years) was conducted between May and June 2020. Participants completed an online questionnaire regarding their mental health (PROMIS anxiety, depression), IU (Intolerance of Uncertainty Scale), and health behaviors. Recruitment was conducted through social media and community organizations using convenience and snowball sampling. Results: Seventy-two participants from 6 countries completed the study (99% mothers, mean age of survivors = 11.4 years). Fifty percent of participants reported that their mental health had declined since the start of the COVID-19 pandemic, whereas 46% reported their mental health did not change. More than half of the participants (56%) reported decreased physical activity and 38% reported increased alcohol use. Exploring associations of parent mental health and health behaviors with IU, parent depression, and hours of exercise emerged as significant predictors (B = 3.62, P &lt; .01; B = –1.58, P &lt; .01, respectively), whereby higher depression and less exercise was associated with higher IU. Conclusions: At the height of the COVID-19 global pandemic, some parents of survivors of childhood cancer experienced poor mental health. IU plays a significant role in mental health outcomes, but this does not translate to health behaviors.

Psychological Impact and Coping Strategies of Hispanic Parents of Children with Cancer: A Qualitative Study.

Throughout the cancer trajectory, parents of childhood cancer survivors (CCSs) may experience mental and social challenges requiring continual adaptation to cancer-induced stress. Using Lazarus and Folkman's Transactional Model of Stress and Coping framework, this qualitative study aimed to describe Hispanic parents' psychological health and explore their coping strategies. Purposive sampling was used to recruit 15 Hispanic caregivers from a safety-net hospital in Los Angeles County. To be eligible, participants had to be: the primary caregiver of a CCS who had completed active treatment, the primary caregiver or child self-identified as Hispanic, and proficient in English or Spanish. The interviews lasted approximately 60 min, were audio-recorded (in English and Spanish), and professionally transcribed. Data were analyzed following a thematic content analysis with deductive and inductive approaches on Dedoose. Participants described high levels of stress and fear when their child was diagnosed with cancer. They also shared experiencing symptoms of social anxiety, post-traumatic stress disorder, and depression. Participants' coping strategies were encompassed by three major themes: problem-focused, emotion-focused, and avoidant coping strategies. Problem-focused coping strategies included self-efficacy, behavioral change, and social support. Emotion-focused coping strategies included religious practices and positive reframing. Avoidant coping strategies included denial and self-distraction. Despite the evident disparities in psychological health for Hispanic parents of CCSs, gaps remain in designing a culturally tailored program to help alleviate the caregiver burden. This study provides insights regarding coping strategies that Hispanic caregivers use to deal with the psychological impact of their child's cancer diagnosis. Our findings also delve into the contextual and cultural factors that impact psychological adjustment.

"You don't accept he's completely ok": a reflexive thematic analysis of parents' roles in monitoring their child's health and symptoms after finishing childhood cancer treatment.

Childhood cancer survival brings continued mental and physical health challenges both for the child and for the family. In this study, we investigated how parents viewed their roles in their child's health and symptom monitoring during the survivorship period. Twenty-one parents of childhood cancer survivors (n = 18 mothers; parent mage = 49.78years, child mage = 18.50years; range = 12-25years), whose children were at least one year off-treatment (m = 3.67years; SD = 2.25; various diagnoses), completed semi-structured interviews. Interviews were recorded, transcribed, and analyzed using reflexive thematic analysis. Analyses generated three themes which reflect roles that parents may adopt in the context of monitoring symptoms in their childhood cancer survivor. "Vigilant Mama and Papa" (theme 1) described parents who expressed a strong sense of responsibility for protecting their child's health during survivorship resulting in careful monitoring of their child's symptoms and health. "Pragmatic Mamas and Papas" (theme 2) described parents who adopted an approach to symptom and health monitoring that emphasized moving past cancer and focusing on the future. Finally, "Encouraging Mamas and Papas" (theme 3) described parents who focused on educating and preparing their child to develop an autonomous approach to health and symptom self-monitoring as they transitioned to survivorship and adulthood. Parents take on varying roles in monitoring their child's symptoms and health after finishing childhood cancer treatment. Understanding the ways in which parents continue to be involved in their child's cancer journey helps researchers develop interventions to support dyadic coping in survivorship.

