When a parent dies: A scoping review of protective and risk processes for childhood bereavement.

The death of a parent can have profound effects on child development. Yet, little is known about the individual and environmental processes that contribute to heterogeneity in child bereavement outcomes. A scoping review was conducted in samples of parentally bereaved children to identify key processes, synthesize results, and determine research gaps. This scoping review identified 23 studies (mainly from the United States), published between 1990 and 2023, that reported child (ages 3-22 years) individual and/or environmental protective and/or risk processes that contributed to bereavement outcomes. Individual processes (i.e., how children manage stressors and think about themselves/their environment) included child coping and perception of themselves and/or their environment. Environmental processes (i.e., contextual resources) included family, mentorship, and stress exposure. Findings can be used to apprise clinicians, families, and policymakers of the unique nature of childhood bereavement and to identify malleable processes to target in interventions designed to prevent problematic outcomes in bereaved children.

"I don't have a choice but to keep getting up and doing the things that protect her": The informal caregiver's adaptation to the cancer diagnosis.

PURPOSE: Patients with hematologic malignancies (HM) typically rely on informal caregivers for support. Caregivers experience distress, poorer health, and lower quality of life. This study aimed to understand caregivers' experiences adapting to, and making meaning of, their family members' cancer diagnosis and treatment. APPROACH: Qualitative, constructivist approach. PARTICIPANTS: Caregivers (N = 28) of patients with HM within three months of diagnosis. METHODS: A descriptive content analysis was used to analyze semi-structured interview responses and generate themes. FINDINGS: Six themes emerged: power and control (powerlessness, empowerment, relinquishing control/accepting help), protection (gatekeeping, protective buffering), integrating the diagnosis, tolerating uncertainty, preparedness for the caregiver role, and maintaining positivity. CONCLUSIONS: Findings highlight challenges and resilience-promoting processes for caregivers adapting to HM diagnosis and treatment. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Psychological and supportive care interventions can promote acceptance of the diagnosis, preparation for caregiving, navigation of power and control, and targeted coping strategies.

Sleep-related challenges and family functioning in children and adolescents previously treated for craniopharyngioma.

PURPOSE: We investigated sleep-related challenges and their association with family functioning in children and adolescents previously treated for craniopharyngioma. DESIGN: Quantitative approach using psychometrically validated measures. SAMPLE: Thirty-nine children and adolescents who had been treated for craniopharyngioma and their primary caregivers. METHODS: Caregivers and youth completed measures of family functioning, family routines, daytime sleepiness, and children's sleep patterns. FINDINGS: Children and adolescents with craniopharyngioma had significantly higher ratings of self-reported excessive daytime sleepiness, bedtime fears/worries, and restless legs symptoms compared to their relatively healthy peers. Lack of family routines and poor family functioning were related to poor sleep-related outcomes and increased excessive daytime sleepiness. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Providers should consider assessing sleep difficulties in pediatric brain tumor survivors from a family systems perspective. Intervening on family-related factors may help improve sleep and other health-related outcomes, whereas intervening on sleep may help improve family functioning.

The feasibility and acceptability of mobile ecological momentary assessment to evaluate sleep, family functioning, and affect in patients with pediatric craniopharyngioma.

PURPOSE/OBJECTIVES: We aimed to assess the feasibility and acceptability of mobile ecological momentary assessment (mEMA) for youth with craniopharyngioma and evaluate daily associations among family functioning, affect, and sleep difficulties. DESIGN/RESEARCH APPROACH: Youth completed two mEMA diaries per day for one week. SAMPLE/PARTICIPANTS: Thirty-nine youth who underwent surgery and proton radiotherapy (when indicated) for craniopharyngioma. METHODS/METHODOLOGICAL APPROACH: Descriptive statistics and multi-level modeling were used to examine feasibility and acceptability of mEMA and daily associations among family functioning, affect, and sleep. FINDINGS: Youth reported satisfaction and minimal burden from completing daily mEMA diaries. Poorer family functioning was not related to lower sleep efficiency. CONCLUSIONS/INTERPRETATION: mEMA is an acceptable and feasible method for evaluating sleep and related variables in children and adolescents with craniopharyngioma. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS OR POLICY: Results highlight the utility of gathering mEMA data in youth at elevated risk for sleep difficulties as a function of their illness/treatment.

