Long-term family outcomes for children with very low birth weights

OBJECTIVE: To examine long-term outcomes in families of children with very low birth weights (<1500 g) in relation to the extent of low birth weight and neonatal medical risk. DESIGN: Concurrent/cohort prospective study. SETTING: Regional follow-up program. PARTICIPANTS: Families of 60 children of school age with birth weights less than 750 g, 55 with birth weights between 750 and 1499 g, and 49 normal birth weight full-term controls. MAIN OUTCOME MEASURES: Parent ratings of psychological distress, family function, and child-related stress. RESULTS: Families with children with birth weights less than 750 g experienced greater stress than did families of controls (born at full term), and families who were sociodemographically advantaged experienced greater stress than did those who were disadvantaged. Higher neonatal medical risk also predicted a more negative impact on the family, but only in advantaged families. Regression analyses suggested that adverse family outcomes were mediated by ongoing problems in child functioning. CONCLUSIONS: Families of children with birth weights less than 750 g experience more long-term adversity than families of full-term children. Family sequelae are also present for children with very low birth weight at high neonatal medical risk. Ongoing child health and behavior problems may be the major source of these sequelae, and sociodemographic status is an important consideration in identifying family adversity. Although many families appear unaffected, results support the need to monitor family outcomes and develop interventions for both the child and family.     

Experience with long-term care of dialyzed children and children with kidney transplants

By the increasing number of children with terminal renal failure the experience in the care of these patients has grown. In this paper the treatment of 197 children with chronic renal insufficiency observed from 1969 to 1980 at the University Children's Hospital in Heidelberg is summarized. A concept of integrated care adjusted to the stage of the disease was adopted. Emphasis is given to obtain a smooth transition from one therapeutic stage (conservative treatment, hospital dialysis, home dialysis, transplantation) to another. The clinical course of the patients including death is presented. The main medical and psychosocial problems arising at the end-stage of renal failure are discussed: the indications for continuing therapy, the choice of vascular access for dialysis and the form of dialysis treatment. The advantages of home dialysis as well as its stress on child and parents are underlined. The main role of dialysis is to prepare the child for transplantation and to replace renal function in the meantime. In spite of the obvious advantages of transplantation in allowing an improved quality of life, the somatic and psychologic stress involved should be kept in mind. We conclude that during all therapeutic stages passed by children with chronic renal failure a preventive approach should be favoured from the clinical as well as from the psychological point of view.     

Psychosocial aspects of the treatment of phenylketonuria

The psychosocial aspects of phenylketonuria (PKU) were investigated retrospectively in the families of 25 children and adolescents with classical PKU. With the help of a semistructurated questionnaire the parents were asked in interviews what impact the birth, the diagnosis of PKU in their child and the treatment itself had on them. 19 of the children had been detected by newborn screening and given early treatment. With one exception they all showed adequate intellectual development. Six other children were diagnosed late and only three of them had been given dietary treatment with some degree of success. Many of the parents reacted with shock and disbelief after being informed that their child was abnormal. In many ways the parents expressed retrospectively the wish that they had been better informed about their childs disease and had more intensive support from the medical professionals. They believed that with these prerequisites they would have been more competent in the case of their children. The data demonstrate the necessity of psychological care for the entire family of the chronically sick child.     

Childhood cancer: a 4-year prospective study of the psychological adjustment of children and parents

PURPOSE: The objective of this 4-year prospective study was to assess the psychological adjustment of children treated for cancer and their parents. PATIENTS AND METHODS: Children aged 2 to 12 years with cancer diagnosed and their parents and families (n = 39) were assessed immediately after their diagnosis and then annually for the next 4 years. At each assessment, the psychological adjustment of the children and their families was compared with the adjustment of a cohort of children and families in the general community (n = 49). RESULTS: Immediately after the diagnosis of cancer in the children, the children and their parents had significantly more psychological problems than children and parents in the community. However, at subsequent assessments, there was no difference in the number of psychological problems experienced by children and parents in the two groups. CONCLUSIONS: In the longer term, the prevalence of psychological problems experienced by children treated for cancer and their parents does not differ from that found in children and parents in the general community. Future research should give greater attention to other aspects of the lives of children treated for cancer and their parents, including their broader health-related quality of life.     

