Review of a Parent’s Influence on Pediatric Procedural Distress and Recovery

Understanding how parents influence their child’s medical procedures can inform future work to reduce pediatric procedural distress and improve recovery outcomes. Following a pediatric injury or illness diagnosis, the associated medical procedures can be potentially traumatic events that are often painful and distressing and can lead to the child experiencing long-term physical and psychological problems. Children under 6 years old are particularly at risk of illness or injury, yet their pain-related distress during medical procedures is often difficult to manage because of their young developmental level. Parents can also experience ongoing psychological distress following a child’s injury or illness diagnosis. The parent and parenting behavior is one of many risk factors for increased pediatric procedural distress. The impact of parents on pediatric procedural distress is an important yet not well-understood phenomenon. There is some evidence to indicate parents influence their child through their own psychological distress and through parenting behavior. This paper has three purposes: (1) review current empirical research on parent-related risk factors for distressing pediatric medical procedures, and longer-term recovery outcomes; (2) consider and develop existing theories to present a new model for understanding the parent–child distress relationship during medical procedures; and (3) review and make recommendations regarding current assessment tools and developing parenting behavior interventions for reducing pediatric procedural distress.     

Parents’ Experiences of Receiving the Initial Positive Newborn Screening (NBS) Result for Cystic Fibrosis and Sickle Cell Disease

The clinical advantages of the newborn screening programme (NBS) in the UK are well described in the literature. However, there has been little exploration of the psychosocial impact on the family. This study followed the principles of grounded theory to explore parents’ experiences of receiving the initial positive NBS result for their child with cystic fibrosis (CF) or sickle cell disease (SCD). Semi-structured, qualitative interviews were conducted with 22 parents (12 mothers and 10 fathers) whose children had been diagnosed with CF or SCD via NBS and were under the age of 1 year at the time of interview. The main themes that arose from the data were; parents previous knowledge of the condition and the NBS programme, the method of delivery and parental reactions to the result, sharing the results with others, the impact on parental relationships and support strategies. Study conclusions indicate that most parents thought initial positive NBS results should be delivered by a health professional with condition specific knowledge, preferably with both parents present. Genetic counselling needs to include a focus on the impact of NBS results on parental relationships. Careful consideration needs to be given to strategies to support parents of babies who have positive NBS results both in terms of the psychological health and to assist them in sharing the diagnosis.     

Parenting a Child with Phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the Experience of Parents

Phenylketonuria (PKU) is a rare inherited metabolic disorder which can cause neurological damage if left untreated. PKU is identified through newborn screening in developed countries, and treatment begins immediately to prevent these severe consequences. When a child is diagnosed, parents must assume immediate responsibility for the management of PKU and prevention of neurological damage. Quantitative studies have identified significant psychosocial stressors for parents, but little is known about how the parents experience this process. This study aimed to explore the experiences of parents of children with PKU under the age of two. It is the first study to examine these experiences in this way. Seven parents were interviewed about their experiences, and interpretative phenomenological analysis was used to analyse the data. Three main themes were identified: control, striving for normality and acceptance of PKU as a continuum. Links between the themes and processes underpinning the results were explored with relation to existing literature and theories from a clinical psychology perspective. The role of acceptance of PKU was central to the parent’s experiences. Clinical implications and suggestions for further research are discussed.     

Psychological Distress and Symptoms of Posttraumatic Stress Disorder in Jewish Adolescents Following a Brief Exposure to Concentration Camps

