Family burden and parental distress following mild traumatic brain injury in children and its relationship to post-concussive symptoms

OBJECTIVE: To examine the relationship of mild traumatic brain injuries (TBI) and post-concussive symptoms (PCS) to post injury family burden and parental distress, using data from a prospective, longitudinal study. METHODS: Participants included 71 children with mild TBI with loss of consciousness (LOC), 110 with mild TBI without LOC, and 97 controls with orthopedic injuries not involving the head (OI), and their parents. Shortly after injury, parents and children completed a PCS interview and questionnaire, and parents rated premorbid family functioning. Parents also rated family burden and parental distress shortly after injury and at 3 months post injury. RESULTS: Mild TBI with LOC was associated with greater family burden at 3 months than OI, independent of socioeconomic status and premorbid family functioning. Higher PCS shortly after injury was related to higher ratings of family burden and distress at 3 months. CONCLUSIONS: Mild TBI are associated with family burden and distress more than mild injuries not involving the head, although PCS may influence post injury family burden and distress more than the injury per se. Clinical implications of the current findings are noted in the Discussion section.     

Predictors of PTSD in mothers of children undergoing bone marrow transplantation: the role of cognitive and social processes

OBJECTIVE: To investigate the role of cognitive and social processing in posttraumatic stress symptoms and disorder (PTSD) among mothers of children undergoing bone marrow and hematopoietic stem-cell transplantation (BMT/SCT). METHOD: Questionnaires assessing emotional distress, BMT-related fears, and negative responses of family and friends were completed by 90 mothers at the time of the BMT infusion and 3 and 6 months post-BMT. PTSD symptoms were measured 6 months post-BMT by both paper-and-pencil and structured interview methods. RESULTS: Emotional distress, BMT-related fears, and negative responses of family and friends assessed at the time of BMT hospitalization were predictive of later PTSD symptoms. None of these variables prospectively predicted a PTSD diagnosis as measured by the structured interview. CONCLUSIONS: Higher levels of general psychological distress, cognitive interpretations of the threat of the BMT for the child's future functioning, and negative responses of family and friends may place mothers at risk for post-BMT posttraumatic stress symptomatology.     

Acute stress disorder among parents of infants in the neonatal intensive care nursery

The authors examined the prevalence of acute stress disorder (ASD) in parents of infants hospitalized in the neonatal intensive care unit (NICU). Forty parents were assessed after the birth of their infants. Parents completed self-report measures of ASD, parental stress, family environment, and coping style: 28% of parents developed symptoms of ASD. ASD was associated with female gender, alteration in parental role, family cohesiveness, and emotional restraint. Family environment and parental coping style are significantly associated with the development of trauma symptoms. Results from this study suggest potential interventions to help minimize psychological distress in parents.     

Predicting children's response to an invasive medical investigation: the Influence of effortful control and parent behavior

OBJECTIVE: To investigate the relative contributions of effortful control (reflecting the child's ability to shift and refocus attention) and parental coping- and distress-promoting behaviors to children's coping and distress during the voiding cystourethrogram (VCUG, X-ray of the kidneys). METHOD: Thirty-two children between ages 2 and 7 years were videotaped undergoing the VCUG. Parent and child behaviors were coded according to the CAMPIS-R (Blount et al., 1997), and parents completed a temperament inventory assessing effortful control across a range of everyday situations. RESULTS: Children manifested relatively high rates of distress and low rates of coping. Their coping attempts were not associated with reduced rates of distress. The most frequent child coping behavior was distraction. Both effortful control and parent coping-promoting behavior (particularly talk about topics other than the VCUG) made independent contributions to child coping behavior. Parent distress-promoting behavior (particularly reassurance) made a strong contribution to child distress behavior. CONCLUSIONS: Factors relating to the child (effortful control) and parent (coping and distress-promoting behaviors) both contribute to children's response to an aversive medical procedure. Interventions that facilitate parent coping and promoting behavior, reduce their distress-promoting behavior, and compensate for children's infrequent and ineffective use of coping strategies (such as distraction) may be optimal for young children, particularly those low in effortful control.     

