Carrier testing of children for two X-linked diseases: a retrospective evaluation of experience and satisfaction of subjects and their mothers

Carrier testing of children for inherited disease that will not affect the health of the children themselves but of their future children is generally regarded as problematic. In this retrospective study, we determined how young women had experienced genetic carrier testing when they were children. The families of 66 young females who had been tested for carriership during childhood between 1984 and 1988, were approached. Of them, 23 young females in families affected by Duchenne muscular dystrophy, and 23 young females in families affected by hemophilia A, and their mothers, participated in our study. We used a questionnaire including multiple-choice and open-ended questions. We recorded general attitudes to testing, satisfaction with testing, degree of trust in test results, making decisions regarding testing, privacy, and opinions about age at testing. Thirty-five out of 46 of the young women tested (76%) were satisfied with carrier testing in childhood. However, the young women in whom the test results had been uncertain were statistically more often unsatisfied with the testing than those who had been found or not found to be carriers (p = 0.002). In each group, the opinions of mothers were parallel to those of their daughters. Seventy-eight percent of daughters regarded carrier testing as a family matter in which parents can make a decision. About half of those tested recalled that they had been allowed to participate in decision-making in a satisfying way. Thirty-nine out of 46 (85%) of the young women tested, and 33/46 (72%) of the mothers, suggested that carrier testing should be performed in childhood or during teenage years.     

The Controversy Over Pediatric Bariatric Surgery

Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity—whether it should be considered primarily a medical condition or more a psychosocial problem—seem to affect the specialists’ normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents’ feelings regarding both being able to influence their child’s health and their child being able to control their own condition, and the adolescents’ sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views—e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure—play an important role in the acceptability of bariatric surgery for childhood obesity.     

Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

Background:

The choice between palliative chemotherapy (defined as the use of cytotoxic medications delivered intravenously for the purpose of our study) and supportive care alone is one of the most difficult decisions in pediatric oncology, yet little is known about the preferences of parents and health care professionals. We compared the strength of these preferences by considering children’s quality of life and survival time as key attributes. In addition, we identified factors associated with the reported preferences.

Methods:

We included parents of children whose cancer had no reasonable chance of being cured and health care professionals in pediatric oncology as participants in our study. We administered separate interviews to parents and to health care professionals. Visual analogue scales were shown to respondents to illustrate the anticipated level of the child’s quality of life, the expected duration of survival and the probability of cure (shown only to health care professionals). Respondents were then asked which treatment option they would favour given these baseline attributes. In addition, respondents reported what factors might affect such a decision and ranked all factors identified in order of importance. The primary measure was the desirability score for supportive care alone relative to palliative chemotherapy, as obtained using the threshold technique.

Results:

A total of 77 parents and 128 health care professionals participated in our study. Important factors influencing the decision between therapeutic options were child quality-of-life and survival time among both parents and health care professionals. Hope was particularly important to parents. Parents significantly favoured chemotherapy (42/77, 54.5%) compared with health care professionals (20/128, 15.6%; p < 0.0001). The opinions of the physician and child significantly influenced the parents’ desire for supportive care; for health care professionals, the opinions of parents and children were significant factors influencing this decision.

Interpretation:

Compared with health care professionals, parents more strongly favour aggressive treatment in the palliative phase and rank hope as a more important factor for making decisions about treatment. Understanding the differences between parents and health care professionals in the relative desirability of supportive care alone may aid in communication and improve end-of-life care for children with cancer.Despite the substantial improvements in rates of cure among children with cancer, some children will have progressive or recurrent disease and will die.¹ Cancer remains the second most common cause of death for North American children between 5 and 14 years of age.^2–4 When cure becomes unlikely, parents and health care professionals are often faced with the decision to continue further aggressive treatments or to provide relief from symptoms alone.¹The choice between palliative chemotherapy and supportive care alone is one of the most important and difficult decisions for parents of children whose disease cannot be cured.⁵ At this point, the goals of therapy are usually to maximize the child’s quality and length of life and to ensure respect for the family’s and child’s preferences.⁶Given the difficult nature of this decision, it is worthwhile to compare and contrast the perspectives of parents and health care professionals. Discordance in these perspectives could heighten the anxiety felt by patients and parents and might lead to their dissatisfaction with the care received. One qualitative study that interviewed parents of children with recurrent cancer found that “fearing disagreement with staff” was an important negative factor in decision-making.⁷ However, little is known as to whether the attitudes of parents and health care professionals toward therapeutic options are congruent.The goal of this study was to compare the strength of preference between parents and health care professionals for supportive care alone versus palliative chemotherapy for children whose cancer has no reasonable chance of being cured, and to determine how specific factors affect these preferences.     

