Measuring neurobehavioral side effects of corticosteroids in pediatric acute lymphoblastic leukemia: A scoping review.

Corticosteroids are essential to curative acute lymphoblastic leukemia (ALL) treatment, yet have significant neuropsychiatric side effects that decrease quality of life for patients and families. We conducted a scoping review, following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, to describe the existing measurement tools used to evaluate neurobehavioral side effects of corticosteroids in pediatric ALL. From various databases and registers, 4047 studies were identified. Twenty-four articles met inclusion criteria. Clinical assessment was most used to evaluate these symptoms. Twelve validated measures were identified. Existing data about neuropsychiatric side effects of corticosteroids in pediatric ALL are extremely heterogeneous, creating challenges for standardized assessment and management.

Psychometric properties of the Swedish version of the Parenting Concerns Questionnaire in parents with cancer.

BACKGROUND AND PURPOSE: Parenting concerns can be a major source of distress for patients with cancer who are parents of dependent children; however, these are often not addressed in health care. The Parenting Concerns Questionnaire (PCQ) is an instrument designed to assess parents' worries about the impact of cancer on their children and their ability to parent during this time. The Swedish version of the PCQ has, however, not been evaluated. This study therefore aimed to examine the psychometric properties of the PCQ in a sample of Swedish parents with cancer. MATERIAL AND METHODS: A sample of 336 patients with cancer having dependent children (≤18 years) were included in a cross-sectional web-based survey. Participants completed questionnaires assessing parenting concerns, depression, anxiety, and stress symptoms (DASS); self-efficacy, family functioning (FAD-GF); and sociodemographic and clinical characteristics. Descriptive analyses, as well as reliability and validity analyses, were conducted followed by a confirmatory factor analysis of the factor structure proposed by the authors of the original version of the PCQ. RESULTS: The majority were mothers (94.9%) with breast cancer (66.4%) aged 40-50 years (59.5%). The results showed evidence for convergent, criterion, and known group's validity, but the original three-factor structure of the PCQ was not fully supported by confirmatory factor analysis. INTERPRETATION: Evaluating parenting concerns may be an important step towards identifying patients who could benefit from targeted psychosocial interventions. However, the PCQ may require some further refinement to fully capture the breadth of parenting concerns in parents with cancer in different settings.

Validation of the Psychosocial Assessment Tool Sibling Module Follow-Up Version.

OBJECTIVE: Psychosocial screening is recommended to connect siblings of youth with cancer to psychosocial services, but the lack of validated sibling-specific screening tools is a barrier to routine screening. The current study aimed to validate and establish a clinical cutoff for the recently developed Psychosocial Assessment Tool (PAT) Sibling Module follow-up version to address this barrier. METHODS: Parents (N = 246) completed the PAT Sibling Module follow-up version for all siblings within their families ages 0-17 years (N = 458) at three time points between 6- and 24-month post-cancer diagnosis. For one target sibling within each family aged 8-17 years, parents also completed the Strengths and Difficulties Questionnaire, and the target sibling completed the Child PTSD Symptom Scale. Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity. Receiver operator characteristic analyses were used to establish a maximally sensitive and specific clinical cutoff. RESULTS: Internal consistency was acceptable for all age versions (Kuder-Richardson 20s ≥ 0.79), except for the ages 0-2 version, which had low internal consistency at 18 months post-diagnosis (Kuder-Richardson 20 = 0.57). Convergent (r values >0.7, p values <.001) and predictive (r values >0.6, p values <.001) validity were strong at each time point. An optimal clinical cutoff of 0.32 was identified (range: 0.00-1.00). CONCLUSIONS: The PAT Sibling Module follow-up version is a reliable and valid screener for sibling psychosocial risk following cancer diagnosis. Validation of a sibling-specific screener and establishment of a clinical cutoff are necessary first steps to addressing siblings' unmet psychosocial needs and improving trajectories of sibling functioning.

Initial validation of a new psychosocial screener for siblings of youth with cancer: The Psychosocial Assessment Tool Sibling Modules.