Abstract B115: A qualitative study on caregiving social support among Hispanic/Latino parents of childhood cancer survivors in a safety-net hospital

Abstract Background: Parents are the primary caregivers throughout their child's cancer journey. As a result, they may experience a shift in their self and social identity both immediately and in the long term after their child is diagnosed with cancer. Insights into Hispanic/Latino parents of childhood cancer survivors' social support is limited, however. This qualitative study aimed to address the existing gap by describing the social support experiences of Hispanic/Latino parents while caregiving. Methods: Caregivers were recruited from a safety-net hospital in Los Angeles County between July to September 2020. Qualitative semi-structured interviews were conducted with 15 Hispanic/Latino caregivers of childhood cancer survivors (in English and Spanish). The interviews were audio-recorded, professionally transcribed, and analyzed following a reflexive thematic analysis approach. Two coders independently reviewed and coded transcripts and used grounded theory methodology elements (e.g., gerund coding and memo-writing) on Dedoose. Results: Two related themes were identified: the positive influence of social support when available and the challenges associated with lack of social support. All caregivers spoke about the positive influence of social support throughout their caregiving experience (both during and after treatment). Participants' descriptions of the influence of social support included (1) information sharing enhanced knowledge, (2) receiving comfort and encouragement, (3) receiving tangible assistance reducing the caregiving burden, and (4) enhancing caregiving empowerment/self-efficacy. The most common form of social support among these caregivers was tangible assistance, which included financial support for groceries, bills, rent, and essential services such as transportation, work hour flexibility, childcare for other children, and help with household maintenance. Sub-themes regarding the lack of social support included (1) being a single parent and (2) family and friends withdrawing after the child's cancer diagnosis. Single parents described juggling multiple roles, including caring for the patient, maintaining financial support for the entire family, and caring for other children while managing their child's illness. One caregiver expressed that "if there were two of us [during treatment], it would have been easier." Conclusion: When a child is diagnosed with cancer, parents are the primary caregivers and the presence or absence of social support may impact their caregiving experience, particularly for Latino/Hispanic caregivers who are medically underserved. The findings of this study indicate that Hispanic/Latino parents strongly value social support as it enables them to have essential resources that support caregiving for their child and themselves. Efforts should ensure that caregivers are routinely screened to identify their supportive needs. In an effort to optimize support services for caregivers, it needs to be tailored as those with a lack of social support may experience excessive caregiver burden. Citation Format: Carol Ochoa, Randall Y. Chan, Lissette Cervantes, Kimberly A. Miller. A qualitative study on caregiving social support among Hispanic/Latino parents of childhood cancer survivors in a safety-net hospital [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B115.

Parents' perceptions and experiences of physical activity in childhood cancer survivors in Singapore: a qualitative study.

The survival rate for childhood cancer has increased with advances in medical care. Along with this comes the growing burden of long-term side effects of cancer treatment and cancer survivorship. Childhood cancer survivors are more likely to be sedentary and have a lower quality of life. Physical activity (PA) can promote health and well-being in childhood cancer survivors, but few studies have explored the role of parents of childhood cancer survivors (PCCS) in promoting PA. This qualitative study aims to explore the perceptions of PCCS in Singapore and the role they may have with regard to PA. Participants were recruited through a local charity via email, social media and posters. One-hour semi-structured interviews were conducted online with seven parents. With consent, the interviews were recorded, transcribed verbatim and analysed using thematic analysis. Our study discussed thematically parents' accounts on (1) the barriers and enablers of PA and (2) the complications of cancer that potentially affect the levels of PA in childhood cancer survivors. Parents reported that childhood cancer negatively affects the quality of life and participation in PA. The determinants of participation in PA were multifaceted, and socioecological and health belief models were used to demonstrate how these factors were interlinked. Participation in PA is influenced at an individual, family, community and societal level. The improved understanding facilitated by this research can be used to shape paediatric cancer care practices in Singapore and guide institutional or national policy interventions.

