"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.

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.

Emotion Regulation in Families: Exploring the Link between Parent-Child Alexithymia and Child Post-Traumatic Stress Symptoms Amidst the COVID-19 Pandemic.

The COVID-19 pandemic comprises a mass trauma for children and families, and children may face particular vulnerability to post-traumatic stress symptoms (PTSS) through processes of parent and child emotional dysregulation, such as alexithymia. With 88 U.S. children (Mage = 9.94 years; 54.5% female; 59.1% White) and their parents/caregivers (68.2% female; 59.1% White), a path model was tested in which child alexithymia symptoms partially mediated the association between parent alexithymia symptoms and child COVID-19-related posttraumatic stress symptoms (PTSS). We also tested an alternative model in which child alexithymia symptoms moderated the association between parent alexithymia symptoms and child PTSS. The hypothesized mediation model was supported (ß = 0.15, SE = 0.05, 95% CI: [0.07, 0.25], p < 0.001), whereas the hypothesized moderator model was not (ß = 0.06, p = 0.44). Findings highlight the importance of parents' emotional understanding and regulation for child mental health during mass traumas such as pandemics.

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.

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.

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.

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.

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.

Examining Profiles of Family Functioning in Pediatric Asthma: Longitudinal Associations With Child Adjustment and Asthma Severity.

Objective: Identify profiles of functioning in families of children with asthma and examine whether profile membership predicts subsequent child mental and physical well-being. Methods: Primary caregivers and children ( N = 1,030) from the Childhood Asthma Management Program completed questionnaires assessing family functioning and child adaptation at five time points. Asthma severity was also assessed via spirometry. Results: Latent profile analyses identified a four-profile solution as best fitting the data: cohesive, permissive, controlling/disengaged, and controlling/enmeshed families. Distal outcome analyses using Bolck-Croon-Hagenaars techniques suggested that children from families that were more cohesive had fewer internalizing and externalizing symptoms. These associations remained stable across time. Family profiles did not differ with regards to child asthma severity. Conclusion: Results highlight the importance of looking beyond the effects of distinct components of family functioning and instead using pattern-based approaches. Recommendations for incorporating screenings and services for families in pediatric care settings are provided.

Immune and neuroendocrine correlates of temperament in infancy.

There is now a clear focus on incorporating, and integrating, multiple levels of analysis in developmental science. The current study adds to research in this area by including markers of the immune and neuroendocrine systems in a longitudinal study of temperament in infants. Observational and parent-reported ratings of infant temperament, serum markers of the innate immune system, and cortisol reactivity from repeated salivary collections were examined in a sample of 123 infants who were assessed at 6 months and again when they were, on average, 17 months old. Blood from venipuncture was collected for analyses of nine select innate immune cytokines; salivary cortisol collected prior to and 15 min and 30 min following a physical exam including blood draw was used as an index of neuroendocrine functioning. Analyses indicated fairly minimal significant associations between biological markers and temperament at 6 months. However, by 17 months of age, we found reliable and nonoverlapping associations between observed fearful temperament and biological markers of the immune and neuroendocrine systems. The findings provide some of the earliest evidence of robust biological correlates of fear behavior with the immune system, and identify possible immune and neuroendocrine mechanisms for understanding the origins of behavioral development.

Quality of Life in Children With Asthma: A Developmental Perspective.

OBJECTIVE: The current study investigated whether factors associated with quality of life (QOL) in children with asthma (e.g., family functioning, asthma routines, asthma severity) differed by child age. METHODS: Participants included 192 children with asthma (5-12 years) and their caregivers. Both children and caregivers completed questionnaires at an initial research session. Family functioning was determined from a mealtime observation that occurred in family homes. RESULTS: Child age moderated the association between asthma severity and child QOL and between routine burden and QOL in children with asthma. Post hoc probing analyses revealed that among older children, QOL levels were lower in the presence of worse asthma severity and more routine burden. CONCLUSIONS: Findings suggest that associations between asthma severity, routine burden, and QOL may differ by child age. Treatment programs and health-care recommendations addressing QOL in children with asthma may need to be tailored to address differences in factors associated with QOL by child age.

An Exploratory Study of Resilience to Stressful Life Events in Autistic Children.

