Attitudes towards carrier testing in minors: a systematic review

The objective of this article is to review the attitudes of the different stakeholders (minors, healthcare professionals, parents and relatives of affected individuals) towards carrier testing in minors. The databases Pubmed, Google Scholar, Psychinfo, Biological Abstracts, Francis, Anthropological Index online, Web of Science, and Sociological Abstracts were searched using key words for the period 1990-2004. Studies were included if they were published in a peer reviewed journal in English and described the attitudes of minors, parents or healthcare professionals towards carrier testing in minors in a family context. The results were presented in a summary form. In total 20 relevant studies were retrieved (2 studies reported the attitudes of two stakeholders). Only one study reported the attitudes of adolescents, two studies reported the attitudes of adults who had undergone carrier testing in childhood. In total six studies have been retrieved discussing the parental attitudes towards carrier testing in their children. Over all studies, most parents showed interest in detecting their children's carrier status and responded they wanted their child tested before the age of majority: some parents even before 12 years. Eight studies were retrieved that reported the attitudes of relatives of affected individuals. Most were in favor of carrier testing before 18 years. The studies retrieved suggest that most parents are interested in the carrier status of their children and want their children to be tested before they reach legal majority (and some even in childhood). This can lead to tensions between parents and healthcare professionals regarding carrier testing in minors. Guidelines of healthcare professionals advise to defer carrier testing on the grounds that children should be able to decide for themselves later in life to request a carrier test or not.     

To show our humanness--relational and communicative competence in pediatric palliative care

The death of a child is perhaps the worst tragedy a family ever has to endure. The communication that occurs among children, parents, and healthcare professionals at the end of a child's life must be grounded in caring, and compassionate relationships. These relationships require particular skills, knowledge and attitudes that are not fully addressed in many approaches to communication training currently available to practitioners. This essay proposes elements of a pedagogy for relational and communicative competence in pediatric palliative care that is rooted in ethical and ethnographic principles.     

Children with 4q-syndrome: the parents' perspective

A questionnaire survey was conducted among the parents of 32 not previously described children with 4q-syndrome, and 4 affected adult relatives. The questions related to the medical condition of the individual child and the interactions between parents and health professionals. The response rate of the survey was 58 %, and the mean age of the patients was 11.2 years. Thirty eight percent of children were diagnosed within the 1st month of life. Most parents felt severely distressed at the time of diagnosis and 66 % complained about a lack of medical information made available to them. However, parental understanding of the genetic aetiology responsible for the 4q-syndrome was overall good. Apart from a multidisciplinary team of healthcare workers, the internet and religion were named as sources of support. In all, 86 % of parents valued the experience of having a child with 4q-syndrome highly despite the difficulties involved.     

Misunderstanding death on a respirator

As Tom Tomlinson's study indicates, there is considerable misunderstanding and confusion among physicians and nurses working in the area. Brain death is often not well-understood by healthcare professionals and hence inadequately explained to relatives, leaving them confused as to whether their loved-one is alive or dead. Whilst these healthcare professionals are using whole-brain death as the criterion of death, they have no clear understanding of the definition of death which underpins the brain-death criterion. Lack of this philosophical rationale makes the use of the brain-death criterion a mere technicality, rather than the expression of a well-grounded conceptual and ethical understanding. The other difficulty is that a brain-dead respirator patient just does not look dead. This appearance of life, Tomlinson suggests, can trigger deep emotions in caregivers and family members which will compound the intellectual perplexity already felt by them.     

Parenting during Ferguson: making sense of white parents’ silence

This paper examines what white, middle-class parents report saying to their children about racial tension and racial protest when events like Michael Brown’s death and the Ferguson protests are the top news stories. The data come from interviews with forty white, middle-class parents in 2014–15. The study results indicate that few parents recalled speaking with their children about racial tension or racial protest even when such discussions were highly visible in the news and on social media. I argue parents’ silence stemmed from a desire to create a protected, worry-free childhood combined with an inability to understand how such subjects related to their white life. However, not all parents were silent. Twelve participants reported speaking with their children about these subjects via a neutral or a defensive colour-blind frame. Only two participants drew attention to issues of power and privilege.     

Attitudes toward Infection Prophylaxis in Pediatric Oncology: A Qualitative Approach

Background

The risks and benefits of infection prophylaxis are uncertain in children with cancer and thus, preferences should be considered in decision making. The purpose of this report was to describe the attitudes of parents, children and healthcare professionals to infection prophylaxis in pediatric oncology.