Fear of cancer recurrence in informal caregivers of childhood cancer survivors

Background. Fear of cancer recurrence is one of the most distressing psychological consequences in cancer survivors and their informal primary caregivers (IPC). IPC of childhood cancer survivors (CCS) are often their mothers, which could intensify fear of cancer recurrence (FCR) and its impact on both IPC and CCS. However, the phenomenon has not been widely described in this specific population. Objective. To summarize and analyze current evidence on the evaluation and management of FCR among IPC of CCS. Method. A narrative review of studies included in four databases (PsycInfo, Medline, CINALH, and Web of Science) with no language or year of publication restrictions. Results. Measures specifically developed to assess FCR among IPC of CCS comprising an interview and a questionnaire with initial psychometric evaluations and two short, online intervention programs based on cognitive-behavioral-contextual therapy were identified (ENGAGE and CASCAdE). Both have demonstrated acceptability in parents of CCS in high-income countries; preliminary evidence also exists of the effectivity of CASCAdE in reducing FCR. Discussion and conclusion. Given the limitations of this area of psychological evaluation, the Fear of Cancer Recurrence Inventory, originally developed for adult cancer survivors, constitutes the most suitable tool for evaluating FCR among IPC of CCS. The CASCAdE program seems a promising intervention for IPC of CSS, although cultural adaptations, evaluations of its acceptability in low- and middle-income countries, and controlled studies in large samples are still required.

Barriers and facilitators of Hispanic/Latino parents caregiving for a childhood cancer survivor: a qualitative study.

This qualitative study aimed to explore Hispanic parents of childhood cancer survivors (CCS) perceptions of facilitators and barriers to their caregiving experience. We conducted semi-structured phone interviews with 15 Hispanic/Latino parents (English and Spanish). Parents were recruited using a purposive sampling method in a safety-net hospital in Los Angeles County from July-September 2020. Interviews were audio-recorded, professionally transcribed, and analyzed in the language they were conducted. Two coders independently coded interviews following reflexive thematic analysis and elements of grounded theory methodology. Most caregivers were mothers caring for leukemia CCS who had finished treatment more than 2years prior. Caregivers expressed gratitude to social workers for introducing and aiding with the application process for safety-net programs that enabled caregivers to focus on their child's care and well-being. Caregivers revealed the importance of supportive communication with the medical team, particularly after their child's treatment was considered complete. All caregivers found caring for a child with cancer overwhelming, and many described deteriorations in their health and well-being. Financial instability, transportation difficulties, and work disruptions were identified as barriers, resulting in caregiver distress. Caregivers also shared the challenges they experienced navigating the healthcare system, seeking care despite lack of legal residency, and staying afloat despite limited employment opportunities. Improving navigation to resources and improving relationships with the medical team may reduce the perceived caregiving burden among Hispanic/Latino caregivers throughout their family's cancer journey.

Parental Preferences Surrounding Timing and Content of Consent Conversations for Clinical Germline Genetic Testing Following a Child's New Cancer Diagnosis.

Clinical genomic testing is increasingly being used to direct pediatric cancer care. Many centers are interested in offering testing of tumors and paired germline tissues at or near the time of cancer diagnosis. We conducted this study to better understand parent preferences surrounding timing and content of consent conversations for clinical germline genetic testing of their children with cancer as a part of real-time cancer care. A seven-question survey developed by the Division of Cancer Predisposition and collaborators at St Jude Children's Research Hospital (St Jude) was distributed to members of the St Jude Patient Family Advisory Council, which included parents of childhood cancer survivors and bereaved parents whose children with cancer had died. Parents were asked to provide free text comments after each question. Qualitative methods were used to derive codes from parent comments, and survey results were depicted using descriptive statistics. The survey was completed by 172 parents. Ninety-three (54%) endorsed an approach for consent conversations ≥ 1 month after cancer diagnosis, whereas 58 (34%) endorsed an approach at 1-2 weeks and 21 (12%) at 1-2 days. Needing time to adjust to a new or relapsed cancer diagnosis and feeling overwhelmed were frequent themes; however, parents acknowledged the urgency and importance of testing. Parents desired testing of as many cancer-related genes as possible, with clinical utility the most important factor for proceeding with testing. Most parents (75%) desired germline results to be disclosed in person, preferably by a genetic counselor. Parents described urgency and benefits associated with germline testing, but desired flexibility in timing to allow for initial adjustment after their child's cancer diagnosis.

