Do Socialization Goals Explain Differences in Parental Control Between Black and White Parents?

African American and White parents differ in their use of parental control strategies. This study examined the degree to which these differences are related to socialization goals or socioeconomic factors. Using a sample of 320 parents, the authors found that socialization goals for child independence, cultural connection and respect for elders (i.e., cultural‐filial piety), and financial success explained most of the ethnic differences in parental strictness. Ethnic differences in autonomy granting were more related to economic factors. It was concluded that African American parents scoring higher on measures of strictness than White parents is related to having different socialization goals and cultural beliefs about child obedience and respect for elders. However, African American parents seem to provide less autonomy than White parents, perhaps due to sociocontextual factors such as greater neighborhood dangers.     

Parental notice and consent for abortion: out of step with family law principles and policies

In 1990, the US Supreme Court in Hodgson v. Minnesota allowed a state to require, with limited exceptions, notification of both parents before a woman under 18 has an abortion, as long as the law provides a judicial bypass procedure. If the judge finds that she is mature enough to give informed consent or that notification is not in her best interest, judicial bypass permits nondisclosure to the parents. The notification requirement is contrary to many of the general principles to family law. The Minnesota statute requires physicians to notify both parents; notice to merely one parent is permissible only if the other parent is dead or cannot be located after a "reasonably diligent effort." Without the judicial bypass procedure Justice O'Connor would have invalidated the statute as unconstitutional, for conflicting with the best interests of the minor, infringing on family autonomy, and failing to foster the state's alleged goal of improving parent-child communication. We are left with a ruling that fails to protect the privacy of family decision making from government interference, fails to uphold court-ordered custody and parental decision making arrangements, fails to recognize state laws allowing minors access to medical services relating to sexual activity, and conflicts with the general rule of requiring only 1 parents' consent before a minor receives medical treatment. The parental notification law can cause serious harm, precipitating a dangerous family crisis where physical, psychological, or sexual abuse is present, and can cause delay in pursuing and abortion until it is too late to get one, causing life-long repercussions. The best interests of minors strongly argue against mandatory parental consent and notification laws.     

A careful course of action in a conflict regarding useful treatment of a newborn infant with severe brain damage

In a newborn female infant, it was concluded that severe perinatal asphyxia had caused such extensive cerebral damage that further medical treatment was useless. Based on their religious beliefs, the parents disagreed, despite the fact that the requested second opinions supported the conclusion of the medical staff. Since the parents persisted, a period of inurement was agreed upon during which reanimation would be performed if necessary. After several months, there was no change in the attitude of the parents towards the policy not to reanimate, even though it was clear that there was no improvement whatsoever in the patient's neurological status, while everyone agreed that she showed signs of increased suffering. The decision regarding the determination of a situation in which further medical treatment was useless was re-evaluated carefully. In a legal procedure started by the parents, the judge supported the decision of the attending physicians. In order to prevent the parents from taking their child home, in which case a situation could arise in which she would be deprived of adequate sedation or analgesia, which the attending physicians were obliged to provide, the Dutch Child Protection Council was consulted and the parents were deprived of their parental authority. Ultimately, the patient died suddenly due to respiratory and circulatory arrest without another situation in which reanimation might have been indicated.     

Problems and hopes perceived by mothers,fathers and physicians of children receiving palliative care

Background

The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child.

Objective

(i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left ‘hopeless’.

Method

Seventy‐one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians.

Results

The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65–66%) and hope domains (59–63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively).

Conclusion

Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.     

Deciding Together? Best Interests and Shared Decision-Making in Paediatric Intensive Care

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances.     

Patient decision making competence: outlines of a conceptual analysis

In order to protect patients against medical paternalism, patients have been granted the right to respect of their autonomy. This right is operationalized first and foremost through the phenomenon of informed consent. If the patient withholds consent, medical treatment, including life-saving treatment, may not be provided. However, there is one proviso: The patient must be competent to realize his autonomy and reach a decision about his own care that reflects that autonomy. Since one of the most important patient rights hinges on the patient's competence, it is crucially important that patient decision making incompetence is clearly defined and can be diagnosed with the greatest possible degree of sensitivity and, even more important, specificity. Unfortunately, the reality is quite different. There is little consensus in the scientific literature and even less among clinicians and in the law as to what competence exactly means, let alone how it can be diagnosed reliably. And yet, patients are deemed incompetent on a daily basis, losing the right to respect of their autonomy. In this article, we set out to fill that hiatus by beginning at the very beginning, the literal meaning of the term competence. We suggest a generic definition of competence and derive four necessary conditions of competence. We then transpose this definition to the health care context and discuss patient decision making competence. This revised version was published online in July 2006 with corrections to the Cover Date.     

