Psychosocial problems, coping strategies, and the need for information of parents of children with Prader-Willi syndrome and Angelman syndrome

The aim of the present study was to identify the psychosocial problems of parents of a child with Prader-Willi syndrome or a child with Angelman syndrome. In addition, the strategies these parents apply to cope with these problems as well as their need for information are described. To assess these topics, parents filled in a self-report questionnaire. Both parent groups were found to have a high need for information, high feelings of loss of control, relatively high depressive feelings, particularly in mothers in both syndrome groups. Differences due to the type of syndrome were found on the fear factor. Parents of a child with Angelman syndrome had greater feelings of fear for the negative consequences for themselves, whereas parents of Prader-Willi children were more concerned about the consequences for the child. In general, coping strategies were not found to be different between the parent groups of children who had either type of syndrome.     

Disclosure of donor insemination to the child: the impact of Swedish legislation on couples' attitudes

The question whether or not parents of children conceived after donor insemination (DI) tell their offspring about its biological background was addressed. Swedish legislation from 1985 gives the child born after DI the right, when grown up, to receive identifying information about the sperm donor. Until now no information about compliance with the law has been available. All parents who gave birth to a child by DI after the new legislation in two major Swedish fertility centres (Stockholm and Umea) received a questionnaire containing questions about the issue of informing the child. The response rate was 80%. The majority of parents (89%) had not informed their children, whereas 59% had told someone else. As a response to an open question, 105/132 parents chose to comment on their answer about not having informed their child. Of these families, 61 intended to tell their child later, 16 were not sure and 28 were not going to inform the child. Compliance with the law must be regarded as low since only 52% of the parents had told or intended to tell their child. In addition, concern is raised about the children who run the risk of being informed by someone other than their parents.     

Actigraphy and parental ratings of sleep in children with attention-deficit/hyperactivity disorder (ADHD)

STUDY OBJECTIVES: To assess various sleep parameters in latency-aged children with ADHD and their normally developing peers through the use of multiple sleep measures. DESIGN: Six sleep parameters were evaluated for two groups of children, ADHD and normal comparison. Each group consisted of 25 children (20 males, 5 females) who ranged in age from 7 to 11 years. All children underwent rigorous diagnostic procedures and the ADHD subjects were selected only if they displayed pervasiveness in their symptomatology and were medication naive. Parents completed a retrospective questionnaire which evaluated sleep problems over the past six months. Additionally, each child wore an actigraph for seven consecutive nights, and the child's parents completed a sleep diary during this time period. SETTING: N/A. PATIENTS or PARTICIPANTS: N/A. INTERVENTIONS: N/A. RESULTS: Based on the findings from the questionnaire, parents of children with ADHD reported significantly more sleep problems than parents of normally developing children. However, the majority of these sleep differences were not verified through actigraphy or sleep diary data, with the exception of longer sleep duration for children with ADHD and parent reports that describe increased bedtime resistence. It was also found that child-parent interactions during bedtime routines were more challenging in the ADHD group. CONCLUSIONS: Despite the possibility of intrinsic sleep problems such as longer sleep duration, results indicate that many of the sleep problems of children with ADHD may be due to challenging behaviours during bedtime routines. The reason for discrepancies among sleep studies employing objective measures as well as between retrospective and prospective measures are discussed.     

Parents,their children,whole exome sequencing and unsolicited findings: growing towards the child’s future autonomy