Background: Autistic children experience more stressful life events (SLEs) than their neurotypical peers, which are related to poor mental health outcomes in both neurotypical and autistic individuals. However, there is a lack of longitudinal research assessing the perceived impact of stressful life events on autistic children's mental health. Method: Utilizing a novel statistical technique (Ratcliff et al., 2019), called 'area of resilience to stress events' or ARSE in R, we aimed to quantify aspects of resilience, growth, and non-resilience for 67 autistic children (6-13 years old) enrolled in a larger longitudinal study who experienced a SLE. Parents reported demographic information (e.g., child age, biological sex, household income) as well as the child's internalizing and externalizing symptoms and autism characteristics across multiple time points spaced one year apart (baseline, T2, T3, T4). Results: There was substantial variability in the resilience process within the sample. Older children exhibited a less adaptive resilience process (i.e., higher total scaled scores or arsets). Perceived stress of the disruptive event was not correlated with resilience; however, there was a significant child age x stress severity interaction, suggesting that younger children in households that perceived the disruptive event as highly stressful exhibited more efficient resilience, or lower arsets scores, compared to other children. Conclusions: This study introduces an innovative methodological approach to understanding the effects of stressful life events on the mental health of autistic children. Results have implications for family-based policy and practice and highlight for whom services may be most beneficial.

Prenatal maternal anxiety predicts reduced adaptive immunity in infants.

Prenatal anxiety has been linked with altered immune function in offspring in animal studies, but the relevance for human health is unknown. We examined prenatal maternal anxiety as a predictor of adaptive immunity in infants at 2 and 6 months of age as part of a prospective longitudinal study. The humoral immune response to hepatitis B vaccine was assessed at 2 months (n=80) and 6 months (n=76) of age. Prenatal anxiety predicted lower hepatitis B antibody titers at 6 months of age independent of obstetric and socio-demographic covariates; the effects were limited to those infants who had not completed the 3-dose vaccine series (for transformed titer values, r=-.36, p<.05). Cell-mediated immune responses at 2 (n=56) and 6 (n=54) months of age were examined by ELISpot assays for interferon(IFN)-γ, interleukin(IL)-2, and IL-4 responder cell frequencies to three antigens: hepatitis B surface antigen, tetanus toxoid, and phytohaemagglutinin (PHA). Prenatal maternal anxiety was associated with reduced IFN-γ and increased IL-4 responder cell frequencies at 6 months of age, independent of obstetric and socio-demographic covariates. No effect of prenatal anxiety was found on adaptive immunity at 2 months of age. The findings provide the first demonstration in humans that prenatal anxiety alters adaptive immunity in the infant.

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.

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.

Helpful hints: caregiver-generated asthma management strategies and their relation to pediatric asthma symptoms and quality of life.

OBJECTIVE: This mixed-methods study examined the relation between caregiver-generated asthma management strategies and asthma severity in a sample of 200 children with persistent asthma (ages 5-12 years). METHODS: Caregivers were interviewed about asthma management strategies they found helpful in controlling their child's symptoms. A qualitative content analysis was used to identify household strategies. Indicators of asthma severity included lung functioning (FEV(1)) and functional severity (FSS). Child quality of life was also assessed (PQLQ). RESULTS: Six primary household strategies were identified: Reactive, Planning Ahead, Social, Emotional, Avoiding Triggers, and Cleaning. In general, strategies offered by caregivers did not differ by socioeconomic status. Caregivers who endorsed Avoiding Triggers as effective strategies had children with better lung functioning. Caregivers who endorsed Planning Ahead or Emotional strategies had children with better asthma-related quality of life. CONCLUSION: These household strategies hold promise for reducing pediatric asthma symptoms and improving child quality of life.

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.

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.

The ABCs of family mealtimes: observational lessons for promoting healthy outcomes for children with persistent asthma.

Family mealtimes have the potential to promote healthy child development. This observational study of 200 family mealtimes examined the relation between child health in a group of children (ages 5 to 12) with persistent asthma and 3 dimensions of mealtime interaction: Action, Behavior Control, and Communication. Percent time spent in Action and Positive Communication varied by asthma severity, child quality of life, and sociodemographic variables. Positive communication during mealtimes predicted child quality of life. Significant interactions between demographic variables and behavior control suggested that higher levels of behavior control affected child quality of life in the context of lower maternal education. Guidance is offered for practitioners and policy makers toward promoting healthy family mealtimes as a public health priority.