Parent perceptions of their child’s and their own physical activity after treatment for childhood cancer

PurposeParents are important facilitators of physical activity for children, yet little is known about the perceptions of parents of childhood cancer survivors. We investigated parent perceptions of their own and their child’s physical activity levels after cancer treatment and examined associations with clinical, demographic, and psychosocial factors.MethodsWe conducted a cross-sectional survey among 125 parents and 125 survivors. Parents reported on the perceived importance of their child being physically active and concerns regarding exercising after cancer treatment.ResultsParents and survivors self-reported median (range) of 127.5 (0–1260) and 220 (0–1470) min/week of moderate-to-vigorous physical activity. Most parents (n = 109, 98%) believed that physical activity was highly important for their child. Some parents (n = 19, 17%) reported concerns, most commonly regarding exercise safety (n = 7, 22%). Parents were more likely to perceive that their child should increase physical activity if their child was an adolescent and had high body fat percentage.ConclusionsPhysical activity levels varied widely among survivors, reflecting factors including parents’ lifestyles, limited understanding of exercise benefits and perceptions of risk. Given survivors’ insufficient physical activity levels and sedentary behaviour among families, embedding physical activity promotion into health systems and follow-up support could benefit the entire family unit.

Providing Psychological Support to Parents of Childhood Cancer Survivors: 'Cascade' Intervention Trial Results and Lessons for the Future.

Simple SummaryWe assessed a new group-based cognitive behavior therapy videoconferencing program to support parents of childhood cancer survivors. The trial allocated parents to three groups: Cascade, peer-support, waitlist. Cascade achieved good parent engagement. We successfully delivered Cascade to participants who lived >3200 km apart. Any technical difficulties caused only minor disruptions. Most Cascade parents were satisfied and reported experiencing benefits from the program. However, Cascade did not improve our main outcomes, including parents’ quality of life, depression and anxiety. Cascade parents reported a short-term improvement in their confidence to use the skills they learnt, but this did not translate into actual use. After six months, Cascade parents felt their child survivor had lower psychological health than waitlisted parents. Our findings show that while some parents find Cascade helpful, it may not suit everyone. We used these findings to further improve Cascade and will trial the new version in future.We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome was parents’ health-related quality of life (PedsQL-Family Impact/EQ-5D-5L) six months post-intervention. Parents also reported their anxiety/depression, parenting self-agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child’s quality of life. Seventy-six parents opted in; 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents’ health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre-enrolment. We used these findings to improve Cascade and will trial the new version in future.

Perceptions of Infertility Risk Among Chinese Parents of Children with Cancer: A Qualitative Study.

Objective: Anticancer treatment may be associated with damage to the reproductive organs and risk of infertility in children with cancer. The collectivist cultural norms of Asian societies may lead Chinese parents to have unique concerns regarding infertility. This qualitative study explored the perceptions of infertility risk and parenthood among parents of childhood cancer survivors in Hong Kong. Methods: Thirteen parents were recruited via a snowball sampling approach from a nongovernmental organization in Hong Kong, representing nine survivors of childhood cancer (leukemia n = 5, solid tumors n = 4). The in-depth semistructured interviews were audiotaped and transcribed verbatim. A thematic analysis was performed using ATLAS.ti 8. Results: Parents mostly perceived their children's fertility status as a distant concern (n = 11, 85%) but emphasized the need for timely information from clinicians when their children reach young adulthood (n = 8, 62%). They reported receiving inconsistent fertility information from different oncology practitioners (n = 9, 69%). A few parents acknowledged that under the influence of the Chinese culture, their children, especially sons, have an important duty to continue the family lineage. However, even if the cancer treatment were associated with infertility risk, almost all parents (n = 12, 92%) stated that it would still not affect their willingness to let their child undergo treatment because survival and cure were still their highest priority. Conclusion: Our findings suggest the need to proactively provide fertility information to parents both during active treatment and when survivors reach reproductive age. Future studies should evaluate the benefits of developing culturally relevant decision-making aids to address parents' informational needs regarding fertility issues.

