Universal assessment and tiered intervention: A model of care to meet the pediatric oncology psychosocial standard of care for school support.

OBJECTIVE: The feasibility and acceptability of a tiered intervention model of school intervention services was investigated in response to the publication of evidence-based Psychosocial Standards of Care for Children with Cancer and their Families. METHOD: Children with newly diagnosed malignancy or transitioning to long-term survivorship care were eligible. Families received universal school needs assessment and intervention targeted at the level of risk identified. Academic risk and resource utilization data collected over 1 year were used to evaluate model feasibility and surveys evaluated family and medical provider satisfaction with the model. RESULTS: One hundred and eight children were enrolled and had academic risk assessed at enrollment as high (25%), moderate (44.4%) or low (30.6%) risk. School liaison staff time spent providing intervention was related to the level of risk. 54.6% of patients reported a decrease in risk status at the end of 1 year of intervention. Parents (94%) and medical providers (100%) chose responses of "agree" or "strongly agree" when asked if they were satisfied with the intervention received over the year. CONCLUSIONS: The tiered model of care identifies the students with the highest need for intervention, allows for more targeted use of resources, and successfully meets the Psychosocial Standard of Care for academic needs.

CNS-Directed Cancer Treatment and Child Adjustment: Moderating Effects of Maternal Parenting.

OBJECTIVE: The aim of this study was to examine whether maternal parenting behaviors (i.e., warmth, behavioral/psychological control) moderate the association between central nervous system (CNS)-directed treatment and adjustment among pediatric cancer survivors at 3 years post-diagnosis or relapse. METHODS: Three years after their child's cancer diagnosis or relapse, mothers (N = 84) reported on their child's academic and social competence, as well as their internalizing and externalizing problems. Children (N = 84; Mage = 13.21 years, 52.4% male) reported on maternal parenting behaviors. Using medical chart data, children were separated into CNS (i.e., received cranial radiation, intrathecal chemotherapy, and/or neurosurgery; N = 45) or non-CNS-directed treatment (N = 39) groups. Twelve moderation models were tested when examining two-way interactions between CNS treatment group and maternal parenting behaviors. RESULTS: Children in the CNS-directed treatment group demonstrated significantly worse academic and social competence. Moderation analyses revealed four significant two-way interactions between CNS treatment group and maternal parenting behaviors when predicting children's adjustment. High levels of maternal behavioral control buffered the negative impact of CNS-directed treatment on children's social competence. In addition, maternal warmth had a contrasting effect, as CNS-directed treatment was associated with worse academic competence at high levels of warmth. Analyses with psychological control revealed that low levels of this parenting style were not protective against internalizing or externalizing problems among those with CNS-directed treatment. CONCLUSIONS: Children who receive CNS-directed treatment may benefit from a different pattern of parenting during early cancer survivorship. Findings highlight the importance of considering the broader family context when conceptualizing the impact of illness-related factors on adjustment among pediatric cancer survivors.

End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families.

OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. METHODS: Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. RESULTS: Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. SIGNIFICANCE OF RESULTS: Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.

Coping Trajectories and the Health-Related Quality of Life of Childhood Cancer Survivors.

OBJECTIVE: To identify coping trajectories from diagnosis through survivorship and test whether particular trajectories exhibit better health-related quality of life (HRQOL) at 5 years post-diagnosis. METHODS: Families of children with cancer (ages 5-17; M = 10.48, SD = 4.03) were recruited following a new diagnosis of cancer (N = 248). Three follow-up assessments occurred at 1-year (N = 185), 3-years (N = 101), and 5-years (N = 110). Mothers reported on children's coping using the Responses to Stress Questionnaire for Pediatric Cancer. Survivor HRQOL was measured at 5-year follow-up using self-report on the PedsQL 4.0. Longitudinal patterns of coping were derived using Latent Class Growth Analysis and mean-levels of survivor-report HRQOL were compared across classes. RESULTS: Two primary control coping trajectories emerged, "Moderate and Stable" (50%) and "Low-moderate and Decreasing" (50%), with no significant differences in HRQOL across trajectories. Three secondary control coping trajectories emerged, "Moderate-high and Increasing" (54%), "Moderate and Stable" (40%), and "High and Increasing" (6%), with survivors in the last trajectory showing better HRQOL. Two disengagement coping trajectories emerged, "Low and Stable" (85%) and "Low and Variable" (15%), with no significant differences in HRQOL across trajectories. CONCLUSIONS: Coping trajectories were relatively stable from diagnosis to 5 years. A small group of survivors with high and increasing secondary control coping over time, per mother-report, reported better HRQOL. Future research should consider tailoring coping interventions to children with cancer to improve survivors' HRQOL.