OBJECTIVE: Psychosocial screening can facilitate the identification of families who have difficulty adjusting to and managing serious pediatric illness. Despite siblings' roles within the family and increased psychosocial risk, a systematic approach to screening siblings of youth with cancer remains rare. One barrier to systematic sibling screening is the lack of a validated screener. We aimed to establish initial validity of the new parent-reported Psychosocial Assessment Tool (PAT) Sibling Modules for siblings ages 0-2, 3-4, 5-9, and 10+. METHODS: Families (N = 64) completed the PAT Sibling Modules and the Strengths and Difficulties Questionnaire (SDQ) regarding siblings' functioning at cancer diagnosis (13-23 items, depending on age version) and 6 months later (17-42 items). Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity of the PAT Sibling Modules. RESULTS: Baseline and follow-up versions of the modules have strong internal consistency (Kuder-Richardson 20 range: 0.82-0.93) and convergent validity at diagnosis (r-values ≥0.4, p-values <0.01) and follow-up (r-values >0.4, p-values <0.05). Predictive validity was supported by significant correlations between baseline PAT Sibling Module scores and 6 month SDQ scores (r = 0.86, p < 0.001). CONCLUSIONS: Findings provide initial evidence that the PAT Sibling Modules are valid measures of sibling psychosocial risk. Availability of a validated screener is a first step toward addressing siblings' unmet psychosocial needs.

Risk factors for steroid-induced affective disorder in children with leukemia.

Corticosteroids are essential to treating childhood acute lymphoblastic leukemia (ALL), and can cause significant neuropsychiatric side effects. This retrospective chart review is a preliminary exploration of characteristics associated with psychiatry consultation and steroid-induced affective disorder (SIAD) during ALL treatment. Of 125 ALL patients (ages 1-10 years), 56 (44.8%) received psychiatry consultation. Thirty-nine (31.2%) of the total cohort were diagnosed with SIAD. SIAD was significantly associated with family psychiatric history, but not with steroid exposure, CNS radiation, sociodemographic factors, developmental delay, Trisomy 21, or prior psychiatric history. Gathering family psychiatric history may help identify children at increased risk of SIAD.

Disparities in pediatric psychosocial oncology utilization.

BACKGROUND: Integratedbehavioral health models have been proposed as care delivery approaches to mitigate mental health disparities in primary care settings. However, these models have not yet been widely adopted or evaluated in pediatric oncology medical homes. METHODS: We conducted a retrospective cohort study of 394 children with newly diagnosed cancer at Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCH) from April 2013 to January 2017. Baseline sociodemographic characteristics and psychiatry utilization outcomes at 12 months following diagnosis were abstracted from the medical record. The severity of household material hardship (HMH), a concrete poverty exposure, at diagnosis and race/ethnicity were characterized by parent report using the Psychosocial Assessment Tool 2.0 (PAT). Associations between sociodemographic characteristics and receipt of psychiatry consultation were assessed with multivariable logistic regression models. RESULTS: Among 394 children, 29% received a psychiatric consultation within 12 months postdiagnosis. Of these, 88% received a new psychiatric diagnosis, 76% received a psychopharmacologic recommendation, and 62% received a new behavioral intervention recommendation. In multivariable logistic regression adjusting for age, cancer diagnosis, and PAT total score, there was no statistically significant association between HMH severity or household income and psychiatry utilization. Children who identified as racial/ethnic minorities were significantly less likely to receive a psychiatry consultation (OR = 0.48, 95% CI = 0.27-0.84). CONCLUSIONS: In a pediatric oncology medical home with an integrated behavioral health model, socioeconomic status was not associated with disparate psychiatry utilization. However, there remained a profound racial/ethnic disparity in psychiatry utilization, highlighting the need for additional research and care delivery intervention.

Burnout in psychosocial oncology clinicians: A systematic review.