Using the Three-Minute Speech Sample to Examine the Parent-Adolescent Relationship in Autistic Youth: A Qualitative Analysis.

PURPOSE: This qualitative study examines autistic adolescents' perception of the quality of their relationship with their parent using the Three Minute Speech Sample. METHODS: Twenty autistic youth (13-17 years; 83% male) spoke, uninterrupted, for three minutes about their thoughts and feelings regarding their mothers. Audio-recorded speech samples were transcribed and coded for emergent themes. RESULTS: Adolescents highlighted emotional support and acceptance in the context of their relationship, support mothers provide for mental health, love and caring, efforts to build the relationship through shared activities, and areas of adolescent-parent conflict. CONCLUSION: The TMSS is a low cost, low burden method by which autistic adolescents can comfortably and effectively self-report the quality of their relationship with their parent/caregiver.

Caregiver Expressed Emotion and Pediatric Asthma: A Call for Culturally Specific Adaptations.

Background: Expressed emotion is the affective attitudes and behaviors of an individual toward another. In this preliminary study, we described expressed emotion among caregivers of children with asthma living in low-income urban area and evaluated its association with child asthma control. Methods: Forty-one children (90.2% African American/Black) and their caregivers participated. Measures included the Childhood Asthma Control Test and the Five-Minute Speech Sample coded for overall expressed emotion, emotional over-involvement, and criticism. Results: Most caregivers were rated borderline (31.7%) or high (48.8%) for expressed emotion, borderline (31.7%) or high (39.0%) for emotional overinvolvement, and low for criticism (73.2%). The association between criticism and asthma control neared statistical significance [U(Nlow = 30, NB/high = 11) = 100, z = -1.922, P = 0.055]. Conclusion: Findings suggest an examination into expressed emotion coding procedures for caregivers in low-income urban areas, and culturally specific adaptations may be necessary. Future research should confirm findings in a larger sample and consider how parental criticism affects children's asthma management.

Impact of a Hematologic Malignancy Diagnosis and Treatment on Patients and Their Family Caregivers.

OBJECTIVES: Hematologic malignancies (HMs) are life-threatening cancers that frequently entail aggressive, long, inpatient treatment protocols. This can result in numerous concurrent symptoms and decreased quality of life for patients and can affect family caregivers (FCs). This study examined the impact of an HM diagnosis on patients and on their FCs. SAMPLE & SETTING: A descriptive design was used to explore the experiences of 28 newly diagnosed patients and their FCs. All patients were receiving treatment on an inpatient acute oncology unit at a National Cancer Institute-designated cancer center. METHODS & VARIABLES: Semistructured, separate interviews with patients and FCs were recorded and transcribed verbatim. Textual and content analyses were conducted to generate common themes. RESULTS: Patients and FCs reported how diagnosis and treatment affected them physically, emotionally, logistically, and financially. They described the effects of their experiences with the health system and providers in areas such as diagnostic process, trust in the medical team, support needs, and hospitalization. IMPLICATIONS FOR NURSING: Understanding the parallel experiences of patients with HMs and their designated FCs allows researchers to develop targeted interventions and enables clinicians to provide personalized patient- and family-centered care.

How Caregivers Cope and Adapt When a Family Member Is Diagnosed With a Hematologic Malignancy: Informing Supportive Care Needs.

BACKGROUND: Informal family caregivers (FCs) of adults with various diseases including hematologic malignancy (HM) experience low quality of life and psychological well-being. Although HMs are life-threatening cancers associated with high mortality, numerous symptoms, and lengthy hospitalizations and are therefore likely to be challenging for FCs to cope with, there is scant research exploring FC experiences. OBJECTIVE: The aim of this study was to describe the coping and adaptation of FCs of patients during diagnosis and treatment of HM. METHODS: This study used a qualitative descriptive design to analyze semi-structured interview responses from FCs (N = 28) within 3 months of the patients' HM diagnosis. A content analysis was conducted to generate common themes. RESULTS: Family caregivers endorsed adaptive and maladaptive coping. Adaptive strategies included taking one day at a time, spirituality, engaging in pastimes, and utilizing emotional and instrumental family and community support. Maladaptive coping included wishful thinking, harmful habits, avoidance, and lacking or being unable to accept family and community support. CONCLUSIONS: Findings highlight the complexities of caregiver burden as they support their loved ones with HM. IMPLICATIONS FOR PRACTICE: Family caregivers would benefit from receiving an interdisciplinary family-centered approach as their HM person is initiating treatment. Nurses should consider assessing the FCs' psychosocial needs to help facilitate appropriate services, such as palliative care consultations, social work referrals, support groups, and/or counseling.