We investigated the psychological impact of an organized visit to Polish concentration camps on Jewish-American adolescents. Eighty-seven adolescents who participated in a B'nai B'rith memorial visit to concentration camps in Poland completed measures of general psychological adjustment and posttraumatic stress disorder (PTSD) at four time-points: pretest, posttest, 6-month follow-up and 12-month follow-up. Measures included the SCL-90-R, the Mississippi Scale for PTSD, and the Impact of Events Scale (IES) for PTSD. On the SCL-90-R, changes in somatization, interpersonal sensitivity, obsessive-compulsive tendencies, depression, anxiety, and phobic anxiety were observed over time, with peak symptom scores at posttest and 6-month follow-up. Scores on the Mississippi Scale for PTSD and the IES Intrusion subscale also increased at 6-months. Predictors of PTSD symptoms on the Mississippi Scale included previous psychiatric treatment and SCL-90-R symptoms of paranoia, depression, and psychosis. Elevated psychotic symptoms on the SCL-90-R predicted PTSD symptoms on the IES. Jewish adolescents with preexisting symptoms of generalized distress or psychoticism appeared at increased risk for PTSD symptoms following exposure to Holocaust stimuli. This study contributes a prospective, multi-measure assessment of trauma reactions in adolescents.     

Stillbirth, neonatal death and Sudden Infant Death (SIDS): parental reactions

The differences between parental grief reactions following different types of infant losses were investigated. A total of 117 parents (55 couples) from three groups of parents (stillbirth, neonatal death and Sudden Infant Death), 53% women and 47% men, answered a survey on different grief reactions one to four years following the death. Included in the survey were psychometric measures relating to anxiety, depression, impact of event, bodily discomfort, and general wellbeing. The results demonstrated that the three groups differed in their experience of various grief reactions. Sudden Infant Death Syndrome (SIDS) parents reported significantly more anxiety and intrusive thoughts than the other two groups in the early post-loss period, as well as significantly more anger, restlessness, and sleep disturbances than the neonatal group. The SIDS parents also scored significantly higher on some of the measures (experience of recovery, IES intrusion) relating to how they felt at the time of study. While the death being sudden did not show any correlation with the parents experience of recovery or the psychometric measures, the length of time the child had lived showed a strong relationship to these measures. It is emphasized that counselling to parents must be based on increased knowledge about parental reactions, tailored to the individual family's needs.     

Analysis of child and parent behavior during painful medical procedures

Examined (a) the impact of demographic, medical, and psychological factors on overall child distress during an invasive medical procedure required for pediatric cancer treatment and (b) the relationship of individual parent behaviors to child distress across phases of the procedure. Seventy 3- to 10-year-old pediatric cancer patients receiving outpatient venipuncture and their parents participated. Overall distress was greater in younger children who had fewer previous venipunctures and poorer venous access and whose parents rated them prior to the procedure as less likely to be cooperative. Providing explanations regarding the procedure was the parent behavior most clearly associated with child distress. The impact of parent explanation depended on when the explanation was given and on the child's level of distress at the time.     

The impact of child problem behaviors of children with ASD on parent mental health: the mediating role of acceptance and empowerment

Raising a child with an autism spectrum disorder (ASD) has often been associated with higher levels of parenting stress and psychological distress, and a number of studies have examined the role of psychological processes as mediators of the impact of child problem behavior on parent mental health. The current study examined the relations among child problem behavior, parent mental health, psychological acceptance, and parent empowerment. Participants included 228 parents of children diagnosed with ASD, 6-21 years of age. As expected, psychological acceptance and empowerment were negatively related to the severity of parent mental health problems. When acceptance and empowerment were compared with each other through a test of multiple mediation, only psychological acceptance emerged as a significant partial mediator of the path between child problem behavior and parent mental health problems. As child problem behavior increased, parent psychological acceptance decreased, resulting in an increase in parent mental health problems. These findings suggest that for problems that are chronic and difficult to address, psychological acceptance may be an important factor in coping for parents of young people with ASD, in line with the growing literature on positive coping as compared with problem-focused coping.     