Parental adjustment following their child's completion of acute lymphoblastic leukemia treatment.

Few studies haveexamined parent and family adaptation in the early period following the end of childhood cancer treatment. We examined parent adjustment at the end of their child's treatment for acute lymphoblastic leukemia (ALL). Parents of childhood cancer survivors (CCS), who were 3months post-ALL treatment, and parents of typically developing children completed measures of psychological and family functioning. Parents of CCS also completed distress and posttraumatic stress symptom (PTSS) questionnaires related to their child's cancer experience. One hundred twenty-nine parents were recruited: 77 parents of CCS and 52 comparison parents. Overall mean psychological symptoms of depression, anxiety and stress, and family functioning were within normal limits for both groups. Parents of CCS endorsed higher scores for stress, depression, and family problems; however, mean scores for emotional distress were low for both groups, in particular the comparison group. Parents of CCS endorsed low rates of PTSS. Fifty-one percent of parents of CCS scored above the distress thermometer (DT-P) clinical cutoff (>4), with items elevated across all six DT-P domains. However, most parents did not indicate a wish to speak to a health professional about their symptoms. Specialist psychosocial intervention may be indicated for only a subset of parents at the end of treatment. As per psychosocial standards of care, effective screening at this timepoint is warranted. Further examination of appropriate timing of psychosocial information and support services that are tailored to parents' circumstances is needed. eHealth approaches may be appropriate.

Health service and medication use of parents of childhood cancer survivors: a controlled comparison study

Background Parents of childhood cancer survivors may be vulnerable to experiencing poor health outcomes, but little is known about how these parents use healthcare. This study investigated the nature and extent of survivors’ parents’ healthcare and medication use relative to a comparison group. We also examined whether demographic or cancer-related factors were related to healthcare use and whether healthcare use was associated with parents’ general functioning. Methods We conducted a cross-sectional study involving 55 parents of cancer survivors recruited through eight Australian hospitals, and 135 parents of children without a cancer diagnosis, through an online recruitment platform. Participants responded to a questionnaire assessing their health service usage, regular medications, general functioning (engagement activities including work/study) and anxiety and depression symptoms (using PROMIS short forms). We performed regression analysis to determine factors related to healthcare and medication use in parents of survivors. Results More parents of survivors reported accessing mental health services than comparison parents (56% vs. 33%, p=.003), mainly due to their use of social workers. Fewer parents of survivors reported accessing other community health services, particularly general practitioners (51% vs. 78%, p<.001). Having a child survivor who was male was associated with greater use of community health services (B= −0.67, p=.008). No other demographic or cancer-related variables were associated with health service use. Health service use was not associated with general functioning, but greater medication use was associated with higher anxiety scores (B = 1.41, p=.008). Conclusion Parents of childhood cancer survivors showed different patterns of health service use relative to comparison parents, but the extent of their use was not significantly linked with demographic or cancer-related variables. Comprehensive assessment of parents’ needs in clinical encounters remains vital to identify and appropriately match support needs with available services.