In a previous study we found that parents of children with developmental delay (DD) favoured acceptance of unsolicited findings (UFs) for medically actionable conditions in childhood, but that preferences diverged for UFs with no medical actionability, or only in adulthood, and regarding carrier status. Sometimes the child’s future autonomy formed a reason for withholding UFs for the present, despite an unfavourable prognosis concerning the child’s cognitive capabilities. This might be different for children undergoing whole exome sequencing (WES) for reasons other than DD and who are expected to exert future autonomy. This is the focus of the current study. We conducted nine qualitative, semi-structured interviews with parents of children, ages <1–15, after consenting to WES, but prior to feedback of results, and with three adolescent children. Several parents wished to receive any information that might in whatever way be relevant to the health and well-being of their child, and to a lesser extent wished the inclusion of information about non-actionable disorders and information concerning carrier status of autosomal recessive disorders. Although parents understood the rationale behind the centre’s UFs disclosure policy, they also felt that they needed this information in order to be able to exert their parental responsibility and take good care of a child still dependent on them. Parents reason from their notion of parental responsibility but are also inclined to take adolescent children’s preferences seriously and acknowledge the child’s incipient autonomy as a ground for granting an increasing degree of self-determination on the road to adulthood.Subject terms: Medical ethics, Genetic counselling     

Parent perceptions,beliefs, and fears around genetic treatments and cures for children with Angelman syndrome

Genetic therapies have shown recent promise in alleviating some of the cognitive issues associated with some genetic disorders; however, these therapies may come with significant health and socio‐ethical concerns, particularly when they involve child participants. Little is known about what parents of children with genetic disorders think about genetic therapies, or about their knowledge of how genetic‐based therapy might treat their child's symptoms. Forty‐two parents of children with Angelman syndrome (AS) and 27 parents of a mixed etiology comparison group completed an online survey reporting on their perceptions of, and priorities for, genetic therapy. Almost all parents of children with AS (95%) and the comparison group (89%) agreed that treatments aiming to reduce symptoms associated with their child's syndrome were positive. However, significantly more parents of children with AS (95%) than the comparison group (56%) felt that genetic treatment trials aiming to “cure” their child should be a research priority. AS parent priorities for the focus of clinical trials were neurology/seizures, communication skills, and motor skills/mobility. For the comparison group, the priorities were IQ, immune response, and expressive speech. Parents of both groups did not want treatments to change their child's personality or their happiness. Global assumptions cannot be made about targets for therapy between syndromes, about parental understanding of genetics, or about research evidence across syndromes. This study highlights the need for true family and patient engagement in all stages of the research design and treatment evaluation.     

Detection of child mental health disorders by general practitioners

BACKGROUND: Few children with mental disorders access specialist services. Although previous studies suggest that general practitioner (GP) recognition is limited, parents may not be presenting these problems. AIM: To compare GP recognition of disorders with child mental health data and to examine factors affecting recognition, in particular whether recognition is enhanced if the parent expresses concern during the consultation. DESIGN OF STUDY: A two-phase design involving an initial community survey of children between the ages of 5 and 11 years. In the second phase, primary care attenders who were regarded by their GP as having a mental health disorder were compared with those who were not. SETTING: Five general practices in Croydon, outer London. METHOD: For 186 children attending primary care, GP recognition of disorders was compared with the results of a child mental health questionnaire completed by parents. Accuracy and predictors of GP recognition were examined. RESULTS: Seventy-four per cent of children meeting criteria for caseness were not recognised by GPs as having a mental health disorder. The expression of parental concern in the consultation about a mental health problem increased the sensitivity of recognition from 26% to 88%. Expression of concern also increased GP recognition of non-cases; this reflected GP identification of other mental health and learning problems. Only a third of parents who had concerns expressed these during the consultation. CONCLUSIONS: GPs are responsive to concern and take parental views into account. As well as detecting disorders, GPs are also sensitive to other psychosocial and educational problems that may present in primary care. There is a need for parental education about child mental health disorders.     

Perception of burden among at-risk women of raising a child with fragile-X syndrome

On a self-administered questionnaire 31 women at-risk for bearing children with fragile-X syndrome (FXS) were asked to judge the magnitude of the problems they perceived to be associated with raising an affected child. An age- and education-matched group of women with no family history of FXS was asked to predict the seriousness of problems they might encounter were they to bear a child with a handicapping condition. Mothers of children with FXS reported that they were experiencing fewer and different problems than FXS relatives who did not have affected children predicted they themselves would experience. The perceptions of the burden of raising a handicapped child of FXS relatives without affected children were more similar to those of the comparison group than to those of FXS mothers. This suggests that women who raise a child with FXS learn to cope with an unchangeable situation, and consequently their perceptions of the burdens ease with time. A direct relationship between the acceptability of selective abortion and the perceived seriousness of the problems associated with having an affected child was observed.     