Multiple Child Food Hypersensitivity Impacts Positive Adjustment in Parents

The physical impacts of food hypersensitivities (e.g. food allergy, food intolerance) encompass wide ranging but individually specific reactions. In contrast, the psychological impact of such illnesses extends beyond the individual who suffers the sensitivity. No Australian studies have examined the psychosocial impact of parenting a child with food hypersensitivities. The aim of this study was to ascertain differences in the psychosocial profile of parents raising a food hypersensitive child. Australian parents were targeted through three national support organisations and answered questions regarding their psychological health. Of a total of 990 respondents, 599 had children. These families comprised 1316 children aged 0–18 (M?=?7.63 years) and more than half (n?=?393) of these families were managing a child with a food hypersensitivity. Parents showed no differences in measured distress. In contrast, positive adjustment was higher for parents of food intolerant children and children with both food allergy and food intolerance, compared to those with non-food hypersensitive children. Moreover parents of children with combined food hypersensitivities reported a greater degree of positive change. The finding that parents of food hypersensitive children were not reporting higher levels of stress than parents without a food hypersensitive child is in stark contradiction to international studies examining both food hypersensitivity and parents of children with a chronic disease more generally. However, it appears that the complexity of the food hypersensitivity had a positive impact on adjustment with parents of children with multiple types of food hypersensitivity reporting greater positive adjustment outcomes.     

Adrenal Insufficiency in Young Children: a Mixed Methods Study of Parents’ Experiences

Research into adrenal insufficiency (AI) and congenital adrenal hyperplasia (CAH) in children has focused largely on clinical consequences for patients; and until recently, the wider experience of the condition from the perspective of other family members has been neglected. In a mixed methods study, we captured the experiences of parents of young children affected by AI/CAH, including their views on the psychosocial impact of living with and managing the condition. Semi-structured interviews were carried out in the UK and an online survey was developed, translated and disseminated through support groups (UK and the Netherlands) and outpatient endocrinology clinics (Germany). Challenges associated with diagnosis, treatment, support and the future were identified. For UK parents, the diagnosis period was characterised by a lack of awareness amongst healthcare professionals and occurrences of adrenal crisis. Parents reported burden, anxiety and disruption associated with the intensive treatment regimen. Parents adjusted and gained confidence over time yet found delegating responsibility for medication difficult and worried about the future for their child. Access to psychological support and contact with other families was reported as highly beneficial. The findings of the study provide critical context for future studies and for informing how parents and families can be better supported. Prenatal genetic counselling for parents who already have an affected child will include an explanation of recurrence risk but should also focus on providing information and reassurance about diagnostic testing and care for their newborn.     

La famille face aux violences extrafamiliales : émotions et victimisation dans la narration de parents et enfants en UMJ

The traumatic impact linked to the revelation of an assault, at the time of the announcement of the abuse, but also in the daily life of the family, disrupts the family system. This study aims to compare the perception of the parent and his child when the child has been the victim of a sexual, psychological and/or physical extra-family assault, particularly around emotions, guilt and the victimization experience. The exploratory research approach is through the qualitative analysis of the content of interviews conducted with parents and children received by the Medico-Judiciary Unit (UMJ) and the Youth Victims Reception Unit. (UAJV). Our results show the presence of a strong emotional state in parents that results in anger, as well as a difficulty in naming emotions in their children. Children have difficulty to express their emotions, but everyday life seems less difficult than parents. Despite the limitations due to the small sample and the conditions for data collection, recommendations for clinical treatment of families are proposed.     

Barriers to Adherence to Child Assessment Recommendations

We conducted a one-year follow-up study of child psychoeducational assessment cases to examine whether and how the assessments were helpful to families. The current report focuses on parents’ views of their child’s assessment as well as the parents’ adherence with the written recommendations provided to them following their child’s assessment. Fifty-one of 72 eligible parents whose child received an assessment in an urban, Midwest university clinic participated. Based on semistructured interviews with the parents about the assessment recommendations, we grouped the recommendations and any barriers to adherence the parents mentioned into categories, and we also rated the clarity and complexity of the recommendations. Findings showed that, on average, parents identified the assessment process as useful and attempted or fully adhered to 71.5?% of recommendations. Parents reported the lowest adherence when referrals were recommended for their child to be seen by other professionals such as a pediatrician or psychiatrist; and they cited significantly more stigma barriers for recommendations to seek counseling/therapy or psychotropic medication than for recommendations pertaining to changes at home or school. Higher parental compliance was predicted by a combination of parents reporting fewer barriers and receiving more home based recommendations. The results support the utility of psychological assessments from parents’ perspectives and suggest ways in which psychologists may increase the likelihood that parents will adhere to their recommendations.     