Factors associated with parenting stress in mothers of children with fragile X syndrome

Whereas previous research has demonstrated elevated levels of parenting stress in parents of children with general developmental disability, there has been little investigation of stress in parents of children specifically affected by the common neurogenetic disorder fragile X syndrome (FraX). This study elucidates stress profiles in mothers of children with FraX and delineates the contribution of child characteristics, home environment, and maternal psychological functioning to specific dimensions of parental stress. Data on child, home, and family characteristics were collected from 75 families with a child affected by FraX. These characteristics were entered into multiple regression analyses with a domain or subscale of the Parenting Stress Index as the dependent variable in each analysis. The results demonstrated that aspects of child behavior, family cohesion, household income, and maternal psychopathology differentially correlate with specific dimensions of parenting stress. Determining the relative contribution of factors associated with stress will assist in the development of interventions to improve parental well-being in mothers of children with FraX.     

Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries

The joint role of parent stress and social support in the emotional adjustment of children was examined prospectively in a group of children with d-transposition of the great arteries (d-TGA). Questionnaires on parent perceptions of stress and social support were administered when children were 1 and 4 years of age (n = 143-153). Parent ratings of child behavior problems were collected at 4 years (n = 152). The findings indicate a favorable outcome for parents and children with congenital heart disease (CHD). Compared with normative samples, parents experienced less stress and more social support, and they rated children as showing fewer behavior problems. Parents with more stress at both ages reported more behavior problems. Families with less social support reported more stress at both 1 and 4 years. Social support, however, did not moderate the relationship between stress and child behavior problems. Early detection of distressed families may assist in alleviating stress and reducing behavior problems.     

Psychological reaction by children of various ages to hospital care and invasive procedures

Hospital care and treatment by invasive procedures produce significant psychological effects on children. Urogenital surgery deserves particular study. The developmental aspects of different ages are highly relevant. A proposed multidimensional model of contributing factors includes type of medical treatment, any previous surgery, the child's temperament, coping strategies of both child and parents and their psychological health, support from parents and staff, information and psychological preparation and age of the child. Up to now, there have been no clear recommendations as to the best age for elective surgical procedures in children according to psychological risk. In general, older children adapt better psychologically after hospital care. The literature, however, tends to advise elective surgery before 12 mo of age, based on apparent psychological adjustment in the very young after surgery and from a desire to shorten the period of living with the malformation/disorder. However, increased follow-up surgery from early interventions gives a higher risk of psychological problems. More well-controlled studies are needed before final evaluation of the impact of surgical interventions on psycho-social symptoms according to age group. In this analysis a multidimensional model is preferred.     

Psychological reaction by children of various ages to hospital care and invasive procedures

Hospital care and treatment by invasive procedures produce significant psychological effects on children. Urogenital surgery deserves particular study. The developmental aspects of different ages are highly relevant. A proposed multidimensional model of contributing factors includes type of medical treatment, any previous surgery, the child's temperament, coping strategies of both child and parents and their psychological health, support from parents and staff, information and psychological preparation and age of the child. Up to now, there have been no clear recommendations as to the best age for elective surgical procedures in children according to psychological risk. In general, older children adapt better psychologically after hospital care. The literature, however, tends to advise elective surgery before 12 mo of age, based on apparent psychological adjustment in the very young after surgery and from a desire to shorten the period of living with the malformation/disorder. However, increased follow-up surgery from early interventions gives a higher risk of psychological problems. More well-controlled studies are needed before final evaluation of the impact of surgical interventions on psycho-social symptoms according to age group. In this analysis a multidimensional model is preferred.     

Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: a prospective cohort study.

OBJECTIVE: We aimed at evaluating surgery-related posttraumatic stress disorder (PTSD) in parents of children undergoing cardiopulmonary bypass surgery. Risk factors for parental PTSD symptoms were explored. DESIGN: A prospective cohort study was performed assessing PTSD symptoms immediately after discharge and 6 months after cardiopulmonary bypass surgery. SETTING: Recruitment took place at a tertiary pediatric medical center in Switzerland. SUBJECTS: German-speaking parents of children with congenital heart defects aged between 0 and 16 yrs undergoing cardiopulmonary bypass surgery were eligible (n = 228). After child discharge, 135 mothers and 98 fathers of 139 children (response rate 61.0%) participated. Six months after surgery, 121 mothers and 92 fathers of 128 children (response rate, 56.1%) took part in the study. INTERVENTIONS: Assessment via a screening instrument and self-rating scale, and extraction of data from charts. MEASUREMENTS AND MAIN RESULTS: The Posttraumatic Diagnostic Scale was applied to estimate self-reported symptoms of PTSD. Following discharge, 16.4% of mothers and 13.3% of fathers met diagnostic criteria for acute PTSD. Another 15.7% of mothers and 13.3% of fathers experienced significant symptoms of posttraumatic stress. Six months after surgery, PTSD rates were 14.9% and 9.5%, respectively. Mothers experienced more severe symptoms of PTSD, but gender differences were not detected with regard to the frequency of PTSD at either time. After controlling for socioeconomic status and child preoperative morbidity, PTSD symptom severity after discharge remained the only significant predictor of PTSD severity at 6 months. Pre-, peri-, and postoperative factors did not predict parental PTSD. CONCLUSIONS: Parents of children undergoing cardiopulmonary bypass surgery are at increased risk for intermediate and long-term psychological malfunctioning. Acute symptoms of PTSD in parents shortly after discharge of their child are a major risk factor for the development of chronic PTSD. Clinicians need to identify parents at risk at an early stage to provide them with systematic support.     