Methods

The study was completed in three phases: 1) An initial qualitative pilot to identify the main attributes influencing the decision to use infection prophylaxis, which were then incorporated into a discrete choice experiment; 2) A think aloud during the discrete choice experiment in which preferences for infection prophylaxis were elicited quantitatively; and 3) In-depth follow up interviews. Interviews were recorded verbatim and analyzed using an iterative, thematic analysis. Final themes were selected using a consensus approach.

Results

A total of 35 parents, 22 children and 28 healthcare professionals participated. All three groups suggested that the most important factor influencing their decision making was the effect of prophylaxis on reducing the chance of death. Themes of importance to the three groups included antimicrobial resistance, side effects of medications, the financial impact of outpatient prophylaxis and the route and schedule of administration.

Conclusion

Effect of prophylaxis on risk of death was a key factor in decision making. Other identified factors were antimicrobial resistance, side effects of medication, financial impact and administration details. Better understanding of factors driving decision making for infection prophylaxis will help facilitate future implementation of prophylactic regiments.     

Children and the nuclear threat: a child psychiatrist's personal reflections

From the very first stages of life, parents have provided their children with love and protection against harm from within or without, especially from life-threatening situations. Children's perception of death as a unique phenomena develops around age ten and later on, when they begin to grasp the meaning of mortality. This often occurs when they themselves suffer from terminal illness. Children have been the object of destruction, as witnessed by The Holocaust and Hiroshima. The threat of nuclear war poses a new problem for parents, since threatening others is no longer a viable solution to the conflict. In addition, adults manifest a massive denial that the destruction of mankind can take place at any time. This denial, like a family secret, prevents children from asking questions and expressing to their parents their fears about their own and mankind's destruction. Examples are given of how children do express their concerns and fears about the nuclear threat when they are allowed to express themselves. Unless this denial is replaced by open communication about the seriousness of the situation, children and adolescents will view the adults' denial as numbness and folly and as responsible for the world's destruction. A meaningful dialogue between parents and children about the threat is given as the solution to the family conflict.     

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.     

Parental attitudes toward pediatric organ donation: a survey.

We conducted a telephone survey of parents in the National Capital Region to assess their intention to donate their child''s organs and to provide physicians with information that could help alleviate their concerns about approaching parents for consent. Of 339 parents who agreed to answer questions after being given details of their child''s "death" 288 (85%) said that they would be willing to donate their child''s organs. The degree of willingness was associated with the certainty of death, altruism and empathy toward children in need of an organ, previous discussion of organ donation with a family member and knowledge of an adolescent or adult child''s attitude toward donation. Factors that inhibited the intention to donate included uncertainty of death, insufficient information from medical professionals and fear of multilation. The child''s age was not significantly associated with intention to donate. Concordance between the results and actual donation rates in Canada and the United States supports the generalizability of the survey findings.     

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.     

Qualitative interview study of communication between parents and children about maternal breast cancer

Objective To examine parents'' communication with their children about the diagnosis and initial treatment of breast cancer in the mother. Design Qualitative interview study within a cross-sectional cohort. Setting Two breast cancer treatment centers. Participants 32 women with stage I or stage II breast cancer with 56 school-aged children. Main outcome measures Semistructured interview regarding timing and extent of communication with children about the diagnosis and initial treatment of the mother''s illness, reasons for talking to children or withholding information, and help available and requested from health professionals. Results Women were most likely to begin talking to their children after their diagnosis had been confirmed by biopsy, but a few waited until after surgery or said nothing at all. Family discussion did not necessarily include mention of cancer. There was considerable consistency in the reasons given for either discussing or not discussing the diagnosis. The most common reason for not communicating was to avoid children''s questions, particularly those about death. Although most women had helpful discussion with a physician concerning their illness, few were offered help with talking to their children; many would have liked help, particularly the opportunity for both parents to talk to a health professional with experience in understanding and talking to children. Conclusion Parents diagnosed with cancer or other serious illnesses should be offered help to think about whether, what, and how to tell their children and about what children can understand, especially as they may well be struggling themselves to come to terms with their illness.     