Informed consent and assent in human subject research.

Informed consent is an important aspect of human subject research, designed to uphold individual autonomy and the moral principle of respect for persons. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research articulates three distinct elements of informed consent as "information, comprehension, and voluntariness." These elements are discussed as they apply to informed consent. This article then discusses the concept of child assent. Finally, informed consent as it applies to public health research is discussed.     

Parental consent for neuroimaging in paediatric research

Background Functional magnetic resonance imaging (fMRI) is increasingly applied in paediatric research. Parents typically provide research consent for their children; yet, no study has examined the rates of consent, nor factors influencing parental decision making for consent. The present study aimed to determine the proportion of parents that would consent to their child undergoing an fMRI study, and to elicit the reasons, motivators and detractors affecting their decision. Methods Ninety parents of children aged 6 years were invited to participate in a postal survey study. Results Fifty‐three parents (59%) responded and one‐third (34%, 18/53) reported that they would consent. The main reason for consent was that participation could benefit children in the future (89%, 16/18). Common reasons for not consenting included that fMRI may be anxiety‐provoking (54%), or was an unnecessary medical procedure (23%). Conclusions Our preliminary data suggest that researchers may have to approach three times the number of participants required in order to recruit a suitable number of healthy children to fMRI studies. Further research examining the influence of recruitment approaches (e.g. phone vs. postal) and the various factors influencing decision making regarding consent is required. For example, careful examination of the language used in describing the procedure could facilitate parental understanding about fMRI and alleviate anxiety associated with the procedure. This is an important consideration for recruitment to future fMRI studies given that anxiety was a key factor influencing parental non‐consent.     

Impact of Parental Involvement in Life-Support Decisions: A Qualitative Analysis of Parents' Adjustment Following Their Critically Ill Child's Death

A retrospective, qualitative, preliminary study examined if parental involvement in a life-support withdrawal (LSW) decision impacts the perceptions and adjustment of parents whose child died in a pediatric critical care unit. Participants were parents whose child died following an LSW decision (11 mothers, 7 fathers) and parents whose child died without an LSW decision (5 mothers, 4 fathers). At 6 to12 months after their child's death, the two groups of parents were interviewed and asked to reexamine their perceptions of the following categories: understanding of child's medical condition, staff communication, support, and feelings of closure. Content analysis of the interview data indicated that in comparison to parents whose child died without an LSW decision, a significantly greater number of parents whose child died following an LSW decision were certain about their child's future health; believed that their child's quality of life would have been unacceptable; and reported less dissatisfaction with time spent with their child, fewer negative changes in family functioning, and more positive changes in feelings toward staff.     

The role of maturity in adolescent decision-making around HPV vaccination in France

Mothers are often responsible for vaccination decisions in the household. However, their confidence in certain vaccines such as Human Papillomavirus (HPV) vaccines is eroding in some countries. France is one of the countries with the lowest HPV vaccine uptake in Europe, with parents delaying or refusing the vaccine for their adolescent daughters due to safety- and effectiveness-related concerns. Although parental consent is required for vaccination, adolescents’ involvement in HPV vaccination decision-making could improve vaccine uptake, with self-consent procedures already introduced in some countries. Adolescents’ capacity to engage in decision-making is influenced by their maturity and autonomy in health. This study explored the role of maturity in decision-making around HPV vaccination in France through qualitative interviews with adolescent girls (n = 24) and their mothers (n = 21) and two focus groups with adolescent girls (n = 12). A codebook approach to thematic analysis revealed that adolescent girls’ involvement in HPV decision-making is a process that evolved with maturity. As adolescents progressed towards maturity at different speeds, some expressed childlike traits such as impulsive decisions and others described more rational, reflective decision-making. Despite these differences, most adolescents in this study described a passive role in HPV vaccination decision-making, following their parents’ lead. However, their expressed desire for information and involvement in discussions indicates that their lack of engagement may not only be due to a lack of maturity but also a result of mothers and doctors excluding them from getting involved. Furthermore, as health behaviours are shaped during adolescence, the influence of vaccine hesitant mothers on their daughters’ own views and beliefs could be significant, together with exposure to regular controversies in the mainstream media. Individualised approaches to engage adolescents in decision-making around their own health are needed, for example through strengthening discussions and information around HPV vaccination with parents and doctors.     