Parenting children with anorectal malformations: implications and experiences

Parents play a crucial role in the life of a child suffering from an anorectal malformation (ARM), since their guidance contributes to the degree to which the child learns to cope with his or her disability. We investigated whether they experience stress in parenting such a child and also attempted to identify somatic or behavioral characteristics in the child that influence the stress of parenting. The parents of 109 children (69 males, 40 females; median age 5.9 years, range 1–18 years) with an ARM (58 low, 10 intermediate, 41 high) were studied. The Nijmegen Questionnaire on Child-rearing Situations (NQCS) was used to investigate the existing parenting situation. Behavioral characteristics of the children were studied by means of the Child Behaviour Checklist (CBCL) and the Teacher Report Form (TRF). In a semi-structured interview, we investigated how parents experienced the implications of the disability in everyday life with their child. Our study showed that as far as the perception of parenting stress is concerned, parents of children with an ARM do not differ from those with healthy primary-school children. Within the group of parents with ARM-afflicted children, the parents of older, incontinent children experienced relatively more stress, especially when the child concerned was male. With regard to the children's behavior, the parents and teachers under investigation did not report a higher than normal incidence of deviant behavior. However, when individual parents observed difficult behavior in their child, they found it harder to deal with than the incontinence for feces. Regarding the implications of the disorder for their everyday lives, parents were concerned and indicated a need for specific counselling. We conclude that having a child with a somatic affliction, in this case an ARM, does not automatically imply that the parents experience child-rearing problems. However, certain groups of parents are more at risk, i.e., parents with older, incontinent sons and parents with children exhibiting behavioral problems. In addition, our study shows that parents do have difficulties in coping with the implications of the disorder and express a need for support. We feel that patient care can be improved if aid is tailored to these specific problems. Accepted: 12 September 1997     

Difficulties in psychological adjustment to a new neonatal screening programme

Previous studies have shown the impact of psychological stress in neonatal screening where the test result turns out to be false-positive. The families in these studies received standardized medical and psychological support in connection with the clinical examination of their newborns. It was thus of interest to study the effect of making the same neonatal screening procedures--i.e., for congenital hypothyroidism--a part of the routine. Eleven families, who had been routinely examined at one of the five pediatric clinics in Stockholm were investigated. In the present study the same method as in previous studies was used, but the interviews were done 1-4 years after the screening. The psychological experiences of the parents were assessed with the aid of hypothetical models based on psychoanalytical theory. Only two families had a satisfactory outcome and nine families had experienced the clinical procedures as chaotic. The mother-child relationship and the child's development were clinically evaluated. In six families the relationship was affected but only one child appeared to be disturbed. In conclusion, the development of routines for screening newborns is very important and the psychological needs of parents must be considered, even when the test result is false positive.     

Pediatric medical traumatic stress in pediatric oncology: family systems interventions

PURPOSE OF REVIEW: Traumatic stress offers a helpful framework by which the ongoing reactions of children with cancer and their families can be understood. Family systems interventions in pediatric oncology are reviewed, with a focus on reducing pediatric medical traumatic stress (PMTS) across members of the family. RECENT FINDINGS: A recently developed model of PMTS is presented and applied to the pediatric cancer population. Two family interventions to decrease traumatic stress systems are reviewed. Reductions in traumatic stress symptoms were observed at postintervention follow-ups for family members in both studies. SUMMARY: The pediatric medical traumatic stress model provides a useful heuristic for understanding the psychological consequences of pediatric cancer on the child and their family over the course of treatment and beyond. Two family systems interventions show promise in improving outcomes for childhood cancer survivors and their parents. Although interventions are promising, future development of these interventions to modify them for dissemination is needed.     