A child-focused intervention for coping with procedural pain: are parent and nurse coaches necessary?

OBJECTIVE: To examine the efficacy of training children to cope with immunization pain without the assistance of trained coaches and determine whether untrained parents or nurses are more effective at decreasing children's distress. METHODS: We compared the procedural coping and distress behavior of 31 3- to 7-year-old children trained in coping skills to 30 who did not receive training. The behavior of the untrained parents and nurses was evaluated as it related to child coping and distress. RESULTS: Children demonstrated understanding of the training, but they did not use the coping skills during the procedure. In general, the nurses' behavior was associated with child coping and parents' behavior with child distress. CONCLUSIONS: More extensive child training or the involvement of coaches for procedural distress might be necessary. Nurses' behavior appears to center on encouraging child coping, and parents tend to comfort child distress.     

Brief report: Predictors of parenting stress among parents of children with biochemical genetic disorders

OBJECTIVE: To examine predictors of parenting stress in parents whose children were diagnosed with a biochemical genetic disorder clinically or through newborn screening. METHODS: Parents of 263 children with biochemical genetic disorders (139 identified by newborn screening, 124 identified clinically) completed interviews focused on child health, medical service use, satisfaction with services, parenting stress, and family functioning. RESULTS: Multiple regression analyses suggested that child adaptive functioning, parental satisfaction with support, and difficulties parents experienced meeting their child's health care needs were associated with scores on the Parenting Stress Index (R2 =.51). CONCLUSIONS: Initiatives to improve child adaptive functioning and parental support as well as practical assistance to help parents meet their child's health needs may reduce parental stress and family disruption in this population.     

Parental communication of BRCA1/2 genetic test results to children

The aim of this study was to evaluate the likelihood, correlates, and psychological impact of parental communication to children of parents' BRCA1/2 genetic test results for breast cancer risk. Subjects were 133 adult members of high risk families. Sociodemographic, clinical, and psychological distress variables were assessed during a baseline telephone interview conducted prior to patient education and test result notification. Parental communication of test results to children and parental psychological distress and coping efforts were assessed 1 month post-genetic counseling and receipt of test results. Mothers (versus fathers), and persons with higher levels of baseline general distress, were significantly more likely to communicate their test results to children. Post-counseling coping efforts, both active and avoidant, were positively associated with post-counseling distress levels. However, communication of test results to children did not relate to changes in distress. In conclusion, parents with higher levels of pre-counseling general psychological distress may be more likely to communicate their genetic test results to children; however, this act does not minimize their distress and could possibly generate distress in their youngsters. Research is needed to evaluate the process and content of post-test disclosure episodes and the impact on participant, child, and family functioning.     

Psychosocial adjustment in children with kidney disease

Objective: To examine family environment, levels of parentingstress, and child behavior problems in children with one ofthree kidney diseases compared to healthy children and to examinepredictors of psychological distress in the full sample. Method: Parents of children with steroid sensitive nephroticsyndrome, chronic renal insufficiency, or kidney transplant (n = 41) were compared to 34 healthy children of similar demographic characteristics. Results: Mean scores on family functioning, parenting stress,and child behavior were within normal limits. Family environment variables significantly predicted child behavior and parentingstress for parents of ill and healthy children. Qualitativeresponses provided insight into developmentally specific stressorsand intervention needs in the illness groups. Conclusions: These data indicate that long-term survivors ofkidney disease function similarly to demographically matchedpeers and that the family environment may buffer stress causedby illness. Specific concerns raised by parents in the kidneydisease groups indicate the need to appropriately assess andintervene with this understudied population.     

Development of a preliminary questionnaire to assess parental response to children's food allergies.