Decision-making about HPV vaccination in parents of boys and girls: A population-based survey in England and Wales

BackgroundSchool-based HPV vaccination in the UK will soon be extended to boys. Based on other countries’ experience, uptake may initially be lower in boys than girls. We assessed HPV vaccine attitudes and decision-making in parents of boys and girls, to explore sex differences and inform public health messages.MethodsWe carried out a cross-sectional population-based survey using home-based interviews in spring 2019. Participants were adults in England and Wales, with a child in school years 5–7 (aged 9–12 and eligible for HPV vaccination within 3 years). Measures included awareness of HPV and the vaccine, demographic factors, previous vaccine refusal and (after exposure to brief information) whether participants would allow their child to have the HPV vaccine (decided to vaccinate; decided not to vaccinate; undecided). We also assessed vaccine attitudes. Data were weighted to adjust for non-response. Multinomial logistic regression was used to explore predictors of deciding to (or not to) vaccinate compared with being undecided.ResultsAmong 1049 parents (weighted n = 1156), 55% were aware of HPV and the girls’ vaccination programme, but only 23% had heard of plans to vaccinate boys. After information exposure, 62% said they would vaccinate their child, 10% would not, and 28% were undecided. Parents of girls were more willing to vaccinate than parents of boys (adjusted odds ratio: 1.80 (1.32–2.45)). Positive attitudes and HPV/vaccine awareness were significantly independently associated with deciding to vaccinate. Previous vaccine refusal for a child was the strongest predictor of not wanting the HPV vaccine.ConclusionsOur findings suggest a need for public health campaigns to raise awareness of plans to extend HPV vaccination to boys. Reassuringly only 10% of all parents were unwilling to vaccinate and our data suggest further information, including about safety and efficacy, may be important in supporting undecided parents to make the decision to vaccinate.     

The 'health culture' of families as an influence on the use of surgery for glue ear: a case-control study

The influence of elements of a family's health culture (its health beliefs, attitudes and behaviour) on the decision for children to undergo surgery for glue ear was investigated by means of a case-control study. One hundred and forty-two children who had undergone such surgery were compared with the same number of children from their school class. Data derived from a structured questionnaire administered to the parents in their own homes revealed that the families were similar with regard to most biosocial factors. However, there were clear differences in the labelling of middle ear disease. Children in case families were more likely to be diagnosed as suffering from glue ear rather than recurrent acute otitis media, particularly if an older sibling of the same sex had previously been so diagnosed (for boys RR 6.68; for girls RR 4.55). This influence of the family's health culture was supported by the findings that parents tended to view their children as having presented more developmental problems; and to be more conscious themselves of health promoting activities. Further studies employing different methodologies are required to confirm these findings.     

Chinese seniors' perspectives on end-of-life decisions.

Making end-of-life decisions is a painful and difficult process; one that can be intensified by cultural differences between physicians and their patients. The objective of this study was to examine attitudes of Chinese seniors towards end-of-life decisions. We conducted a qualitative survey in a Chinese community centre in Toronto, Canada. Face-to-face interviews, in Cantonese, were conducted with 40 Chinese seniors 65 years of age or older. Respondents based their end-of-life decision making on the following factors: hope, suffering and burden, the future, emotional harmony, the life cycle, respect for doctors, and the family. Respondents rejected advance directives. Respondents' attitudes toward end-of-life decision making can be understood through the lens of values from Confucianist, Buddhist and Taoist traditions. Health care workers can best achieve quality end-of-life care--and address the cultural differences that may arise--by focusing primarily on understanding the perspectives of patients and their families, and by continually striving for balanced and open communication at all stages of the caregiving process.     