Fear of progression in parents of childhood cancer survivors: prevalence and associated factors

PurposeRecent research demonstrated that fear of progression (FoP) is a major burden for adult cancer survivors. However, knowledge on FoP in parents of childhood cancer survivors is scarce. This study aimed to determine the proportion of parents who show dysfunctional levels of FoP, to investigate gender differences, and to examine factors associated with FoP in mothers and fathers.MethodsFive hundred sixteen parents of pediatric cancer survivors (aged 0–17 years at diagnosis of leukemia or central nervous system (CNS) tumor) were consecutively recruited after the end of intensive cancer treatment. We conducted hierarchical multiple regression analyses for mothers and fathers and integrated parent-, patient-, and family-related factors in the models.ResultsSignificantly more mothers (54%) than fathers (41%) suffered from dysfunctional levels of FoP. Maternal FoP was significantly associated with depression, a medical coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and lower family functioning (adjusted R2 = .30, p < .001). Paternal FoP was significantly associated with a lower level of education, depression, a family coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and fewer siblings (adjusted R2 = .48, p < .001).ConclusionsFoP represents a great burden for parents of pediatric cancer survivors. We identified associated factors of parental FoP. Some of these factors can be targeted by health care professionals within psychosocial interventions and others can provide an indication for an increased risk for higher levels of FoP.Implications for Cancer SurvivorsPsychosocial support targeting FoP in parents of childhood cancer survivors is highly indicated.

Understanding decisions to participate in genomic medicine in children's cancer care: A comparison of what influences parents, health care providers, and the general community.

The emerging role of genomically guided precision medicine in pediatric cancer care presents significant clinical, practical, and ethical challenges. We investigated the factors that influence decision-making in genomic medicine from the perspective of different stakeholders in the context of difficult-to-treat childhood cancer. Health care providers (HCPs), parents of childhood cancer survivors, and general community members completed an online discrete choice experiment survey. Respondents considered whether to recommend (HCPs) or choose (parents/community) a genomically guided approach to pediatric cancer treatment. Respondents completed eight choice questions varying by survival benefit, prognosis, likelihood of finding a target, quality of life (QoL), HCP/parent preference, need for biopsy, cost, and who pays. Data were analyzed using a probability regression model, with findings expressed as relative importance, stated importance, and marginal willingness to pay (mWTP). One hundred twenty-six HCPs, 130 parents, and 531 community members participated. The probability of recommending/choosing genomically guided treatment increased significantly with better prognosis, survival benefit, improvements in QoL, and decision-making partner support. It decreased with increasing costs and if parents paid for treatment. HCPs were more responsive to all factors but were most influenced by survival outcomes, and parents and community members by QoL. In contrast to these forced choice preference results, HCPs stated they were most influenced by QoL and community members by survival. Our findings support the primacy of QoL in genomic decision-making, with some differences across stakeholders in the other factors influencing decision-making. These findings emphasize the need for high-quality information giving and communication to support genomic medicine choices.

Parental Cancer-related Information Seeking, Health Communication and Satisfaction with Medical Providers of Childhood Cancer Survivors: Differences by Race/Ethnicity and Language Preference

For childhood cancer survivors (CCS), parents play an important role in communicating with providers and conveying patient’s needs. This exploratory study examined the prevalence of cancer-related information-seeking among parents of CCS and investigated the association between parents’ race/ethnicity and language preference with health communication and satisfaction with child’s medical providers. One hundred and sixty CCS and their parents from two hospitals in Los Angeles County were recruited from the SEER registry. Multivariable logistic regression analyses assessed associations between parents’ race/ethnicity and language preference and their health communication with their child and with their child’s medical care providers. Among the parents, 29% were Spanish-speaking Hispanics, 27% English-speaking Hispanics, and 43% English-speaking non-Hispanics. Regardless of language preference, Hispanic parents were more likely than non-Hispanic parents to receive health information about their CCS’s cancer from hospital sources versus the internet. There was no difference by ethnicity/language in parent satisfaction with their CCS’s medical provider. Spanish-speaking Hispanic parents were more likely to report talking to their CCS about the need for cancer-related follow-up care compared to non-Hispanic English-speaking parents. These findings point to the potential importance of parents’ ethnicity and language for sources of health information and frequency of communication with their CCS about their cancer care.