BACKGROUND: Food allergy affects up to 8% of children. Unintentional exposure may result in minor to potentially fatal episodes. Management of allergies depends on strict allergen avoidance and emergency preparedness. The demands of allergy management and concerns for the child's safety may place parents at risk of developing emotional distress or difficulties in coping. OBJECTIVE: To develop a brief condition-specific measure to evaluate parental adjustment to and coping with children's food allergy. METHODS: A total of 221 parents of children 18 year or younger with food allergy were recruited from a private allergy practice and local food allergy support groups. Parents completed an 18-item questionnaire, the Food Allergy Parent Questionnaire (FAPQ), that assessed parental coping with a child's food allergy and questions related to their child's food allergy diagnosis and course. RESULTS: Factor analysis of the items on the FAPQ suggested 4 factors that accounted for 53.6% of the variance: parental anxiety/distress, psychosocial impact of allergies, parental coping/competence, and family support. Medical variables (greater number of food allergies, positive history of anaphylaxis) were associated with higher scores on the anxiety/distress and psychosocial impact subscales. Internal consistency was good for the anxiety/distress and psychosocial impact subscales (Cronbach alpha = .80 and .77, respectively) but lower for the parental coping/competence and family support subscales (alpha = .57 and .32, respectively). CONCLUSIONS: Although further psychometric data for the FAPQ is needed, preliminary findings suggest that the measure may be useful in screening for parental anxiety, perceived impact of food allergies, level of family support, and coping skills.     

Race as a moderator of parent and family outcomes following pediatric traumatic brain injury

OBJECTIVE: To use data from a prospective, longitudinal study to determine whether race moderates parent and family outcomes during the first year following pediatric traumatic brain injuries (TBI). METHOD: Participants included 73 white and 18 black children with moderate to severe TBI and their families, and 32 white and 23 black children with orthopedic injuries only (OI) and their families. Assessments of parent and family functioning occurred shortly after injury (baseline) and at 6- and 12-month follow-ups. RESULTS: Race was a significant moderator of group differences in parental psychological distress and perceived family burden, by and large independent of socioeconomic status. The negative consequences of TBI were relatively less pronounced for parents of black children than for parents of white children at baseline, but became more pronounced at the two follow-ups. Black and white parents differed in preferred coping strategies, which may partially account for their different reactions to their children's injuries. CONCLUSIONS: The sociocultural factors associated with race may moderate the effects of pediatric TBI and OI on parents and families.     

Psychological adjustment in caregivers of school-age children infected with HIV: stress, coping, and family factors

OBJECTIVE: To assess for significant differences in psychological functioning between caregivers of HIV-infected children and caregivers of healthy children, and to examine the utility of applying a stress and coping model to caregivers of children with HIV disease. METHODS: Participants included caregivers of HIV-infected children (n = 36) and caregivers of a demographically matched control group of healthy children (n = 32). During their child's pediatric clinic visits, caregivers completed measures of psychological adjustment, stress, coping style, and family resources and support. They also completed a measure of their child's psychological adjustment. RESULTS: Caregiver psychological distress scores did not significantly differ between the HIV and control groups, and clinically significant rates of psychological distress were reported by more than a third of caregivers in both groups. Hierarchical multiple regression analyses revealed that independent of their child's illness status, stress and coping style were significant predictors of caregiver's psychological adjustment. In addition, caregiver psychological distress was a significant predictor of children's maladjustment. CONCLUSIONS: High rates of psychological distress were observed in caregivers of children with HIV disease; however, similarly high rates of psychological adjustment problems were found in caregivers of healthy children. Caregivers who reported high levels of daily stress and emotion-focused coping styles tended to report more psychological distress. Further, caregivers who reported more psychological distress also reported more internalizing and more externalizing behavior problems in their children, regardless of the child's illness status. These findings reflect the impact of poverty and environmental stress on caregivers' adjustment.     