Trend in Height of Turkish and Moroccan Children Living in The Netherlands

ObjectivesTo study trends in height of Turkish and Moroccan immigrant children living in The Netherlands, to investigate the association between height and background characteristics in these children, and to calculate height-for-age-references data for these groups.DesignNationwide cross-sectional data collection from children aged 0 to 18 years by trained professionals in 1997 and 2009. The study population consisted of 2,822 Turkish 2,779 Moroccan, and 13,705 Dutch origin children in 1997and 2,548 Turkish, 2,594 Moroccan, and 11,255 Dutch origin children in 2009. Main outcome measures: Mean height in cm, and mean height standard deviation scores.ResultsIn 2009, mean height at the age of 18y was similar for Turkish and Moroccan children: 177 cm for boys and 163 cm for girls, which was 2 to 3 cm taller than in 1997. Still, Turkish and Moroccan adolescents were 5.5 cm (boys) to 7 cm (girls) shorter than their Dutch peers. No significant differences were found in mean height standard deviation scores across the educational level of the parents, geographical region, primary language spoken at home, and immigrant generation.ConclusionsWhile the secular height increase in Dutch children came to a halt, the trend in Turkish and Moroccan children living in The Netherlands continued. However, large differences in height between Turkish and Moroccan children and Dutch children remain. We found no association with the background characteristics. We recommend the use of the new growth charts for children of Turkish and Moroccan origin who have a height-for-age below -2SD on the growth chart for Dutch children.     

Fetal alcohol spectrum disorders: an overview with emphasis on changes in brain and behavior

Fetal alcohol spectrum disorders constitute a major public health problem. This article presents an overview of important issues that surround these disorders and emphasizes the structural and neurobehavioral consequences associated with prenatal exposure to alcohol. Diagnostic criteria are discussed, and possible moderating factors for the range of outcomes are mentioned. In addition, the prevalence of fetal alcohol spectrum disorders is described, and estimates of the financial impact of these disorders are given. Heavy prenatal alcohol exposure can severely affect the physical and neurobehavioral development of a child. Autopsy and brain imaging studies indicate reductions and abnormalities in overall brain size and shape, specifically in structures such as the cerebellum, basal ganglia, and corpus callosum. A wide range of neuropsychological deficits have been found in children prenatally exposed to alcohol, including deficits in visuospatial functioning, verbal and nonverbal learning, attention, and executive functioning. These children also exhibit a variety of behavioral problems that can further affect their daily functioning. Children exposed to alcohol prenatally, with and without the physical features of fetal alcohol syndrome, display qualitatively similar deficits. Determining the behavioral phenotypes that result from heavy prenatal alcohol exposure is critical, because the identification of these children is crucial for early interventions. In addition, knowing which brain areas are involved might enable the development of better intervention strategies. However, intervention needs to go beyond the affected individual to prevent future cases. As evidenced by the staggering financial impact these disorders have on society, prevention efforts need to be aimed at high-risk groups, and this issue needs to be made a high priority in terms of public health.     

Contraceptive implants: long acting and provider dependent contraception raises concerns about freedom of choice.

David Bromham''s editorial on contraceptive implants ignores the wider issues to voice concern that trial by media could limit contraceptive choice by jeopardising research into new methods. However, it is more beneficial to the public for points of conflict to be debated openly. Furthermore, the impetus for research into new contraceptive technology is driven by profit and political motives and is only marginally affected by the media. Implanted contraceptives may increase the choice of contraceptive methods, but they put control of fertility increasingly into the hands of the medical profession. Herein lies their greatest problem: their potential to increase providers'' control over clients'' choice. There is the danger that certain groups of women may be targeted for their use: in the United States the coercive use of Norplant for mothers receiving welfare benefit has been suggested. Long acting contraceptives are a contraceptive of choice only when they are available without pressure, as part of a wider menu; when instant removal on request is guaranteed; and when there is an open and free flow of information and opinions between users, health professionals, and special interest groups.     