Don't run with scissors: young children's knowledge of home safety rules

OBJECTIVE: To examine 4- to 6-year-old children's knowledge of their parents' home safety rules and to identify predictors of children's home injuries. METHODS: Within the context of an interview, parents completed a home safety questionnaire in which they specified home safety rules, rated their child's compliance with each rule, explained not having rules, reported on maternal supervision, and reported on the frequency of their child's injuries. We evaluated children's knowledge of home safety rules by having them play a home safety game designed for this study. RESULTS: Children spontaneously recalled only about half of their parents' home safety rules. Prompting resulted in their recognition of about 40% more rules. However, children's knowledge scores did not predict the frequency of their injuries. The best predictors of children's injuries were children's compliance with home safety rules and extent of parental supervision. CONCLUSIONS: These findings suggest that interventions to promote young children's safety knowledge will not likely reduce childhood injuries unless children consistently comply with these rules or parents supervise children to ensure compliance.     

Bed sharing, sleep habits, and sleep problems among Chinese school-aged children

STUDY OBJECTIVES: This study examined the association between bed sharing, sleep habits, and sleep problems among Chinese school-aged children. DESIGN AND SETTING: A questionnaire survey of school-aged children was undertaken in Jinan city, People's Republic of China, in 2001. PARTICIPANTS: A total of 517 elementary-school children (mean age, 10.5 years; 47.4% boys) participated in the survey. MEASUREMENTS: The parents completed the Chinese version of the Children's Sleep Habits Questionnaire and a number of questions that asked about bed sharing and characteristics of the family and child. RESULTS: The prevalence of regular bed sharing in Chinese school-aged children was as high as 18.2%. The rate of bed sharing did not differ between boys and girls but significantly decreased with age from 55.8% in 7-year-olds to 7.2% in 11- to 13-year-olds. Multivariate logistic regression analysis showed that younger age, poor physical health of the child, and crowded housing were associated with an increased likelihood for the child's bed sharing with parents. Bedtime and total sleep duration did not significantly differ between children who shared beds and those who slept alone. Children who shared beds with their parents were reported to have more sleep anxiety and daytime sleepiness than children who slept alone. Bed sharing was not associated with parasomnias and breathing problems during sleep. CONCLUSIONS: Regular bed sharing in Chinese school-aged children was very common and significantly decreased with age. Crowded housing and poor physical health of the child increased the likelihood for children and parents to share beds. Bed sharing may exert influences on sleep quality rather than sleep quantity.     

Parents' perspective on having a child with Down Syndrome in France

In 2011, Skotko, Levine, and Goldstein asked parents who had children with Down Syndrome (DS) in the United States how they felt about having a child with DS. The purpose of the present study was to ask the same questions to parents living in France so that this information could be shared with new and expectant parents. The results were also compared to the findings of Skotko, Levine, and Goldstein (2011a) to see whether some parental feelings might be universally shared and to discuss the differences observed. This web‐based survey was shared with a number of DS organizations and online DS communities. Of the 369 respondents living in France, 99% indicated that they loved their son or daughter with DS; 98% were proud of their child with DS; 78% felt that their outlook on life was more positive because of their son or daughter with DS; 12% felt embarrassed by their child with DS; and 7% expressed regret for having a child with DS. A significant number of respondents admitted that raising a child with DS was not without challenges. Nevertheless, most respondents indicated that their son or daughter with DS had had a positive impact on their life and that of their family and that they were happy to have their child.     