Autism,intellectual disability,and a challenge to our understanding of proxy consent

This paper focuses on a hypothetical case that represents an intervention request familiar to those who work with individuals with intellectual disability. Stacy has autism and moderate intellectual disability. Her parents have requested treatment for her hand flapping. Stacy is not competent to make her own treatment decisions; proxy consent is required. There are three primary justifications for proxy consent: the right to an open future, substituted judgment, and the best interest standard. The right to an open future justifies proxy consent on the assumption of future autonomy whereas substituted judgment justifies proxy consent via reference to past autonomy. Neither applies. Stacy has not been, nor will she be, competent to make her own treatment decisions. The best interest standard justifies proxy consent on the grounds of beneficence. It is unlikely that hand flapping harms Stacy. None of the three primary means of justifying proxy consent apply to Stacy’s case.     

The role familiarity with science and medicine plays in parents' decision making about enrolling a child in vaccine research

Parental consent to children's participation in vaccine research has resulted in the licensure of essential vaccines. Recruitment to this type of research is typically difficult, however, and many parents decline. In this study, the authors interviewed parents about their decision for or against enrolling their child in a vaccine study. The data analysis suggests that parents' ability to evaluate a vaccine study depends on how attuned they are with science and medicine, either professionally or as consumers of health services. Familiarity does not predispose parents to enrolling their child in research; rather, it is a predictor of parents' confidence in their decision making. Many parents were motivated by altruism and trust, which, if uninformed, can leave the parents prone to exploitation. It is vital to ensure that parents are confident in their judgment of a study and its potential benefit to their child and society.     

Informed consent: ideal or reality?

Is it ever possible to give informed consent to treatment or research? Are the standards of consent set by ethicists and lawyers too high for ordinary people to reach? Should these standards be abandoned or modified? These questions are discussed in this paper mainly in relation to the extensive literature on consent in medicine, with examples about consent to children's treatment and research which raise extra dilemmas. Paradoxical meanings are considered: consent as an informed correct choice or a courageous best guess, and autonomy as isolated, uncompromised freedom or reasonably uncoerced self-realisation. Beyond being informed, consent involves evaluating, making and signifying a decision. It is better understood as a process than an event, in which reasoned understandings can be complemented by emotional insights. Ethical and legal standards of voluntary consent, although partly an unrealistic ideal, provide important guidelines for people who request and give consent to research.     

It takes two: the effect of child characteristics on U.S. parents’ motivations for allowing electronic media use

Extant research on parents’ choices for child media consumption focuses exclusively on parental beliefs and motives along with demographic variables. However, given parental choices are made within the context of the parent–child relationship, this study investigates how perceived child characteristics influence parents’ motives for allowing their children to consume screen media. One hundred and fifty-one parents of children between 6 months and 6 years of age were surveyed regarding their beliefs and motives for using screen media for their child as well as their perceptions of their child’s temperaments as energetic or detached. Results revealed a child’s energetic temperament predicted parental media use motives beyond that of parental media beliefs in ways consistent with expected relational management goals. These results extend the uses and gratifications perspective by supporting the idea that media choices made within a relational context are best understood by considering both members within the relational dynamic.     

Parents of elementary school students weigh in on height, weight, and body mass index screening at school

School-based body mass index (BMI) screening and parent notification programs have been recommended as a childhood overweight prevention strategy. However, there are little empirical data available to guide decision making about the acceptability and safety of programs. A pilot study was conducted using a quasiexperimental research design. In fall 2004, children in 4 suburban elementary schools (kindergarten to sixth grade) in the St Paul/Minneapolis, MN, metropolitan area completed height/weight screening. The following spring, parents in 2 schools received letters containing height/weight and BMI results. A self-administered post-only survey examined parents' opinions and beliefs regarding school-based BMI screening and parent notification programs (response rate: 790/1133 = 70%). The chi2 test of significance was used to examine differences in program support by treatment condition, child's weight status, and sociodemographic characteristics. Among all parents, 78% believed it was important for schools to assess student's height/weight annually and wanted to receive height, weight, and BMI information yearly. Among parents receiving the letter, 95% read most/all of the letter. Most parents (80%) and children (83%) reported comfort with the information in the letter. Parents of overweight children were more likely to report parental discomfort as well as child discomfort with letter content. There was considerable parental support for school-based BMI screening and parent notification programs. Programs may be a useful overweight prevention tool for children. However, continued attention to how best to support parents and children affected by overweight is required.