OBJECTIVE: Few studies have examined burnout in psychosocial oncology clinicians. The aim of this systematic review was to summarize what is known about the prevalence and severity of burnout in psychosocial clinicians who work in oncology settings and the factors that are believed to contribute or protect against it. METHOD: Articles on burnout (including compassion fatigue and secondary trauma) in psychosocial oncology clinicians were identified by searching PubMed/MEDLINE, EMBASE, PsycINFO, the Cumulative Index to Nursing and Allied Health Literature, and the Web of Science Core Collection. RESULTS: Thirty-eight articles were reviewed at the full-text level, and of those, nine met study inclusion criteria. All were published between 2004 and 2018 and included data from 678 psychosocial clinicians. Quality assessment revealed relatively low risk of bias and high methodological quality. Study composition and sample size varied greatly, and the majority of clinicians were aged between 40 and 59 years. Across studies, 10 different measures were used to assess burnout, secondary traumatic stress, and compassion fatigue, in addition to factors that might impact burnout, including work engagement, meaning, and moral distress. When compared with other medical professionals, psychosocial oncology clinicians endorsed lower levels of burnout. SIGNIFICANCE OF RESULTS: This systematic review suggests that psychosocial clinicians are not at increased risk of burnout compared with other health care professionals working in oncology or in mental health. Although the data are quite limited, several factors appear to be associated with less burnout in psychosocial clinicians, including exposure to patient recovery, discussing traumas, less moral distress, and finding meaning in their work. More research using standardized measures of burnout with larger samples of clinicians is needed to examine both prevalence rates and how the experience of burnout changes over time. By virtue of their training, psychosocial clinicians are well placed to support each other and their nursing and medical colleagues.

What do surviving children wish for from a dying parent? A qualitative exploration.

Legacy may play an important role in how children integrate the loss of a parent. Sixteen adults (19-40 years old, 69% women) who experienced the death of a parent from an illness before age 12 were interviewed, exploring legacies from their deceased parent. Transcribed interviews were iteratively analyzed by three independent coders. Extracted themes described their experiences and wish for remembrances and specific communication left for them, information about the parent's values and feelings about them, and personal possessions. This study provides novel data about legacies that bereaved children wish for in adulthood.

Parental psychological distress and cancer stage: a comparison of adults with metastatic and non-metastatic cancer.

PURPOSE: Parents with cancer have unique and often under-recognized psychological distress about the impact of their illness on their children. Relatively little is known about how parenting concerns may differ among patients by cancer stage. METHODS: This is a secondary data analysis of 203 adults with cancer who had children < 18 years old from two geographically distinct areas. We used an analysis of covariance to estimate the mean differences in PCQ, depression symptom severity and anxiety symptom severity (Hospital Anxiety and Depression Scale, HADS) scores between participants with metastatic and non-metastatic disease, and Pearson's correlation coefficients to assess associations between HADS and PCQ scores by cancer stage. RESULTS: Seventy-two percent of participants (n = 146) had metastatic solid tumor cancer. In adjusted analyses, mean PCQ scores did not significantly differ between parents with metastatic and non-metastatic disease (2.0 vs. 2.2, p = 0.06). Differences in mean PCQ scores were driven by a single question concerning the impact of death on children (2.3 vs. 2.9, p = 0.004). Mean HADS scores did not significantly differ between groups, although PCQ scores explained a greater amount of variance in HADS scores for the metastatic group as compared to the non-metastatic group. CONCLUSIONS: With the exception of concerns about death, intensity of parenting concerns, as measured by the PCQ, was similar between parents with metastatic and non-metastatic cancer. However, parenting concerns may be more strongly linked to overall psychological distress in patients with metastatic disease. Further research is needed to clarify how parenting concerns uniquely relate to advanced stage illness.

The multidisciplinary pediatric psycho-oncology workforce: A national report on supervision for staff and training opportunities.

OBJECTIVE: This paper presents data on licensure/certification status, supervision of multidisciplinary pediatric psychosocial staff, and training opportunities in pediatric cancer programs in the United States, data that are critical to provide care aligned with the Standards of Psychosocial Care in Pediatric Cancer (Psychosocial Standards). METHODS: An online survey of psychosocial care consistent with the Psychosocial Standards was completed from a national sample of pediatric cancer programs (144/200). Licensure/certification status, availability and format of supervision for multidisciplinary staff (social workers, psychologists, psychiatrists, child life specialists/recreational therapists), and types and number of psychosocial trainees were reported. RESULTS: Nearly all pediatric psychosocial providers were licensed/certified. Peer consultation was the most frequently endorsed form of staff supervision although a sizeable group of centers reported no systematic ongoing supervision. Trainees in social work and child life were most common although the size of trainee cohorts is generally small. Psychosocial trainees are more prevalent in sites with pediatric hematology/oncology medical fellowship programs and in larger programs. CONCLUSIONS: A properly trained and supported psychosocial workforce is essential to providing evidence-based care consistent with the Psychosocial Standards. Psychosocial providers are appropriately licensed. However, supervision opportunities are variable and may be inadequate for the intensity of the work. It is important to address the limited opportunities for trainees in pediatric cancer programs, which may influence the pipeline for ongoing and future work in this area.