African American Children's Racial Discrimination Experiences and Mental Health.

The current study examined how African American children's experiences of perceived personal racial discrimination and perceived vicarious racial discrimination were linked with depressive and anxiety symptoms, and whether there were significant sex differences in these relations. The sample included 73 African American children (48% male), ranging from 7 to 12 years of age (M = 8.82, SD = 2.06). Models specified children's personal discrimination and vicarious discrimination as predictors of depressive and anxiety symptoms. Nested model comparisons were also used to examine whether associations varied as a function of children's sex. The current study hypothesized that both forms of discrimination would be associated with greater anxiety and depressive symptoms. Findings indicated that children's personal racial discrimination significantly predicted greater child anxiety symptoms for both boys and girls. No significant sex differences emerged. Neither personal nor vicarious discrimination significantly predicted depressive symptoms. Our findings highlight that racialized experiences occur early in childhood and have important implications for children's mental health.

Ethical considerations in pediatric chronic illness: The relationship between psychological factors, treatment adherence, and health outcomes.

Children, adolescents, and young adults with chronic illnesses are often faced with complicated and burdensome treatments that not only require a great deal of time and energy to manage, but will also likely impact relationships with parents, siblings, and peers. Adolescents and young adults with chronic illness are often impacted by several unique and challenging factors that can ultimately impact health behaviors and treatment outcomes. Working with a psychologist can help to ameliorate these unique challenges, which will positively impact health behaviors and health outcomes. The present paper provides an overview of psychological interventions that were designed to target the unique challenges that are often associated with maladaptive health behaviors and ultimately poor health outcomes. As demonstrated in this commentary, when working with adolescents and young adults who have unique developmental challenges, it is important to deliver multi-faceted intervention approaches that utilize a number of different strategies and frameworks. These eclectic intervention approaches provide a unique opportunity to improve health behaviors during critical developmental periods, including the transition from childhood to adolescence to young adulthood.

The Association Between Adverse Childhood Experiences and Child Telomere Length: Examining Self-Regulation as a Behavioral Mediator.

Childhood adversity is linked to shortened telomere length (TL), but behavioral indicators of telomere attrition remain unclear. This study examined the association between adverse childhood experiences (ACEs) and child TL, and if ACEs were indirectly associated with TL through children's self-regulatory abilities (i.e., effortful control and self-control). Hypotheses were tested using national data from teachers, parents, and their children (N = 2,527; Mage  = 9.35, SD = .36 years). More ACEs were uniquely associated with short TL, and low self-control mediated the association between more ACEs and short TL. While longitudinal studies are needed to strengthen claims of causation, this study identifies a pathway from ACEs to TL that should be explored further.

COVID-19-Related Misinformation among Parents of Patients with Pediatric Cancer.

We conducted a survey among 735 parents to determine differences in endorsement of misinformation related to the coronavirus disease pandemic between parents of children in cancer treatment and those with children who had no cancer history. Parents of children with cancer were more likely to believe misinformation than parents of children without cancer.

Children's appraisals of threat in pediatric cancer☆.

PURPOSE: Although many children with cancer cope well with challenges, some experience distress that results in poor adjustment. Children's perceptions of threat may be one explanation for heterogeneity in outcomes, but relatively little is known about what children find threatening. This study aimed to describe the threats that children report. METHOD: Youth (4-18 years old) newly diagnosed with cancer and their primary/parent caregivers (PC) participated in a multi-method study. Appraisals of threat were assessed via self-report and a narrative technique at two weeks post-diagnosis. PCs reported children's anxiety and depressive symptoms three months post-diagnosis and children reported their quality of life (QOL) six months post-diagnosis. RESULTS: Youth reported various types of threatening events (e.g., receiving the cancer diagnosis, fear or pain of procedures) across multiple domains (e.g., threat to self, physical threat, threat of loss). Adolescents tended to report threat to life (e.g., the seriousness of the diagnosis itself) whereas younger children reported other threats (e.g., procedural pain). Children with high perceived threat to self had higher subsequent anxiety symptoms and lower QOL compared to those with low appraisals of threat to self. There was also a significant mean difference between high and low appraisals of threat of loss in child reported QOL. CONCLUSIONS: Youths' reported threats, as well as how threat appraisals related to adjustment outcomes in distinct ways, underscores the developmental nature of how youth interpret medically stressful events and the utility of developmentally sensitive assessment. Understanding perceived threat could ultimately inform efforts to foster positive long-term adaptation for youth with cancer.