Croatian children's views towards importance of health care information

The aim of research was to investigate: the need for health care information of Croatian adolescents aged from 13 to 18 years; the difference in evaluation of the frequency of receiving information between hospitalized and healthy children; if the hospitalized children expectations about the frequency of receiving health care information differed significantly from information they have actually received; whose information was most comprehensible to the hospitalized children (doctors, parents, other health care givers). The children were either hospitalized in the pediatrics departments or were high schools pupils (healthy children). The hospitalized children "Completely agreed" (92.7%) with the statement "When I am sick, I should receive information about my health" in comparison to the healthy children (85.1%). In comparison to healthy children, the hospitalized children assessed that doctors, other health care givers and parents should give them information more frequently. The experience of hospitalized children indicate that they received less information then they have actually excepted. The information received from doctors was mostly in correlation with the understanding of this information. We concluded that the children want to be informed about their health, especially hospitalized children. Health care professionals should offer understandable health care information according to the children's expectation.     

Medical Humanitarianism Under Atmospheric Violence: Health Professionals in the 2013 Gezi Protests in Turkey

During the 2013 Gezi protests in Turkey, volunteering health professionals provided on-site medical assistance to protesters faced with police violence characterized by the extensive use of riot control agents. This led to a government crackdown on the medical community and the criminalization of “unauthorized” first aid amidst international criticisms over violations of medical neutrality. Drawing from ethnographic observations, in-depth interviews with health care professionals, and archival research, this article ethnographically analyzes the polarized encounter between the Turkish government and medical professionals aligned with social protest. I demonstrate how the context of “atmospheric violence”—the extensive use of riot control agents like tear gas—brings about new politico-ethical spaces and dilemmas for healthcare professionals. I then analyze how Turkish health professionals framed their provision of health services to protestors in the language of medical humanitarianism, and how the state dismissed their claims to humanitarian neutrality by criminalizing emergency care. Exploring the vexed role that health workers and medical organizations played in the Gezi protests and the consequent political contestations over doctors’ ethical, professional, and political responsibilities, this article examines challenges to medical humanitarianism and neutrality at times of social protest in and beyond the Middle East.     

The burden of malaria in Sudan: incidence, mortality and disability – adjusted life – years

Background

The goal of Roll Back Malaria (RBM) is to reduce malaria morbidity and mortality by 50% by the year 2010, and still further thereafter until the disease becomes no more a threat to public health. To contribute to the monitoring and evaluation process of this goal, two surveys were carried out in 2000 and 2003 in households and health facilities in the Kassena-Nankana district, northern Ghana using the RBM-WHO/AFRO monitoring and evaluation tools for malaria control activities.

Methods

Data were collected from mothers/caretakers on signs/symptoms of the most recent malaria attack for their under five year old children; the management actions that they took and their perception of health services provided at the health facilities, bednet use, antenatal attendance and place of delivery for the most recent pregnancy, malaria prophylaxis during their last pregnancy. Community health workers and herbalist/traditional healers were also interviewed about the types of health services they provide to community members.

Results

The results revealed a significant improvement in knowledge among mothers/caretakers over the three-year period; this affected caretakers' initial management of illnesses of their young children. The management in terms of the type and dosage of drugs used also improved significantly (p < 0.0001) over the period. Reported insecticide-treated bed net use among children under-five years and pregnant women significantly increased between 2000 and 2003 (p < 0.0001). Health professionals had improved on adoption of their quality of care roles. The intensification of malaria control activities and awareness creation in this district over a three year period had started demonstrating positive results towards reducing malaria disease burden.

Conclusion

Periodic performance assessments through surveys as described and prompt feedback of results to stakeholders in the locality serves as a catalyst to improving malaria control in malaria-endemic countries.     