Feasibility of systematic poverty screening in a pediatric oncology referral center.

BACKGROUND: Based on the strong link between poverty and child health outcomes, both the American Academy of Pediatrics (AAP) and national pediatric oncology associations have advocated for routine clinical poverty screening. Systematic implementation of this recommendation in pediatric oncology is not yet standard, and feasibility data are needed. We report the feasibility of routine poverty screening in a pediatric oncology referral center and baseline poverty characteristics of this population. METHODS: From 2013 to 2017, 448 families with newly diagnosed pediatric cancer at Dana-Farber/Boston Children's Cancer and Blood Disorders Center were offered the Psychosocial Assessment Tool 2.0 (PAT) as part of routine care. The PAT includes a two-item screen for household material hardship (HMH). All families were asked about annual household income by a resource specialist. Data were abstracted with sociodemographic and child/disease characteristics. Descriptive statistics are reported. RESULTS: Four hundred and thirteen families completed the PAT (response rate 92%), of whom 394 (95%) completed specific questions assessing for HMH. Ninety-four percent of families who met with a resource specialist disclosed their annual household income. One quarter (27%) of families was ≤200% federal poverty level at diagnosis, and 44% of families endorsed at least one domain of HMH. The most frequent domains of HMH included housing (24%), utilities (20%), and transportation (20%). CONCLUSIONS: Systematic poverty screening per AAP and pediatric oncology psychosocial standards of care is feasible in routine cancer care. There is a high baseline incidence (44%) of HMH in at least one domain in families with newly diagnosed pediatric cancer who may benefit from early identification and resource intervention.

Development of a Psychosocial Risk Screener for Siblings of Children With Cancer: Incorporating the Perspectives of Parents.

Objective: Although many siblings experience distress after a child's cancer diagnosis, their psychosocial functioning is seldom assessed in clinical oncology settings. One barrier to systematic sibling screening is the lack of a validated, sibling-specific screening instrument. Thus, this study developed sibling-specific screening modules in English and Spanish for the Psychosocial Assessment Tool (PAT), a well-validated screener of family psychosocial risk. Methods: A purposive sample of English- and Spanish-speaking parents of children with cancer (N = 29) completed cognitive interviews to provide in-depth feedback on the development of the new PAT sibling modules. Interviews were transcribed verbatim, cleaned, and analyzed using applied thematic analysis. Items were updated iteratively according to participants' feedback. Data collection continued until saturation was reached (i.e., all items were clear and valid). Results: Two sibling modules were developed to assess siblings' psychosocial risk at diagnosis (preexisting risk factors) and several months thereafter (reactions to cancer). Most prior PAT items were retained; however, parents recommended changes to improve screening format (separately assessing each sibling within the family and expanding response options to include "sometimes"), developmental sensitivity (developing or revising items for ages 0-2, 3-4, 5-9, and 10+ years), and content (adding items related to sibling-specific social support, global assessments of sibling risk, emotional/behavioral reactions to cancer, and social ecological factors such as family and school). Conclusions: Psychosocial screening requires sibling-specific screening items that correspond to preexisting risk (at diagnosis) and reactions to cancer (several months after diagnosis). Validated, sibling-specific screeners will facilitate identification of siblings with elevated psychosocial risk.

The perceived influence of childhood cancer on the parents' relationship.

OBJECTIVE: When a child is diagnosed with cancer, parents are faced with many practical and emotional challenges that can significantly affect their relationship. This study explores how having a child with cancer affects the quality of the parents' relationship, categorizes time points and events during the child's treatment when the relationship becomes most stressed and/or strengthened, identifies factors that help couples remain emotionally engaged throughout their child's cancer treatment, and assesses parental interest in a counseling intervention. METHODS: This is a cross-sectional, multicenter study conducted via a semistructured self-administered questionnaire that included the Revised Dyadic Adjustment Scale. RESULTS: One hundred ninety-two parents of children diagnosed between the ages of 1 and 21 participated. Forty percent felt their relationship moved in a negative direction. Diagnosis and relapse of disease were cited as the most individually stressful time points in the disease trajectory, with hospitalizations and relapse being most stressful on the relationship. Participants felt most emotionally connected at diagnosis and least emotionally connected at the start and end of treatment. The majority of couples indicated interest in counseling to address ways to support their relationship. Soon after diagnosis and during treatment was reported as the preferred time to offer these interventions. CONCLUSION: This study identified specific events and parent behaviors that strain the couples' relationship during the childhood cancer trajectory. This information can inform the development of a couple's intervention. Prospective research is needed to better understand how childhood cancer affects caregivers' partnerships through survivorship and beyond.