'You know what boys are like': pre-diagnosis experiences of parents of children with autism spectrum conditions

Background

The importance of early identification and intervention for children with autism spectrum conditions (ASC) has been established. However, there are often considerable delays from initial concern (by parent or professional) to diagnosis. Little is known about parents'' experiences of primary care in the pre-diagnosis period.

Aim

To identify feasible improvements to the management of primary care consultations with parents of children who might have ASC.

Design and setting

UK-based qualitative interview study.

Method

Semi-structured interviews with a diverse qualitative sample of 24 parents of children, aged between 3 and 11 years, who were diagnosed with ASC.

Results

Three types of parental concern emerged: first, parents who had no concerns about their children''s development before their diagnosis; secondly, parents who reported that they had some concerns but had not raised them with health professionals (passive concern); and thirdly, parents who had raised concerns about their children with health professionals (active concern). The passively concerned parents could not pin down exactly what it was about their children''s development that concerned them. Many of the actively concerned parents had been prematurely reassured by health professionals that there was nothing wrong. This left them feeling isolated and alone. Actively concerned parents who already had a child diagnosed with ASC did not experience a delay in diagnosis.

Conclusion

Health professionals should acknowledge parents'' concerns carefully; contrary to intentions, early reassurance may result in parents feeling that their concerns have not been heard. Parents may be the best resource in identifying ASC.     

Educating and counseling of parents of children with attention-deficit hyperactivity disorder

OBJECTIVE: This study surveys the parents' knowledge and attitude about attention-deficit hyperactivity disorder (ADHD), barriers to enrolment for treatment, parents' source of information, reason for delay in treatment, and the first person who suggests the diagnosis of ADHD. METHOD: The subjects of the study were the 119 parents and their children with ADHD. The parents and their children were interviewed and the mothers completed a self-reported questionnaire about ADHD. RESULTS: The knowledge about ADHD was relatively low. Half of them did not agree that ADHD is due to biological and genetic vulnerabilities and causation. Fifty-two percent of all the parents considered ADHD to be the result of parental spoiling. Only 6.2% reported that ADHD relate difficulties would persist for the whole life. About 40% of the respondents considered it as a sign of child independency. The main source of knowledge about ADHD was radio and TV. There were about 1.5 years between the time that the parents were suspected to the ADHD and the time they referred for the first time. The most common reason for the delay was lack of knowledge about where or whom they should refer to. Teachers were the first one who suggested the diagnosis of ADHD in most of the cases. CONCLUSION: Knowledge about ADHD is low and barriers of referral are not usually overcome. PRACTICE IMPLICATIONS: Educating and counseling of the parents should be directed toward emphasizing it as a biological problem, with concerns about its course. Also, targeting of the barriers in delaying the referral is an important issue. Medical personnel, especially GPs should be more informed about ADHD and play more active role in the treatment process.     

Factors influencing parental decision about genetics evaluation for their deaf or hard-of-hearing child

PurposeTo identify factors that are associated with why parents of deaf children who have had GJB2/GJB6 testing as part of a genetics research study do or do not take their children for genetics evaluation.MethodsSelf-administered questionnaire was completed by parents of a deaf child participating in a GJB2/GJB6 testing study.ResultsA total of 30 parents (representing 24 children) completed the questionnaire; 11 of 24 children (46%) underwent a genetics evaluation. Compared with parents who did not take their child for a genetics evaluation, those who did were more likely to (1) have supportive pediatricians, (2) feel it was important or would be helpful to their child, (3) recall the recommendation for evaluation, (4) have family members who wanted the child to have an evaluation, and (5) be Hispanic or Asian. Genetic test results, knowledge of genetics evaluation, psychosocial factors, language concerns, or structural factors were not substantively associated with attending a genetics evaluation.ConclusionParental perceptions, family environment, and pediatricians play a role in decisions regarding genetics evaluation. Because genetic testing for deafness likely will occur outside of traditional genetics clinics and without comprehensive genetics evaluation, efforts to increase pediatricians' awareness of the usefulness of genetics evaluation may be essential to ensure appropriate care for deaf and hard-of-hearing children as recommended by the American College of Medical Genetics.     