Changes in maternal distress and child-rearing strategies across treatment for pediatric cancer

OBJECTIVES: To examine longitudinal changes in perceived stress, affective distress, and self-reported parenting strategies among mothers of children with cancer over the initial 6 months of diagnosis and treatment, and to examine relationships between changes in distress and subsequent parenting strategies. METHOD: Questionnaire data were gathered regarding parental perceived stress, caregiver burden, affective distress, and parenting strategies from 65 mothers of children (mean age = 8.3 years) with cancer at 2-5, 12-14, and 22-24 weeks postdiagnosis. RESULTS: Consistent with other studies in the literature, maternal affective distress decreased over the time course of the study. Perceived stress also decreased, while caregiver burden remained relatively stable. Parental consistency fluctuated over the study period, while other parenting strategies (i.e., control, nurturance, and responsiveness) remained stable. CONCLUSIONS: Although maternal affective distress decreased following the initial diagnosis of cancer, sources of stress (e.g., caregiver burden) may remain stable, indicating the need for interventions to bolster parental coping resources.     

Putting the pieces together: preliminary efficacy of a web-based family intervention for children with traumatic brain injury

OBJECTIVE: To report preliminary efficacy data from a Web-based family problem-solving intervention to improve parent and child adaptation. METHOD: Eight parents and six children with moderate to severe traumatic brain injury (TBI) who were injured more than 15 months earlier (M = 16 months) participated in the intervention. Families were given computers, Web cameras, and high-speed Internet access. Weekly videoconferences with the therapist were conducted after they completed self-guided Web exercises on problem-solving, communication, and antecedent behavior management strategies. RESULTS: Paired t tests comparing pre- and post-intervention scores revealed significant improvements in injury-related burden, parental psychiatric symptoms, depression, and parenting stress. There were also significant reductions in antisocial behaviors in the injured child, but not in self-reported depressive symptoms. CONCLUSIONS: These findings suggest that a computer-based intervention may successfully be used to improve both parent and child outcomes following TBI in children.     

Parental reinforcement of recurrent pain: the moderating impact of child depression and anxiety on functional disability

OBJECTIVE: To examine whether children's distress moderates the relationship between parental responses to children's pain behaviors and functional disability. METHODS: Participants were 215 children (ages 8 to 16 years) diagnosed with either headaches, juvenile idiopathic arthritis, or sickle cell disease. Children and parents completed questionnaires assessing sociodemographics, pain, depression, anxiety, parental solicitous responses to pain behaviors, and functional disability. RESULTS: Hierarchical linear regressions computed for parental responses to children's pain significantly predicted child functional disability, controlling for children's pain intensity. Significant interactions between parental solicitous behaviors and child depressive symptoms (beta =.74, p <.01) and between solicitous behaviors and child anxiety symptoms (beta =.91, p <.01) indicated that for children with more psychological distress, parental solicitous behaviors were associated with greater child functional disability. CONCLUSIONS: Child psychological distress may exacerbate the impact of parental solicitous responses to pain on functioning, suggesting the potential role of family intervention to enhance optimal functioning in children with recurrent pain.     

The role of parent stress and coping and family functioning in parent and child adjustment to Duchenne muscular dystrophy.

This study found 57% of parents of 35 children with Duchenne Muscular Dystrophy (4 to 14 years of age) to have self-reported poor psychological adjustment. The hypothesized mediational variables of parent appraisal of stress, relative use of palliative coping methods, and level of family conflict accounted for 58% of the variance in general distress, 50% in depressive symptoms, and 31% in anxiety symptoms. In terms of parent-reported child adjustment, 89% of the children were classified by parent report as having a behavior problem pattern. The internalizing profile pattern was most frequent (37%). The parent mediational variables accounted for 26% of the variance in parent-reported internalizing behavior problems and 29% in externalizing behavior problems.     

Parent and family factors associated with child adjustment to pediatric cancer

OBJECTIVE: To identify factors that influence the association between parent and child distress among families of children with cancer and comparison peers. METHODS: Parent and child distress, social support, and family environment were assessed among families of 95 children with cancer (94 mothers, 67 fathers) and 98 comparison peers (97 mothers, 77 fathers). RESULTS: Significant associations were found between parent and child distress. For models examining the impact of fathers' distress on children, several moderators were identified (i.e., family environment, child age and gender, a cancer diagnosis, and treatment severity). Family environment also partially mediated father and child distress. CONCLUSIONS: Children whose parents were distressed were more likely to be distressed themselves. Subgroups of children were particularly vulnerable, indicating a need to identify further mechanisms of risk and resilience and to develop family-based interventions. Support was found for including fathers as independent sources of information in pediatric psychology research and clinical practice.     