Mixed feelings of children and adolescents with unilateral congenital below elbow deficiency: an online focus group study

The existing literature is inconsistent about the psychosocial functioning of children and adolescents with Unilateral Congenital Below Elbow Deficiency (UCBED). The objective of this qualitative study was to explore the psychosocial functioning of children and adolescents with UCBED in terms of their feelings about the deficiency and what helps them to cope with those feelings. Additionally, the perspectives of prosthesis wearers and non-wearers were compared, as were the perspectives of children, adolescents, parents and health professionals. Online focus group interviews were carried out with 42 children and adolescents (aged 8-12, 13-16 and 17-20), 16 parents and 19 health professionals. Questions were asked about psychosocial functioning, activities, participation, prosthetic use or non-use, and rehabilitation care. This study concerned remarks about psychosocial functioning. Children and adolescents with UCBED had mixed feelings about their deficiency. Both negative and positive feelings were often felt simultaneously and mainly depended on the way people in the children's environment reacted to the deficiency. People staring affected the children negatively, while support from others helped them to cope with the deficiency. Wearing a prosthesis and peer-to-peer contact were also helpful. Non-wearers tended to be more resilient than prosthesis wearers. Wearers wore their prosthesis for cosmetic reasons and to prevent them from negative reactions from the environment. We recommend that rehabilitation teams make parents aware of their great influence on the psychosocial functioning of their child with UCBED, to adjust or extend the currently available psychosocial help, and to encourage peer-to-peer contact.     

Eugenics and Mandatory Informed Prenatal Genetic Testing: A Unique Perspective from China

The application of genetic technologies in China, especially in the area of prenatal genetic testing, is rapidly increasing in China. In the wealthy regions of China, prenatal genetic testing is already very widely adopted. We argue that the government should actively promote prenatal genetic testing to the poor areas of the country. In fact, the government should prioritize resources first to make prenatal genetic testing a standard routine care with an opt‐out model in these area. Healthcare professions would be required to inform pregnant women about the availability of genetic testing and provide free testing on a routine basis unless the parents choose not to do so. We argue that this proposal will allow parents to make a more informed decision about their reproductive choices. Secondarily, this proposal will attract more healthcare professionals and other healthcare resources to improve the healthcare infrastructures in the less‐developed regions of the country. This will help to reduce the inequity of accessing healthcare services between in different regions of China. We further argue that this policy proposal is not practicing eugenics.     

Discrete Choice Experiment to Evaluate Factors That Influence Preferences for Antibiotic Prophylaxis in Pediatric Oncology

Background

Bacterial and fungal infections in pediatric oncology patients cause morbidity and mortality. The clinical utility of antimicrobial prophylaxis in children is uncertain and the personal utility of these agents is disputed. Objectives were to use a discrete choice experiment to: (1) describe the importance of attributes to parents and healthcare providers when deciding between use and non-use of antibacterial and antifungal prophylaxis; and (2) estimate willingness-to-pay for prophylactic strategies.

Methods

Attributes were chances of infection, death and side effects, route of administration and cost of pharmacotherapy. Respondents were randomized to a discrete choice experiment outlining hypothetical treatment options to prevent antibacterial or antifungal infections. Each respondent was presented 16 choice tasks and was asked to choose between two unlabeled treatment options and an opt-out alternative (no prophylaxis).

Results

102 parents and 60 healthcare providers participated. For the antibacterial discrete choice experiment, frequency of administration was significantly associated with utility for parents but not for healthcare providers. Increasing chances of infection, death, side effects and cost were all significantly associated with decreased utility for parents and healthcare providers in both the antibacterial and antifungal discrete choice experiment. Parental willingness-to-pay was higher than healthcare providers for both strategies.

Conclusion

Chances of infection, death, side effects and costs were all significantly associated with utility. Parents have higher willingness-to-pay for these strategies compared with healthcare providers. This knowledge can help to develop prophylaxis programs.     

Confronting Death in Legal Disputes About Treatment-Limitation in Children

Most legal analyses of selective nontreatment of seriously ill children centre on the question of whether it is in a child’s best interests to be kept alive in the face of extreme suffering and/or an intolerable quality of life. Courts have resisted any direct confrontation with the question of whether the child’s death is in his or her best interests. Nevertheless, representations of death may have an important role to play in this field of jurisprudence. The prevailing philosophy is to configure death as a release from a futile or painful existence and/or as a dignified end in an objectively hopeless situation. However, there can be disagreement about the meaning of death in these settings. Some parents object that death would be premature or that it represents a culpable neglect of their child. A closer examination of these discordant interpretations allows for a better comprehension of the cultural understandings that underscore clinical and legal accounts of death following end-of-life decisions.     

Effects of parental public health insurance eligibility on parent and child health outcomes

Many states expanded their Medicaid programs to low-income adults under the Affordable Care Act (ACA). These expansions increased Medicaid coverage among low-income parents and their children. Whether these improvements in coverage and healthcare use lead to better health outcomes for parents and their children remains unanswered. We used longitudinal data on a large, nationally representative cohort of elementary-aged children from low-income households from 2010 to 2016. Using a difference-in-differences approach in state Medicaid policy decisions, we estimated the effect of the ACA Medicaid expansions on parent and child health. We found that parents’ self-reported health status improved significantly post-expansion in states that expanded Medicaid through the ACA by 4 percentage points (p < 0.05), a 4.7% improvement. We found no significant changes in children’s use of routine doctor visits or parents’ assessment of their children’s health status. We observed modest decreases in children’s body mass index (BMI) of about 2% (p < 0.05), especially for girls.     