Assessing the impact of disasters on helpers

This paper compares the effectiveness of the General Health Questionnaire (GHQ-30) and the Impact of Event Scale (IES) for assessing the impact of disasters on volunteers involved in the rescue work following the Armenian earthquake. The IES gave fewer zero scores and so was less likely to result in helpers being labelled symptom-free when they were not. It was conclude that IES was a more sensitive instrument and a more effective means of assessing the psychological consequences of disaster work.     

The false consensus bias as applied to psychologically disturbed adolescents

In order to examine whether the false consensus bias applied to psychologically disturbed adolescents, outpatients at a rural mental health center who described themselves as very depressed or suicidal, and nondisturbed teenagers (who had no history of psychological treatment and were not at that time seeking psychological treatment), were asked to read a newspaper article about either a child's suicidal or viral illness death. Both groups of adolescents, like adults in previous research, viewed the suicidal child and the surviving family more negatively than they did the child and survivors of a viral illness death. Further, consistent with the false consensus hypothesis, adolescent clients viewed either child as more psychologically disturbed than did nonclients. Also, clients, as compared to nonclients, viewed both parents as more psychologically disturbed prior to either child's death. Results somewhat support the hypothesis of a false consensus bias which operates for depressed, suicidal adolescents when they view the tragedy of a child's death, but not when they are making recommendations about psychological help for the surviving family. Results are interpreted as suggesting that adolescent outpatients either view therapy as not particularly beneficial or as not particularly appropriate for bereaved individuals.     

Prospective effects of interparental conflict on child attachment security and the moderating role of parents' romantic attachment.

This study investigated the impact of parents' observed conflict behavior on subsequent child attachment security, both as a main effect and as moderated by parents' romantic attachment. Participants were 80 heterosexual couples involving men from the Oregon Youth Study and their first-born children. The authors used hierarchical linear modeling to predict child security with each parent. Interparental psychological aggression predicted lower child security with father, regardless of romantic attachment. If the father was insecure, interparental positive engagement predicted lower child security with him. If either the mother or father was avoidant, interparental withdrawal did not predict lower child security, though it did for more secure parents. Results are discussed in terms of implications of attachment-(in)congruent behavior for parents' emotional availability.     

Parents’ and psychotherapists’ goals prior to psychodynamic child psychotherapy

In order to explore goals of parents and psychotherapists prior to child psychotherapy, the following questions were asked: (1) How are goals for psychotherapy formulated? (2) How can similarities and differences between parents’ and psychotherapists’ goals be understood? Questionnaires regarding psychodynamic child psychotherapies (n = 33) with parallel parental work were analysed using qualitative methodology. The child psychotherapists’ goals were often connected to the intrapsychic and relational development of the child. The parental therapists formulated goals focused on providing support to parents. The parents’ goals, on the other hand, concerned to a great extent giving the child help and to a lesser degree receiving help for themselves. They expressed their expectations concerning the child’s psychological development with a more everyday use of language, often with an emphasis on general psychological wellbeing. The study also indicated that parents had limited knowledge about the therapy’s implementation and framework. Some clinical conclusions could be made. Negotiating goals prior to parental and child psychotherapy can help create realistic expectations and promote a beneficial therapy situation.     

Assessment of Parental Disclosure of a 22q11.2 Deletion Syndrome Diagnosis and Implications for Clinicians

Most children with chromosome 22q11.2 deletion syndrome (22q11DS) have an IQ in the range that may allow them to be capable of understanding a genetic diagnosis despite mild intellectual disabilities. However, there are no publications that relate to the disclosure of a 22q11DS diagnosis to the affected child, or the factors that influence parents’ disclosure to the child. A pilot study was conducted including eight semi-structured interviews with caregivers of children with 22q11DS, 10 to 17?years of age, to investigate the factors that influence how parents inform their children of the diagnosis. Six of eight participants had disclosed the diagnosis to the child, and most of these parents felt they could have benefited from additional advice from professionals to increase their confidence and success, as well as the child’s comprehension of the information. Those who had not informed the child were uncertain about the words to use, how to initiate the conversation, or were concerned about the child’s level of understanding. Our results demonstrate that genetics professionals should help prepare caregivers for conversations with their children about the diagnosis of 22q11DS, monitor the understanding of the diagnosis over time, and provide ongoing support.     