Longitudinal changes in family outcomes of very low birth weight

OBJECTIVES: Although children with very low birth weight (VLBW, <1500 g) are at high risk for developmental impairments, we know little about the long-term effects of VLBW on families. This study examined long-term family outcomes and their stability over time. METHODS: Participants were the families of 64 children with <750 g birth weight, 54 with 750-1499 g birth weight, and 66 term-born controls. Family burden and parental distress were assessed annually as part of longitudinal follow-up of the children from mean ages 11-14 years. RESULTS: Family burden and parental distress were higher in the <750 g group than in the term-born group, but differences varied with the child's age and family environment. CONCLUSIONS: The findings document long-term effects of VLBW on families that are moderated by the degree of low birth weight, child's age, and family environment.     

Functioning among mothers and fathers of children with juvenile rheumatic disease: a longitudinal study.

Examined the adaptation of mothers and fathers of children with juvenile rheumatic disease on two occasions, 1 year apart, using 159 married couples at Time 1, and 111 of these couples at Time 2. A stress and coping model was tested in which parental functioning is determined by ongoing life stressors (patient and spouse dysfunction), family resources, and parents' illness-related coping. Mothers reported more depression than fathers did. However, poorer concurrent functioning among both mothers and fathers was explained partly by patients having more functional disability, pain, and psychosocial problems. In addition, spouse's dysfunction and the parent's use of avoidance coping were related to poorer parental adaptation, both concurrently and 1 year later. The implications of the findings for developing stress and coping models of parental adaptation to having a chronically ill child, and for intervention strategies with parents, patients, and families, are discussed.     

Psychosocial and Family Functioning in Children with Insulin-Dependent Diabetes at Diagnosis and One Year Later

Examined the initial impact and subsequent adjustment to thediagnosis of insulin-dependent diabetes mellitus (IDDM). Childrenbetween 1 and 14 years of age and their families were assessedseveral weeks after diagnosis and again a year later using standardizedmeasures of child behavior, parental mental health, and familyfunctioning. Immediately after diagnosis, the children and bothparents exhibited mild symptoms of psychological distress butthese had largely resolved at 12-month follow-up. The impactof IDDM diagnosis on family functioning varied with informant,SES, and the age of the child, with an overall tendency forfamilies to become less flexible over the year. Findings suggestthat most children and their parents exhibit satisfactory individualadjustment after a period of initial stress but family functioningis affected in complex ways. Serial follow-up of the cohortis planned to establish whether the current findings are predictiveof longer term outcome.     

Evaluation of a group intervention for children with food allergy and their parents

BACKGROUND: Children with food allergy and their parents may experience substantial stress related to the risk of serious reactions and the demands of allergy management. OBJECTIVE: To evaluate a group intervention for children with food allergy and their parents designed to increase parent-perceived competence in coping with food allergy and to decrease the parent-perceived burden associated with food allergy. METHODS: Sixty-one children aged 5 to 7 years with food allergy and their parents attended 1 of 4 half-day workshops, with parent and child groups run concurrently. Parents completed self-report measures of perceived competence in coping with food allergy at 3 time points: preworkshop (within 8 weeks of the intervention), postworkshop (immediately after the intervention), and follow-up (4-8 weeks after the intervention). Parents completed a measure of burden associated with food allergy at preworkshop and follow-up. Parents and children also completed evaluations of the study intervention. RESULTS: Parent-perceived competence in coping with food allergy increased significantly from preworkshop to postworkshop and follow-up, and parent-perceived burden associated with food allergy decreased from preworkshop to follow-up. Parent and child evaluations of the workshop were favorable. CONCLUSIONs: These findings provide preliminary support for the effectiveness and feasibility of a group intervention for children with food allergy and their parents and suggest the importance of controlled evaluations of group interventions in this population in the future.