Disclosure of personal medical information: differences among parents and affected adults for genetic and nongenetic conditions

Protecting the confidentiality of medical information has been an issue of great interest in the fields of bioethics, public policy, and law. Few empirical studies have addressed patient experiences and attitudes toward disclosure of private medical information in multiple contexts such as health insurance, employment, and the family. Furthermore, it is unclear whether differences exist in experiences and attitudes about privacy between those living with a serious medical condition versus those who have a child with a medical condition. The study sought to determine whether attitudes and experiences related to medical privacy and confidentiality differ between affected adults and parents of affected children. Interviews were conducted with 296 adults and parents of children with sickle cell disease (SCD), cystic fibrosis (CF), or diabetes mellitus (DM). This cross-sectional study collected data regarding their experiences, attitudes, and beliefs concerning medical privacy and confidentiality. Multinomial logistic regression analysis was conducted on quantitative data. Qualitative analysis was conducted on data from open-ended response items. Parents disclose their child's diagnosis to others more often than affected adults disclose their own disease status. Parents are less likely than affected adults to regret their disclosure, to hope others do not find out, to have been pressured to share information, and to be asked about their disease by employers. Affected adults express greater concern about disclosure, a greater prevalence and greater fear of discrimination, and experience greater pressure from family members to disclose. Clinicians and researchers working with these populations should consider these differences in privacy and disclosure. Further study is necessary to examine the implications of these differences in attitudes and experiences concerning insurance, employment, and social interactions among persons with these conditions.     

Illness Perception and Clinical Treatment Experiences in Patients with M. Maroteaux-Lamy (Mucopolysaccharidosis Type VI) and a Turkish Migration Background in Germany

Introduction

Mucopolysaccharidosis VI (MPS VI) is an inherited lysosomal storage disease caused by a mutation of the gene for arylsulfatase B (ASB). Of the thirty-one patients registered in Germany, almost fifty percent have a Turkish migration background. MPS VI is treated by enzyme replacement therapy (ERT), which is time-consuming and expensive.

Methods

This interdisciplinary study explored the illness perceptions and clinical treatment experiences among ten MPS VI patients with a Turkish migration background in two centers for metabolic diseases (Berlin and Mainz, Germany). The clinical treatment situation was observed and semi-structured interviews were conducted with patients and health care personnel, in addition to participatory observation in four patients'' everyday environments in Berlin. The data from the interviews, patient records, and personal field notes were encoded, cross-related, and analyzed.

Results

Patients'' acknowledgement of the disease and coping strategies are influenced predominantly by the perception of their individual health status and the handling of the disease within their family. Patients'' willingness to cooperate with treatment strategies is further modified by their knowledge of the disease and the relationships with their health care providers. In this analysis, cultural factors turned out to be marginally relevant.

Conclusion

As with other chronic and debilitating diseases, effective treatment strategies have to reach beyond delivering medication. Health care providers need to strengthen the support for patients with a migration background. In this regard, they should respect the patients'' cultural and social background and their personal perception of the disease and the therapy. Yet structural and social aspects (clinical setting, family and educational background) may be more crucial here than “cultural barriers.”     

Attitude toward genetic testing for cancer risk in Istanbul

To identify attitudes toward genetic testing, and the effects of this information on decisions regarding issues such as pregnancy, abortion, and prophylactic surgery, several subsets of the Turkish population were surveyed in hospital settings. Individuals (n = 179) chosen arbitrarily from four different subsets of a Turkish population were asked to participate in a confidential 23-question survey. Survey participants were familiar with the concept of cancer being a familial disease (85.5%), and 84.7% of them expressed interest in genetic testing to determine cancer risk, 83.9% would have their fetuses tested for such cancer risk, 65.1% would terminate their pregnancies, 92.2% would have their children tested if they were determined to have an increased cancer risk, 71.9% would agree to undergo prophylactic oophorectomy or orchiectomy and 67.6% would have mastectomy/prostatectomy should there be an increased cancer risk to these organs. It appears that at least the sampled segment of a Turkish population is willing to undergo genetic testing to determine if they are at increased risk for cancer. The feasibility and acceptance of genetic testing and the influence of education and genetic counseling in the Turkish people should further be evaluated with a larger stratified sample of the population.     