Interventions to Empower Adults with Eating Disorders and Their Partners around the Transition to Parenthood

The transition to parenthood is perceived as a stressful life event, when parents experience an immense change of their psychological focus and a reorientation of roles and responsibilities in the family system. This process may be even more challenging in the presence of a parental eating disorder history. This paper reviews the impact of parental eating disorders on the parents, the couple relationship, and their child during the perinatal period. A parental eating disorder is associated with more negative expectations of parental efficacy as well as specific difficulties in couple communication over the child’s feeding, shape, and weight. Providers who better understand the effects of an eating disorder on parental functioning can more effectively intervene early on. We also present couple- or parent-based, empirically supported interventions for adults with eating disorders and their partners in the prenatal and postnatal periods: Uniting Couples in the treatment of Anorexia Nervosa (UCAN) and Uniting couples In the Treatment of Eating disorders (UNITE) both enhance recovery from the eating disorder through a couple-based intervention; the Maudsley Model of Treatment for Adults with Anorexia Nervosa (MANTRA) incorporates the support of partners, when appropriate; Parent-Based Prevention (PBP) focuses on improving parental functioning and reducing risk of negative parental and child outcomes. Finally, we discuss the clinical implications of addressing parental eating disorders and encourage more research on these families.     

The Role of Maternal Communication Patterns About Interparental Disputes in Associations Between Interparental Conflict and Child Psychological Maladjustment

The present study examined the role of mothers’ communication with children about interparental disputes in associations between interparental conflict and child psychological maladjustment in a sample of 227 children and their parents followed over a one-year span. Most of the time (i.e., 79.8%) mothers reported that they would communicate with their children following interparental disputes, with the vast majority of those communications containing relatively constructive depictions of interparental conflict. Post-conflict communications were not associated with children’s adjustment above and beyond the impact of interparental conflict. However, maternal communications underscoring family cohesion and warmth, emphasizing remorse for engaging in the interparental disagreement, and denying the occurrence of the dispute each moderated associations between interparental conflict and child externalizing symptoms in distinct, complex ways. The findings in general suggest that not all positive communications have the beneficial impact on children that parents may have intended.     

父母感知的家庭压力对儿童问题行为的影响：父母心理攻击和儿童应激下皮质醇反应的中介作用

儿童问题行为受到环境与个体因素的协同影响。研究以北京150名五、六年级儿童及其家长为被试,探究心理攻击和应激下皮质醇反应在父母感知的家庭压力与儿童问题行为间的中介作用。采用儿童版特里尔社会应激测试测量儿童应激下皮质醇反应,并由家长报告感知的家庭压力、对儿童的心理攻击及儿童的问题行为。结果发现：(1)父母感知的家庭压力可正向预测儿童问题行为;(2)心理攻击在父母感知的家庭压力与儿童问题行为间起中介作用;(3)心理攻击和儿童应激下皮质醇反应在父母感知的家庭压力与儿童问题行为之间起链式中介作用。研究揭示了父母感知压力对儿童问题行为影响的心理和生理机制,从父母和儿童角度为减少儿童问题行为提供了参考。     

Réflexions autour du processus de parentalité : quelles étapes et quelles spécificités dans l’adoption ?

Parenthood is a process lead by the desire of child and its project. The expectation of a child generates psychological reorganization but its reality will induce modification for the parental couple. We are questioning the process of parenthood amid the encounter of 18 couples divided according to crossed variables: nature of parenthood and its time. Childhood attachment patterns are questioned. The insecure attachment models with more perceived stress are frequent for new parents, the child being biological or adopted. This suggests the necessity to think the welcoming of the child and the couple's preparation to the welcoming together with an accompaniment for at least the first year of the child.