Modification of problem interaction in mother-child dyads by modeling and behavior rehearsal

Eighteen mother-child dyads who previously had reported difficulties in solving problems were assessed behaviorally in situations in which they attempted to resolve conflicts. Half the dyads then were given two treatment sessions that consisted of modeling and rehearsal designed to improve their skills in resolving problems situations. In the pretest assessment a number of significant correlations between mother and child responses were found. Notably, when mothers blamed or used direct arbitrary power with their children, the children in turn emitted oppositional behaviors, but when the mothers made tentative proposals, their children reciprocated with positive responses. In the posttest assessment, treatment mothers employed the expression of feelings to their children as a conflict resolution strategy significantly more often than did control mothers. There was also a tendency for the treatment children to acquiesce less to their mothers' demands than did control children in the problem situations.     

Troubles psychiques des enfants de parents sans papiers

The authors and child psychiatrists are concerned about the psychological effects on children who are victim of the current policy on families without regular residence permits (regularization is increasingly restricted). These children often live for many years in hotels; they lead a life of insecurity and promiscuity, which is prejudicial to their development. The risk of expulsion makes their future uncertain. The authors denounce a form of abuse that has traumatic social and political effects on the parents and children; the symptoms are not specific, but are of concern due to their frequency and intensity. The treatment of these families requires social networking, which can be mentally exhausting due to a lack of financial and human resources. However, it is a public health issue and an ethical obligation concerning children's rights.     

Parents' awareness of and knowledge about young children's urinary tract infections

OBJECTIVE: To provide insight into parents' awareness of and knowledge about urinary tract infections (UTIs) in young children. METHODS: Twenty interviews with parents who had a child recently diagnosed with a UTI were audiotaped, transcribed verbatim, and qualitatively analysed. RESULTS: Most parents knew the typical symptoms related to UTI. But, according to the parents, neither they nor all general practitioners (GPs) thought of a UTI in case of atypical symptoms. The awareness that UTI can be a serious illness usually came to parents later, partly because health care workers often did not explicitly mention this. According to the parents, health care workers should be more aware of UTIs in children. Parents felt that health education or mass screening might not be desirable because it would increase anxiety or would be perceived as not relevant. CONCLUSION: Parents could not consistently recognise UTI in their children and were most times unaware of the possible consequences of a UTI. Nevertheless, parents were sceptical about health education and mass screening. PRACTICE IMPLICATIONS: There seems little scope for health education addressed at parents or screening for UTI in young children. Instead, physicians and nurses should be alert for the possibility of UTIs in young children, and more information should be given once a UTI is diagnosed.     

Factors associated with perceived uncertainty among parents of children with undiagnosed medical conditions

Uncertainty is a pervasive characteristic of illness. Yet little is known about the individual or situational factors that contribute to perceptions of uncertainty. The present study aims to examine the factors that contribute to perceived uncertainty among parents of a child with an undiagnosed condition. Two hundred sixty-six parents of a child, or children, affected by an undiagnosed medical condition for at least 2 years completed an electronically administered mixed-methods survey assessing theoretical predictors of perceived uncertainty. Multivariate linear regression analyses were used to identify the relationship of key variables to perceived uncertainty. Parents' perceived control and optimism were negatively associated with uncertainty (B=-4.044, P≤0.001, B=-0.477, P≤0.05). Subjective disease severity was positively associated with perceived uncertainty (B=1.797, P≤0.05). Our findings suggest that parents who experience greater uncertainty feel less control over their child's medical condition, which may lead to less effective coping and poorer adaptation. Parents who are less optimistic or who perceive their child's disease as more severe may benefit most from interventions that target situations where parents perceive the least control, thereby enhancing coping and ultimately, adaptation.