Parents, ADHD and the internet

The objective of this study is to examine the potential impact of using the internet on medical consultations by analysing the attitudes, attributions, and emotional responses of parents who have been informed by specialists that their child does not have attention-deficit hyperactivity disorder (ADHD) and to examine the nature of the feedback they obtained from members of online internet support groups. Over 40,000 messages from the five most popular international internet forums discussing children with ADHD were analysed. Messages from parents who reported that they had seen at least one specialist (e.g. paediatrician, psychiatrist or psychologist) because of their concerns that their child had ADHD were identified. The children included boys and girls with an age range from 2 to 16?years. Of these, we analysed messages where the parents additionally reported that the specialist had excluded a diagnosis of ADHD. Using these criteria, 91 messages from parents who had consulted over 200 different specialists and 398 replies to these messages were identified for content analysis. The replies to concerned parents were analysed to determine whether they were offered impartial advice. A majority of the parents reported that they did not believe the specialist and were unhappy about their child not being diagnosed with ADHD. They expressed dissatisfaction with the professional's opinions and the implication that their child's conduct was caused by their poor parenting skills. Importantly, 87.6?% of the responses that these parents received, from other members of online forums, reinforced the parent's negative attitude towards the professional's judgement. It was generally suggested that the parents should not believe the expert and should seek a further opinion. The use of the internet may encourage "doctor shopping" and mistrust in health services. Medical professionals and others may need to be aware of this, and parents may need more support than is generally offered to be able to accept alternative explanations for their child's behaviour.     

Non-invasive prenatal diagnosis of single-gene disorders from maternal blood

Prenatal diagnosis (PD) is available for pregnancies at risk of monogenic disorders. However, PD requires the use of invasive obstetric techniques for fetal-sample collection and therefore, involves a risk of fetal loss. Circulating fetal DNA in the maternal bloodstream is being used to perform non-invasive prenatal diagnosis (NIPD). NIPD is a challenging discipline because of the biological features of the maternal blood sample. Maternal blood is an unequal mixture of small (and fragmented) amounts of fetal DNA within a wide background of maternal DNA. For this reason, initial NIPD studies have been based on the analysis of specific paternally inherited fetal tracts not present in the maternal genome so as to ensure their fetal origin. Following this strategy, different NIPD studies have been carried out, such as fetal-sex assessment for pregnancies at risk of X-linked disorders, RhD determination, and analysis of single-gene disorders with a paternal origin. The study of the paternal mutation can be used for fetal diagnosis of dominant disorders or to more accurately assess the risk of an affected child in case of recessive diseases. Huntington's disease, cystic fibrosis, or achondroplasia are some examples of diseases studied using NIPD. New technologies are opening NIPD to the analysis of maternally inherited fetal tracts. NIPD of trisomy 21 is the latest study derived from the use of next-generation sequencing (NGS).     

Bonding or bridging? Professional network organizations of second-generation Turks in the Netherlands and France

ABSTRACT

This article analyses network organizations founded by descendants of Turkish migrants in the Netherlands and France. By surveying members of two such organizations and interviewing several of their board members, we learn how these organizations function, their success in building and extending social networks, and their efficacy at improving labour market prospects for young second-generation professionals of Turkish descent. Our findings reveal a hybrid structure, whereby the organizations gear many of their activities towards mainstream society. In comparison to traditional immigrant organizations, their attitude is more open to other social groups, yet they still have a clear stronghold in the ethnic immigrant community. We conclude that ethnicity is not the main element in the successful second generation’s organizing process. Factors such as educational trajectories, professional ambitions, feelings of responsibility for other members and newly acquired socioeconomic status are the main reasons for this group to organize.     

Ascertainment and Prevention of Genetic Disease

A genetic register system has been developed for the ascertainment and prevention of genetic disease. Its potential value is illustrated with data collected from 478 families with serious genetic disorders which had been seen during the past five years. Of these 249 were referred specifically for genetic counselling, autosomal dominant disorders accounting for the largest group of families with individuals at high risk of becoming affected. Of 717 individuals at high risk of having affected children (or carrier daughters in the case of X-linked recessive disorders), only 101 were referred specifically for counselling. Many were referred only after the birth of an affected child which might otherwise have been prevented. A genetic register system linked to practitioner, hospital, and health department records could be a valuable means of preventing genetic disease.     