Longitudinal understanding of prognosis among adolescents with cancer.

OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.

A quest for meaning: A qualitative exploration among children with advanced cancer and their parents.

OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents. METHODS: As part of a larger study examining shared decision-making near the end of life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis. RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.

Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer?

It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.

Grief and growth in bereaved siblings: Interactions between different sources of social support.

The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings' grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3-12 months after a child's death. Bereaved siblings were 8-18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record

Maternal Coping and Depressive Symptoms as Predictors of Mother-Child Communication About a Child's Cancer.

OBJECTIVE: This study sought to identify possible associations between maternal coping and depression and subsequent mother-child communication about cancer following the child's diagnosis. METHOD: Mothers (N = 100) reported on coping and depressive symptoms shortly after the child's diagnosis (M = 1.9 months). Subsequently, we observed children (age 5-17 years; M = 10.2 years; 48% female; 81% White) and mothers discussing cancer and coded maternal communication. RESULTS: Higher primary and secondary control coping, and lower depressive symptoms, were generally correlated with more positive, and less harsh and withdrawn communication. In regression models, higher primary control coping (i.e., coping efforts to change the stressor or one's emotional reaction to the stressor) independently predicted less withdrawn communication, and depressive symptoms mediated relations between coping and harsh communication. CONCLUSIONS: Maternal primary control coping and depressive symptoms predict mothers' subsequent harsh and withdrawn communication about cancer.

Anticipatory Guidance and Psychoeducation as a Standard of Care in Pediatric Oncology.

The aim of this review was to critically evaluate the literature on anticipatory guidance and psychoeducation for youth with cancer and their caregivers. Twenty-one publications were identified. Overall, psychoeducation efforts and interventions were well-liked and accepted by patients and caregivers, improved patient and family knowledge about childhood cancer, and increased patient's health locus of control. A number of modalities are effective in giving families anticipatory guidance, provided the content and delivery are matched to the needs and preferences of individual patients and caregivers. Evidence supports a strong recommendation for psychoeducation for youth with cancer and their families.

Children and adolescents coping with cancer: self- and parent reports of coping and anxiety/depression.

OBJECTIVE: The diagnosis and treatment of cancer present children and adolescents with significant stress. However, research on the ways that children and adolescents cope with cancer-related stress has not yielded clear findings on the efficacy of different coping strategies, and has been limited by reliance primarily on self-reports of both coping and distress. To address this gap, the current study used a control-based model of coping to examine self- and parent reports of child/adolescent coping and symptoms of anxiety and depression in a sample of children with cancer. METHOD: Children and adolescents (5 to 17 years old) and their parents were recruited near the time of a child's diagnosis or relapse of cancer (M = 1.30 months postdiagnosis). Child self-reports (n = 153), mother reports (n = 297), and father reports (n = 161) of children's coping and symptoms of anxiety/depression were obtained. RESULTS: Bivariate correlations revealed significant associations for secondary control coping (efforts to adapt to source of stress; e.g., acceptance, cognitive reappraisal) and disengagement coping (e.g., avoidance, denial) with anxiety/depression within and across informants. Linear multiple regression analyses indicated that secondary control coping accounted for unique variance in symptoms of anxiety/depression both within and across informants. CONCLUSIONS: Secondary control coping appears important for children and adolescents during early phases of treatment for cancer, and it may serve as an important target for future interventions to enhance adjustment in these children.