Brief Report: Gender Differences in Experiences of Peer Victimization Among Adolescents with Autism Spectrum Disorder.

Peer victimization (PV) is a common problem for many adolescents with autism spectrum disorder (ASD) and can negatively impact the mental health and well-being of these youth. Results of the current study of 105 adolescents with ASD (n = 50 girls, 55 boys) indicated that girls and boys experience similar types of PV at similar frequencies. However, relational victimization accounted for a significant portion of variance in anxiety symptoms, above and beyond social communication deficits and restricted and repetitive behaviors, in girls but not in boys. Findings provide preliminary evidence suggesting that the impact of PV on mental health symptoms may be different for girls and boys with ASD, highlighting the need for more research focused on understanding potentially unique social processes for adolescent girls with ASD.

The impact of cumulative stress on asthma outcomes among urban adolescents.

INTRODUCTION: Many families living in low-income, urban areas experience a number of stressors (e.g., poverty, neighborhood stress, family functioning) that place adolescents at risk for worse asthma outcomes. Adolescents may face additional challenges (e.g., peer pressure, school stress) that add to their overall stress and influence their disease care and health outcomes. The current study examined the impact of a cumulative risk model of stressors including poverty, neighborhood stress, school stress, peer pressure, and caregiver-adolescent conflict on asthma outcomes (e.g., emergency department [ED] visits, asthma control, quality of life [QOL]) among urban adolescents (13-17 years). METHODS: Data were collected from 61 urban families of adolescents with asthma (54.1% female; 93.4% African American) in the United States. Caregivers and adolescents completed questionnaires assessing stressors and asthma outcomes separately during a research session. RESULTS: Cumulative risk was significantly associated with worse adolescent QOL and asthma control, and more ED visits. The cumulative risk index was also a more robust predictor of QOL and asthma control than any one individual predictor. Poverty, neighborhood stress, and school stress emerged as individual predictors of ED visits. Further, adolescents with well-controlled asthma had significantly lower neighborhood and school-related stress scores. CONCLUSIONS: Findings suggest that beyond the risk conferred by individual risk factors, an accumulation of stress can have an especially negative impact on asthma outcomes for urban adolescents. Future intervention work aimed at improving asthma outcomes should consider incorporating strategies for minimizing overlapping sources of stress in adolescents' daily lives.

Interactive effects of family functioning and sleep experiences on daily lung functioning in pediatric asthma: An ecological momentary assessment approach.

Objectives: Children living in urban, underserved settings are at risk for experiencing sleep difficulties as well as poor asthma outcomes. The family is important for both asthma management and ensuring children are getting the necessary amount of sleep, but how family functioning and sleep patterns influence children's asthma remains unclear. Methods: Fifty-nine children (7-12 years old; 90% African American) diagnosed with asthma, and their primary caregivers, participated in this study. In a single research session, caregivers rated overall family functioning via the Family Assessment Device. Caregivers also completed daily diaries delivered via smartphone for a two-week period rating their children's daily sleep quantity and quality; a home-based spirometer (AM2) was used to assess children's pulmonary functioning across that same period. Two-level multilevel models tested associations among overall family functioning, children's sleep quality/quantity, and pulmonary functioning. Results: Child sleep quality, quantity, and general family functioning did not predict child pulmonary functioning directly. Family functioning and sleep quality interacted to predict children's pulmonary functioning; children with poor family functioning and bad/very bad sleep quality had the poorest levels of lung functioning. Conclusions: These findings highlight a subset of children who are at higher risk for poor lung functioning based on sleep quality and family functioning. Results may inform routine monitoring of family functioning and sleep difficulties at pediatric asthma visits and intervention strategies to augment children's lung functioning.

Parents' child-related schemas: Associations with children's asthma and mental health.