Risk factors and treatment for steroid-related mood and behavior symptoms in preschool children with leukemia: A case series.

Treatment of pediatric acute lymphoblastic leukemia (ALL) relies on systemic corticosteroids for remission; however, they can cause significant mood and behavior changes that interfere with quality of life and may increase risk for injury. This case series reports on preschool children with preexisting developmental and psychiatric risk factors who presented with behavioral side effects that required intervention. Identification of these vulnerable children may provide opportunities for early intervention, anticipatory guidance, and effective treatment to minimize behavioral side effects and improve quality of life and safety during ALL treatment.

Measuring Medication Adherence in Pediatric Cancer: An Approach to Validation.

Objective: This study described the prospective relationship between pharmacological and behavioral measures of 6-mercaptopurine (6MP) medication adherence in a multisite cohort of pediatric patients diagnosed with cancer ( N = 139). Methods: Pharmacological measures (i.e., metabolite concentrations) assessed 6MP intake. Behavioral measures (e.g., electronic monitoring) described adherence patterns over time. Results: Three metabolite profiles were identified across 15 months: one group demonstrated low levels of both metabolites (40.8%) consistent with nonadherence and/or suboptimal therapy; two other groups demonstrated metabolite clusters indicative of adequate adherence (59.2%). Those patients whose metabolite profile demonstrated low levels of both metabolites had consistently lower behavioral adherence rates. Conclusions: To our knowledge, this was the first study to prospectively validate a pharmacological measure of medication adherence with a behavioral adherence measure in a relatively large sample of pediatric patients with cancer. Using multiple methods of adherence measurement could inform clinical care and target patients in need of intervention.

Preparing youth with cancer for amputation: A systematic review.

Children and adolescents who require limb amputation as part of cancer treatment face many physical and emotional challenges. Preparatory interventions may serve to facilitate positive coping and improve long-term adjustment during pediatric cancer treatment, including decreasing anxiety and postoperative distress. This review aimed to examine and identify the type and degree of psychosocial preparation provided to the child with cancer and family prior to amputation. Electronic databases including Embase, PubMed, and PsycINFO were searched for relevant research articles. Five studies were identified that satisfied inclusion criteria and revealed common themes for preparatory interventions, but results were limited by a lack of empirical approaches and revealed little consensus on pre-operative support prior to amputation. These findings demonstrate that there is a lack of studies to date that have adequately addressed psychosocial preparation prior to amputation for pediatric oncology patients. Future research on preparatory interventions is needed using prospective and quantitative research to establish evidence-based recommendations for interventions to support this vulnerable population.

Psychometric properties of the Parenting Concerns Questionnaire in cancer survivors with minor and young adult children.

OBJECTIVE: Although cancer patients with minor children have become more of a focus of psycho-oncological research, little is known about specific parenting concerns. Instruments to assess the concerns and worries of parents with cancer are rare. The Parenting Concerns Questionnaire (PCQ) addresses this issue. We analyzed parenting concerns in cancer survivors and evaluated the German version of the PCQ. METHODS: A total of 1416 cancer survivors with minor and young adult children (≤21 years) were recruited in a register-based study. Descriptive analyses as well as reliability and validity analyses were conducted. We performed a confirmatory factorial analysis of the factor structure proposed by the authors of the original version on the PCQ. RESULTS: Seventy-three percent of the cancer survivors were women, average age was 47.5 years (SD 5.9). Mean time since diagnosis was 44 months (SD 23.4). Between 18 and 31% of survivors reported that they were concerned about their children. The PCQ proved to be a reliable and valid instrument showing medium correlations with standardized measures in expected directions and discriminating between survivors with and without use of psychosocial support services. The factor structure was supported by the confirmatory factorial analysis. CONCLUSIONS: Assessing parenting concerns gives an additional insight into the situation of parents with cancer. In our sample of cancer survivors, we identified one out of three survivors being concerned regarding the impact of their illness on their children. The PCQ can be considered as a valid and reliable instrument with regard to identifying concerned parents with cancer. Copyright © 2015 John Wiley & Sons, Ltd.