Metasynthesis of Youth Suicidal Behaviours: Perspectives of Youth,Parents, and Health Care Professionals

BackgroundYouth suicide is a major public health issue throughout the world. Numerous theoretical models have been proposed to improve our understanding of suicidal behaviours, but medical science has struggled to integrate all the complex aspects of this question. The aim of this review is to synthesise the views of suicidal adolescents and young adults, their parents, and their healthcare professionals on the topics of suicidal behaviour and management of those who have attempted suicide, in order to propose new pathways of care, closer to the issues and expectations of each group.ConclusionThe violence of the message of a suicidal act and the fears associated with death lead to incomprehension and interfere with the capacity for empathy of both family members and professionals. The issue in treatment is to be able to witness this violence so that the patient feels understood and heard, and thus to limit recurrences.     

Managing Fever in Children: A National Survey of Parents' Knowledge and Practices in France

Introduction

Identifying targets to improve parental practices for managing fever in children is the first step to reducing the overloaded healthcare system related to this common symptom. We aimed to study parents'' knowledge and practices and their determinants in managing fever symptoms in children in France as compared with current recommendations.

Methods

We conducted an observational national study between 2007 and 2008 of French general practitioners, primary care pediatricians and pharmacists. These healthcare professionals (HPs) were asked to include 5 consecutive patients from 1 month to 12 years old with fever for up to 48 hr who were accompanied by a family member. Parents completed a questionnaire about their knowledge of fever in children and their attitudes about the current fever episode. We used a multilevel logistic regression model to assess the joint effects of patient- and HP-level variables.

Results

In all, 1,534 HPs (participation rate 13%) included 6,596 children. Parental concordance with current recommendations for temperature measurement methods, the threshold for defining fever, and physical (oral hydration, undressing, room temperature) and drug treatment was 89%, 61%, 15%, and 23%, respectively. Multivariate multi-level analyses revealed a significant HP effect. In general, high concordance with recommendations was associated with high educational level of parents and the HP consulted being a pediatrician.

Conclusions

In France, parents'' knowledge and practices related to managing fever symptoms in children frequently differ from recommendations. Targeted health education interventions are needed to effectively manage fever symptoms in children.     

Your child is dead.

OBJECTIVE--To determine parent''s views on how death of their children should have been handled. DESIGN--Retrospective questionnaire survey of parents who had experienced death of their child. SETTING--Charitable organisation of bereaved parents. SUBJECTS--150 bereaved parents, all members of the organisation, of whom 120 (80%) participated voluntarily in the study. MAIN OUTCOME MEASURES--Child''s age; date and cause of death; details of person breaking the news and handling of the interview; time parents spent with dead child, their attitude to requests for organ donation, and follow up support received. RESULTS--122 children''s deaths were described; the largest single group was due to road traffic accidents, 16 were suicides, and eight were murders. Twice as many interviews were rated as sympathetically or reasonably handled as badly or offensively handled (68 v 34). The interview ratings depended on the sensitivity and personal skills of the interviewers rather than on their previous contact or professional position; police were rated as more sympathetic than doctors and nurses. Of 109 respondents, 81 had seen their child''s body, 44 of whom thought that sufficient time had been denied. Of the 28 parents who did not see the body, 17 subsequently stated their regret. In 82 parents organ donation had not been discussed. Only 16 parents recorded any follow up support from hospital staff and very few support at the time. CONCLUSIONS--The consistency of the responses suggests a serious need to revise the in service training and education of the police and health professionals in their approach to informing of death; organ donation should be discussed sensitively and parents allowed time with their dead child with fewer restrictions.     

Facemask use by children during infectious disease outbreaks

An overview of available literature on the use of protective facemasks by children for protection from respiratory infectious agents reveals relatively few articles dealing specifically with the topic, despite their use during recent outbreaks (eg, severe acute respiratory syndrome, pandemic influenza). Little is known about the physiological and psychological burdens imposed by these devices and a child's ability to correctly use and tolerate them. This article focuses on the myriad issues associated with protective facemask use by children in the hope of educating public health personnel, healthcare professionals, and families on their limitations and associated risks, and in the hope of fostering much-needed research.