Acute traumatic stress symptoms in child occupants and their parent drivers after crash involvement

BACKGROUND: Approximately 1 in 4 children hospitalized with injuries from traffic crashes and their parents experience symptoms of acute stress disorder (ASD). These families represent a minority of those exposed to the trauma of a crash. To date, no studies have explored the prevalence of ASD symptoms in the broader population of children and parents exposed to crashes. OBJECTIVE: To describe the prevalence of and risk factors for ASD symptoms in children and their driver parents after vehicle crashes. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional study via telephone survey of parent drivers and children (aged 5-15 years), using an exposure-based crash surveillance system. A probability sample of 1091 crashes involving 1483 children weighted to represent 24 376 children in 18 422 crashes was collected. MAIN OUTCOME MEASURE(S): Parent-reported ASD symptoms and impairment. RESULTS: Significant ASD symptoms occurred in 1.6% (95% confidence interval, 0.9%-2.3%) of children in crashes and 4.7% (95% confidence interval, 4.0%-5.5%) of parents. In children, ASD symptoms were independently associated with sustaining an injury and with receiving medical care; in parents, symptoms were independently associated with child injury, child receiving medical care, Hispanic ethnicity, lower income (< USD 40 000), and higher crash severity. CONCLUSIONS: Sustaining injuries and receiving medical treatment were strong predictors for developing ASD symptoms after crashes but ASD symptoms often occurred in the absence of these risk factors. Health care professionals should consider screening for traumatic stress symptoms in children and their parents when children are involved in traffic crashes, particularly if they sustain injuries.     

Surrogacy families: parental functioning, parent-child relationships and children's psychological development at age 2

BACKGROUND: Findings are presented of the second phase of a longitudinal study of families created through surrogacy. METHODS: At the time of the child's 2nd birthday, 37 surrogacy families were compared with 48 egg donation families and 68 natural conception families on standardised interview and questionnaire measures of the psychological well-being of the parents, parent-child relationships and the psychological functioning of the child. RESULTS: The surrogacy mothers showed more positive parent-child relationships, and the surrogacy fathers reported lower levels of parenting stress, than their natural conception counterparts. The surrogacy children did not differ from the natural conception children with respect to socio-emotional or cognitive development. CONCLUSIONS: Surrogacy does not appear to impact negatively on parenting or child development in families with 2-year-old children.     

Family recovery after death of a child.

Children from a national birth cohort living in families in which a sibling had died or been stillborn were compared with children living in similarly structured families where no such tragedy had occurred by a number of health, developmental, and behavioural outcomes. Surprisingly little ill effect from a sibling death (occurring either before or after the birth of study children) was apparent at the age of 5 years. Families experiencing a stillbirth or death of a child were socially disadvantaged. Even allowing for this and other likely intervening factors, however, a child whose adjacent sibling had died was significantly more liable to bronchitis or wheezing during the first 5 years. Mothers who had experienced the death of a child since the study child''s birth had high scores on a psychological screening test, and were more likely to be single parents. Mothers who had lost a child were more likely to smoke during the next pregnancy. No significant differences between cases and control subjects were detected on other health, behavioural, or developmental outcomes. Stillbirth or death of a child appears to have little measurable effect on siblings assessed at 5 years of age. This study does not exclude important longer term psychological effects from sibling death.     

Difficulties in Psychological Adjustment to a New Neonatal Screening Programme

ABSTRACT. Previous studies have shown the impact of psychological stress in neonatal screening where the test result turns out to be false-positive. The families in these studies received standardized medical and psychological support in connection with the clinical examination of their newborns. It was thus of interest to study the effect of making the same neonatal screening procedures—i.e., for congenital hypothyroidism—a part of the routine. Eleven families, who had been routinely examined at one of the five pediatric clinics in Stockholm were investigated. In the present study the same method as in previous studies was used, but the interviews were done 1–4 years after the screening. The psychological experiences of the parents were assessed with the aid of hypothetical models based on psychoanalytical theory. Only two families had a satisfactory outcome and nine families had experienced the clinical procedures as chaotic. The mother-child relationship and the child's development were clinically evaluated. In six families the relationship was affected but only one child appeared to be disturbed. In conclusion, the development of routines for screening newborns is very important and the psychological needs of parents must be considered, even when the test result is false positive.     