Parenting concerns, quality of life, and psychological distress in patients with advanced cancer.

OBJECTIVE: Parents with life-limiting illness anticipate the loss of their parental role and the long-term consequences of their illness on their children. The purpose of this study was to examine relationships between parenting concerns, quality of life (QOL), and symptoms of depression and anxiety in parents with advanced cancer who have dependent children. METHODS: Sixty-three parents diagnosed with a Stage IV solid malignancy completed the Hospital Anxiety Depression Scale (HADS), Parenting Concerns Questionnaire (PCQ), and Functional Assessment of Cancer Therapy-General (FACT-G). The Medical Outcomes Study Social Support Survey (social support) and Eastern Cooperative Oncology Group (ECOG) performance status were assessed as potential covariates. We performed descriptive statistics and multivariable linear regression models for depression, anxiety, and QOL measures. RESULTS: Mean PCQ score was 2.3 (SD 0.9), reflecting mild to moderate parenting concerns. Average depression and anxiety scores were 6.0 (SD 4.2) and 8.2 (SD 3.9), respectively. PCQ scores were associated with depressive symptoms (r = 0.46, p < 0.001), anxiety symptoms (r = 0.52, p < 0.0001), and QOL scores (r = -0.60, p < 0.001). The relationship of PCQ scores to anxiety symptoms (B = 1.5 p = 0.016) and QOL (B = -5.7, p = 0.02) remained significant after controlling for ECOG status, social support, and treatment status. CONCLUSIONS: Parenting concerns are associated with anxiety and depressive symptoms and worse QOL in parents diagnosed with advanced cancer. Further studies that evaluate how parental status affects coping and psychological distress in advanced cancer are needed.Copyright © 2015 John Wiley & Sons, Ltd.

A social program for adolescent and young adult survivors of pediatric brain tumors: The power of a shared medical experience.

Survivors of pediatric brain tumors experience several medical and psychosocial late effects including deficits in social competence. This mixed methods study investigated the experience of 19 adolescent and young adult survivors of pediatric brain tumors and 17 parents who participated in a social support program. Qualitative results demonstrated a significant social isolation that was compounded by medical late effects. Survivors perceived social support and acceptance from interactions with peers who have similar medical backgrounds as a key aspect of the group experience. Parents reported increased social confidence among survivors, although they did not report that social gains generalized beyond the group setting. Interventions to promote the transfer of specific social skills are needed.

Parenting changes in adults with cancer.

BACKGROUND: Children whose parents have cancer are at risk for psychosocial difficulties; however, the mechanisms are not well understood. This cross-sectional study sought support for a model connecting parental cancer to child distress through its impact on parenting self-efficacy beliefs and parenting behaviors by examining relations among parental illness, quality of life/parent functioning, parenting efficacy beliefs, and concerns about children's emotional distress. METHODS: One hundred ninety-four adult oncology outpatients with children who were 18 years old or younger completed questionnaires assessing their health-related quality of life (Functional Assessment of Cancer Therapy-General), depression and anxiety symptoms (Hospital Anxiety and Depression Scale), overall distress (Distress Thermometer), and parenting efficacy beliefs and parenting concerns (Parenting Concerns Questionnaire). RESULTS: Parenting efficacy scores for parents and coparents declined significantly after diagnosis. This decline correlated with more visits to a medical clinic, treatment with intravenous chemotherapy in the past month, poorer health-related quality of life, and more depression and distress. Parents experiencing the most concern about the impact of mood, physical limitations, and changes in routines on their children experienced the biggest declines in their own sense of efficacy as parents and in their belief in their coparent's efficacy. Finally, declines in parenting efficacy beliefs correlated with parental concerns about children's emotional distress about aspects of the parent's illness. CONCLUSIONS: This study highlights the importance of identifying and addressing parenting concerns to alleviate patient distress, and it may help to guide future intervention efforts.