Longitudinal evaluation of a pediatric palliative care educational workshop for oncology fellows.

PURPOSE: Health care providers have reported inadequate training, poor institutional support, and discomfort in managing pediatric end-of-life (EOL) issues. As a result, the transition to palliative care may be late and abrupt, and children may experience significant suffering at EOL. In this pilot study, we developed and longitudinally evaluated the efficacy of a pediatric palliative care workshop to enhance training for medical fellows. METHODS: Thirty-two pediatric oncology fellows participated in a day-long workshop on palliative care, including topics on pain and symptom management, ethics, communication, and grief. Barriers, attitudes, and knowledge with regard to pediatric palliative care were assessed immediately before the workshop and 6 and 12 months later. Knowledge was also assessed immediately after the workshop. Twenty fellows completed all assessments. RESULTS: At 6 and 12 months, staff discomfort with death and lack of knowledge were the most frequently cited barriers to providing effective EOL care. Perceived competence and comfort in EOL care improved over time, while beliefs remained relatively open and stable. Overall knowledge of pediatric palliative care improved post-workshop and at 6 months, then stabilized. Knowledge of general pediatric issues, ethics, and communication did not change, while knowledge of pain management, symptom management, and grief showed initial improvement then varying patterns of change over time. CONCLUSIONS: Although perceived competence and comfort with palliative care improved, the workshop did not uniformly produce lasting improvements in knowledge. Sustained knowledge will likely require more intensive training in palliative care. Continued research and evaluation of similar educational programs are needed.

Fathers of children with cancer: involvement, coping, and adjustment.

INTRODUCTION: This study examined the role of fathers caring for children with cancer. Psychological adjustment, coping, and work patterns of mothers and fathers were described. METHOD: Twenty fathers of children with cancer were compared with 20 mothers of children with cancer and 20 control fathers of healthy children. Questionnaire data were collected regarding coping, parental adjustment, child adjustment, and family involvement. RESULTS: Fathers did not differ from mothers or control fathers in terms of psychological adjustment or coping. However, fathers of children with cancer spent more hours at work and more hours caring for children than did control fathers. Paternal adjustment was significantly related to child adjustment only when the child had cancer. Coping was related to work outside the home for fathers and adjustment for mothers. DISCUSSION: Models of family adaptation may be different for fathers and mothers. Treatment teams must attend to the unique needs of fathers.

Evaluation of a pediatric palliative care educational workshop for oncology fellows.

BACKGROUND: Recent efforts have focused on improving pediatric palliative care to relieve physical and psychological suffering throughout the course of illness, as well as to improve care at the end-of-life (EOL). One area of attention has been medical training, as healthcare providers have often reported feeling ill-equipped to manage EOL issues. As a pilot study, we developed and evaluated a daylong educational workshop on pediatric palliative care for oncology fellows. PROCEDURE: Fellows (N = 32) from 20 hospitals participated in one of two workshops covering palliative care topics, such as pain/symptom management, communication, ethics, and bereavement. Training, knowledge, behavior, and attitudes regarding pediatric palliative care were assessed before the workshop, and knowledge was re-assessed immediately afterwards. RESULTS: Fellows reported a general lack of training in EOL care, and only 41% rated their education as at least "somewhat" adequate. Colleagues and personal experience were more often sources on EOL care, rather than formal classes or textbooks. Although fellows reported open attitudes toward palliative care, such as involving adolescents in decision-making, only half felt comfortable in the presence of a dying person. Fewer than half felt comfortable providing EOL care, managing families' expectations, or knowledgeable enough to discuss hospice with patients/families. Following the workshop, knowledge of palliative care increased significantly from 75 to 85% correct. CONCLUSIONS: Fellows reported open beliefs about palliative care, but acknowledged weaknesses in their training and level of competence. The workshop showed efficacy in improving knowledge, but additional research is needed to evaluate larger educational initiatives and their long-term impact on clinical services and family satisfaction.