Parent responses to participation in genetic screening for diabetes risk

Screening for type 1 diabetes (T1DM) risk in newborns has little negative emotional impact on mothers. In this study, the impact on the mother and the father was evaluated both in the general population and in families with diabetes. All parents with a newborn in Skane, Sweden, were invited to a screening for T1DM risk in their children (the Diabetes Prediction in Skane (DiPiS)). Blood was obtained at delivery from the mother and the child. When the child was 2 months old, parents gave written consent and filled out questionnaires, but were not informed about the genetic risk. Of the 10 538 invited families, 6831 (64.8%) consented and 806 (7.7%) declined participation. Five questions addressing both parents were filled out by 6676 (63.4%) mothers and 6099 (57.8%) fathers. In 146/6676 (2.2%) families, one family member had diabetes (D-families). Participation in DiPiS did not affect most parents and the majority was satisfied with the information. The majority of parents (28.9%) were reassured and only 1.1% (140/12,670) reported increased worries because of participation, compared to 2.8% of the mothers in D-families. Parents in D-families more often ascribed diabetes risk to their child as well as the risk being higher. Mothers and fathers differed in their answers on four of the five study questions, with mothers being more satisfied with the information, reporting more knowledge of diabetes, estimating lower risk of their child to get diabetes, but reporting more worries of possible future chronic disease in the child. Parents with lower education, being born abroad, or being younger who reported worries of chronic disease in the child were also reassured by participation in the study. These results confirm that screening for T1DM risk in newborns does not create worries in most parents, but stress that fathers differ from mothers in opinions and reactions, that parents' reactions are affected by diabetes in the family, and that demographic factors might be important for the parents' reports.     

Diagnostic practice and its impacts on parental health and child behaviour problems in autism spectrum disorders

Obtaining a diagnosis is a key point in developing a treatment plan for children with autism spectrum disorders (ASD), but little attention has been paid to the impacts of diagnostic practices on families, and the consequent impact on child outcomes. Parents' experiences during ASD diagnosis for their child can be stressful, and such stress can lead to parental ill health, child-behaviour problems, and poorer child outcomes following treatment. Thus, the conduct of diagnosis may be of particular importance for subsequent child outcomes and parental health. A lack of knowledge regarding best diagnostic practice may ultimately impair treatment efficacy and lead to increased health- and economic-burdens. Given this, the current article examines recent work concerning: parental experiences of ASD diagnoses; general health and psychological functioning of parents of newly-diagnosed children with ASD; aspects of the diagnostic process impacting on parental functioning; and the relationship of parental functioning to child outcomes. These are placed into the context of diagnostic best practice for ASD, and understanding the complex relationship between ASD and family variables.     

Hematopoietic stem cell transplantation in children with sickle cell anemia: The parents’ experience

Genoidentical HSCT is currently the only curative treatment for SCA, preventing further vascular complications in high‐risk children. Studies on the psychological implications of HSCT for recipient, sibling donor, and the rest of the family have been limited in SCA. This study enrolled ten families and used semi‐structured interviews to explore the parents' experience at three time points: first before transplantation, then 3 months later, and 1 year later. Three themes emerged from the results: (a) the presence of anxiety, experienced throughout the process, and alleviated by coping strategies (positive thinking, family support, praying); (b) the ability to remain parents to recipient and other family members, despite apprehension and feelings of helplessness, reinforced by the mobilization of important resources at the individual/family levels; (c) the ability to acknowledge the opportunity for their child to be cured of the disease, despite feelings of guilt toward families without a donor, or their own families back home. Overall, the parental experience with HSCT is complex, involving intra‐psychic, familial, cultural, religious, and existential factors. Thus, it is important for medical teams to be cognizant of these issues in order to provide the best support to families during the HSCT process.     

Parental management of infants born following a cot-death victim who were monitored compared to infants who,despite similar histories,were not monitored: A controlled study

We studied 93 families who had previously lost a baby to cot-death. Of these, 31 chose cardiorespiratory monitoring (CRM) for their next child and were compared to 62 families who, despite similar histories, decided not to monitor their subsequent infant. A control group consisted of 50 families without history of cot death. The three objectives of this retrospective study were: (1) to gain insight into psychological factors which differentiate between parents who insist on monitoring their infant and those who do not; (2) to explore how parents of both groups cope with their feelings of anxiety and stress and; (3) to examine the effect of psychological factors on parental reactions to monitor alarms. Infants of the monitor group and the nonmonitor group were matched to the age reached by the previous cot-death victims at the moment of death. Parents who had experienced cot-death (91%) and 37% of the control group parents completed the State-Trait Anxiety Inventory (STAI) and a questionnaire, consisting mainly of multiplechoice questions. Results show that monitor parents and nonmonitor parents differ greatly in their expectations of and attributions to the equipment and in the way they process information about monitoring. More monitor parents attribute a protective value to CRM. Monitor parents reported to have been more stressed during pregnancy. Postnatally, monitor parents and nonmonitor parents did not experience different anxiety levels. Nonmonitor parents experienced a slight decrease of feelings of happiness over time. Mothers with high state anxiety scores noted more false bradycardia alarms than mothers with low scores. In contrast, fathers with high trait and state anxiety scores reported more technical false alarms than fathers with low anxiety scores. These differences between fathers and mothers in reports of alarms demonstrate the subjective character of the observations.