Effects of an insect‐mediated mental healthcare program for mentally disordered children

Insects are the most diverse groups of animals on the planet, representing more than one‐half of all known living organisms, and are found in nearly every environment. Recently, the importance of insects as food sources or as pets has increased in many countries, including Korea. In addition, several insects have been shown to exert a strong influence on people's emotions. Our insect‐mediated mental healthcare program is designed to help meet the physical, behavioral and developmental needs of people with mental disorders. Children with mental disorders, the experimental group, were provided with an insect‐mediated mental healthcare program for a total of eight sessions, one session per week, at 1–2 h per session, accompanied by a pre‐test and post‐test. The overall, gender, education level, and mental disease profiles of the participants in this study were balanced. Our results indicated that children who participated in the insect‐mediated healthcare program group once showed significant improvement in their emotional health and insect awareness. Additionally, paired education level's t‐tests showed that the outcomes of the participants in treatment group were significantly improved (α < 0.05). However, participants' satisfaction with their school life (middle school) was not influenced. These results suggest that insects positively influence children's emotional health through an insect‐mediated healthcare program. Further research on the basis of this study is expected to help children with emotional therapy in other areas.     

Trends in Menarcheal Age between 1955 and 2009 in the Netherlands

Aim

To assess and compare the secular trend in age at menarche in Dutch girls (1955–2009) and girls from Turkish and Moroccan descent living in the Netherlands (1997–2009).

Methods

Data on growth and maturation were collected in 20,867 children of Dutch, Turkish and Moroccan descent in 2009 by trained health care professionals. Girls, 9 years and older, of Dutch (n = 2138), Turkish (n = 282), and Moroccan (n = 295) descent were asked whether they had experienced their first period. We compared median menarcheal age in 2009 with data from the previous Dutch Nationwide Growth Studies in 1955, 1965, 1980 and 1997. Age specific body mass index (BMI) z-scores were calculated to assess differences in BMI between pre- and postmenarcheal girls in different age groups.

Results

Median age at menarche in Dutch girls, decreased significantly from 13.66 years in 1955 to 13.15 years in 1997 and 13.05 years in 2009. Compared to Dutch girls there is a larger decrease in median age of menarche in girls of Turkish and Moroccan descent between 1997 and 2009. In Turkish girls age at menarche decreased from 12.80 to 12.50 years and in Moroccan girls from 12.90 to 12.60 years. Thirty-three percent of Turkish girls younger than 12 years start menstruating in primary school. BMI-SDS is significantly higher in postmenarcheal girls than in premenarcheal girls irrespective of age.

Conclusion

There is a continuing secular trend in earlier age at menarche in Dutch girls. An even faster decrease in age at menarche is observed in girls of Turkish and Moroccan descent in the Netherlands.     

Opinions of Youngsters with Congenital Below-Elbow Deficiency,and Those of Their Parents and Professionals Concerning Prosthetic Use and Rehabilitation Treatment

Background

Youngsters with unilateral congenital below-elbow deficiency (UCBED) seem to function well with or without a prosthesis. Reasons for rejecting prostheses have been reported earlier, but unfortunately not those of the children themselves. Furthermore, reasons for acceptance are underexplored in the literature.

Objectives

To investigate opinions of children and early and late adolescents with UCBED, and those of their parents and healthcare professionals, concerning (1) reasons to wear or not to wear prostheses and (2) about rehabilitation care.

Methods

During one week of online focus group interviews, 42 children of 8–12 y/o, early and late adolescents of 13–16 and 17–20 y/o, 17 parents, and 19 healthcare professionals provided their opinions on various topics. This study addresses prosthetic use or non-use of prosthetics and rehabilitation care. Data were analyzed using the framework approach.

Results

Cosmesis was considered to be the prime factor for choosing and wearing a prosthesis, since this was deemed especially useful in avoiding stares from others. Although participants functioned well without prostheses, they agreed that it was an adjuvant in daily-life activities and sports. Weight and limited functionality constituted rejection reasons for a prosthesis. Children and adolescents who had accepted that they were different no longer needed the prosthesis to avoid being stared at. The majority of participants highly valued the peer-to-peer contact provided by the healthcare professionals.

Conclusions

For children and adolescents with UCBED, prostheses appeared particularly important for social integration, but much less so for functionality. Peer-to-peer contact seemed to provide support during the process of achieving social integration and should be embedded in the healthcare process.