The parent-child relationship, a key dyad of the family, can influence disease-related and psychological processes in children with asthma. Although the critical role of parenting behaviors in asthma outcomes is well established, less is known about the attitudes and beliefs underlying parents' interactions with their children and how those attitudes may relate to asthma outcomes. Thus, this study aimed to identify profiles of parents' schemas pertaining to their children with asthma and examine whether child mental and physical health outcomes differed by profile membership. Caregivers of children (n = 177; 5-12 years old) with asthma completed the Five Minute Speech Sample (Magaña et al., 1986), which was later coded for positive and negative attitudes and attributions about their children. Using a pattern-based approach, cluster analyses revealed three profiles of schemas: high negativity-low positivity, low negativity-low positivity, and low negativity-high positivity. Profiles differed in levels of externalizing and internalizing child symptoms, and lung function. Results support the growing body of research placing emphasis on the role of parenting in pediatric asthma outcomes. Caregiver schemas may constitute a point of intervention in families of children with asthma. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Familial support following childhood sexual abuse is associated with longer telomere length in adult females.

Robust associations between adverse childhood experiences and shortened telomere length exist, but few studies have examined factors that may moderate this association, particularly with a resilience framework. The present study examined the association between exposure to childhood sexual abuse (and abuse severity) and mean telomere length, and whether social support and optimism moderated this association. The sample included 99 White monozygotic female twins, ranging in age from 35 to 70 (Mage = 52.74, SD = 8.55 years), who provided a blood sample for telomere assay, and data on their childhood sexual abuse history, trait optimism, and current social support. Linear mixed effects models were employed to test study hypotheses. There were no effects of exposure to abuse or abuse severity on mean telomere length, nor were there main or moderating effects of optimism, in analyses of the full sample. However, in analyses that only included women exposed to abuse, there was an abuse type × support interaction: among women who experienced abuse in forms other than intercourse, higher levels of social support were associated with longer mean telomere length. Findings from the current study clarify the role of childhood sexual abuse in telomere attrition, and identify one factor that may protect against the negative biological effects of childhood sexual abuse.

Discrepancies between parent and self-reports of adolescent psychosocial symptoms: Associations with family conflict and asthma outcomes.

Discrepancies often exist between self-reported and parent-reported symptoms when assessing youth psychosocial functioning. Parent-child discrepancies in ratings may be important for understanding psychopathology and patterns of family functioning, particularly during adolescence and for youth with chronic illness. This study examined patterns of multirater reporting discrepancies in a pediatric asthma population. Adolescents (n = 707; 11-17 years old) and their primary caregivers completed ratings of adolescents' psychological symptoms. Latent profile analysis identified five profiles of parent-adolescent discrepancies, including one group with highly discordant ratings, two groups in agreement, and two groups with slightly discordant ratings. Adolescents who agreed with their parents on the presence of elevated symptoms and those who had significant discrepancies in ratings, such that parents reported elevated symptoms compared to youth self-report, had poor pulmonary functioning and elevated reports of parent-rated family conflict. Results suggest the need to assess internalizing and externalizing symptoms in adolescents with asthma using a multirater approach while also highlighting the complexity in interpreting patterns of discrepancies. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Primary and Secondary Caregiver Reports of Quality of Life in Pediatric Asthma: Are They Comparable?

PURPOSE: This study aimed to compare primary and secondary caregiver QOL within families of children with asthma and determine the potential importance of including secondary caregiver QOL in clinical and research settings. METHODS: Participants included 118 families of children with asthma that had primary and secondary caregivers. Families completed measures in a single research session. Caregivers reported on QOL, psychological functioning, and family burden; children completed a measure of QOL. Child lung function was determined from objective spirometry. Adherence to prescribed controller medication was measured for 6 weeks following the research visit. RESULTS: Primary caregiver QOL was significantly lower than secondary caregiver QOL (Mean overall QOL of 5.85 versus 6.17, p < .05). Better medication adherence was associated with higher primary caregiver QOL (ρ = .22, p = .02); secondary caregiver QOL, not primary caregiver QOL, was positively associated with child QOL (ρ = .20, p = .03). Families with discrepant QOL scores between caregivers (difference in scores of at least .50) were characterized by more family burden and primary caregiver psychological symptoms. CONCLUSIONS: Differences in QOL scores between caregivers may be a reflection of primary caregivers' greater investment in daily asthma management. In families reporting low burden and few psychological difficulties in the primary caregiver, QOL assessments from either caregiver may may be informative and representative of how parents are adapting to child asthma. In families experiencing high levels of burden or more primary caregiver psychological difficulties, QOL reports from secondary caregivers may not be as clinically meaningful.