Mentally retarded children of eastern India: A biosocial study

Abstract

Biosocial characteristics of 265 mentally retarded and 253 nonretarded children comprising 518 handicapped children from eastern India were studied to discern characteristics significantly associated with the retardates. The children studied were consecutive referrals between January 1977 and April 1981 to the Centre for Handicapped Children, Institute of Child Health, Calcutta. Comparison of retarded and nonretarded children showed the incidence of mental retardation to be significantly associated with age of children, age of mothers, parents’ socioeconomic class, family size, birth order, tempo of motor development, and family history of psychiatric illness. The proportion of retardates was higher among the handicapped girls than among boys, and the level of retardation was significantly associated with sex. Implications of findings are discussed.     

Adaptation of children to a chronically ill or mentally handicapped sibling.

The presence of a chronically ill or mentally handicapped child in a family can be a stress for the child''s siblings, who often are ill informed about the nature and prognosis of the illness, may be uncertain what is expected of them in the caregiving role, may feel their own identities threatened, and may experience ostracism by their friends and misunderstanding at school. Although individual reactions vary widely, feelings of anger, guilt, resentment and shame are commonly reported. Excessive responsibility and concern about one''s identity may add to these feelings and culminate in psychologic problems in the sibling. The physician caring for the family must be alert for symptoms of emotional disturbance or social maladjustment among the siblings of chronically ill or mentally handicapped children and should be prepared to counsel the family or refer them to a counsellor experienced in this area. In general, the first step is to be sure that the sibling is fully informed about the condition and to encourage frank discussion between the parents and the handicapped child''s siblings.     

Exeter Project for Handicapped Children

A project in Exeter has tried to increase the contribution of the paediatric department of a district general hospital to the long-term care, support, and treatment of handicapped children and their families. They include an infant care unit, day units for handicapped children, and holiday projects, and are based on close links with the educational and social services. The availability of such a family support unit may diminish the strain on the families of handicapped children and help them to maintain normal family and social relationships.     

EMOTIONAL FACTORS IN PHYSICALLY HANDICAPPED CHILDREN

The staff of the Reiss-Davis Clinic for Child Guidance has been concerned with the emotional factors in physically handicapped or chronically ill children. It is felt by the staff that work with these children must include not only the known procedures to improve or correct their physical condition, but also efforts directed toward preventing or removing any evidence of emotional or psychological crippling.The symbolic or unconscious meaning of the disability is of great importance in this work. Attitudes of the parents may seriously interfere with the handicapped child''s ability to develop his maximum level of functioning and adjustment. Individual and group psychotherapy was found of value in helping these parents.     

Frozen embryos, genetic information and reproductive rights

Recent ethical and legal challenges have arisen concerning the rights of individuals over their IVF embryos, leading to questions about how, when the wishes of parents regarding their embryos conflict, such situations ought to be resolved. A notion commonly invoked in relation to frozen embryo disputes is that of reproductive rights: a right to have (or not to have) children. This has sometimes been interpreted to mean a right to have, or not to have, one's own genetic children. But can such rights legitimately be asserted to give rise to claims over embryos? We examine the question of property in genetic material as applied to gametes and embryos, and whether rights over genetic information extend to grant control over IVF embryos. In particular we consider the purported right not to have one's own genetically related children from a property‐based perspective. We argue that even if we concede that such (property) rights do exist, those rights become limited in scope and application upon engaging in reproduction. We want to show that once an IVF embryo is created for the purpose of reproduction, any right not to have genetically‐related children that may be based in property rights over genetic information is ceded. There is thus no right to prevent one's IVF embryos from being brought to birth on the basis of a right to avoid having one's own genetic children. Although there may be reproductive rights over gametes and embryos, these are not grounded in genetic information.     

Hybrids monosomal for human chromosome 5 reveal the presence of a spinal muscular atrophy (SMA) carrier with two SMN1 copies on one chromosome

We have analyzed the survival motor neuron gene (SMN1) dosage in 100 parents of children with homozygous SMN1 deletions. Of these parents, 96 (96%) demonstrated the expected one-copy SMN1 carrier genotype. However, four parents (4%) were observed to have a normal two-copy SMN1 dosage. The presence of two intact SMN1 genes in the parent of an affected child indicates either the occurrence of a de novo mutation event or a situation in which one chromosome has two copies of SMN1, whereas the other is null. We have separated individual chromosomes from two of these parents with two-copy SMN1 dosage by somatic cell hybridization and have employed a modified quantitative dosage assay to provide direct evidence that one parent is a two-copy/ zero-copy SMN1 carrier, whereas the other parent had an affected child as the result of a de novo mutation. These findings are important for assessing the recurrence risk of parents of children with spinal muscular atrophy and for providing accurate family counseling.     

Parents' experiences discussing pediatric vaccination with healthcare providers: a survey of Canadian naturopathic patients

Background

Parents who choose to selectively vaccinate or avoid vaccination for their children may do so at risk of compromising relations with their family physician or pediatrician. Groups that are associated with reduced rates of pedicatic vaccination, such as parents who access naturopathic care, may be particularly vulnerable to this issue.

Methodology/Principal Findings

In March through September 2010, we administered a 26-item cross-sectional survey to 129 adult patients, all of whom were parents with children ≤16 years of age, presenting for naturopathic care in Ontario, Canada. Ninety-five parents completed the survey (response rate 74%), and only 50.5% (48 of 95) reported that their children had received all recommended vaccines. Most parents (50.5%; 48 of 95) reported feeling pressure to vaccinate from their allopathic physician and, of those who discussed vaccination with their physician, 25.9% (21 of 81) were less comfortable continuing care as a result. Five percent (4 of 81) of respondents were advised by their physician that their children would be refused care if they decided against vaccination. In our adjusted generalized linear model, feeling pressure to vaccinate (odds ratio [OR] = 3.07; 95% confidence interval [CI] = 1.14 to 8.26) or endorsing a naturopathic physician as their most trusted source of information regarding vaccination (OR = 3.57; 95% CI = 1.22 to 10.44) were associated with greater odds of having a partially vaccinated or unvaccinated child. The majority (69.6%; 32 of 46) of parent''s with partially vaccinated or unvaccinated children reported a willingness to re-consider this decision.

Conclusions/Significance

Use of naturopathic care should be explored among parents in order to identify this high-risk group and engage them in discussion regarding pediatric vaccination to encourage evidence-based, shared decision making. Physicians should ensure that discussions regarding vaccination are respectful, even if parents are determined not to vaccinate their children.     

Parental quality of life in the framework of paediatric chronic gastrointestinal disease

Chronic gastrointestinal diseases, such as inflammatory bowel disease (IBD) and celiac disease (CD), might have impact not only on the affected child but also on their parents since inside the family framework, a change in each member may have influence on the whole system. The aim of this study was to test the hypothesis that parents whose children have IBD or CD will have a lower quality of life (QoL) compared to parents of healthy children, as well as that lower QoL will be found among parents who perceive lower health related quality of life (HRQOL) of their child. 55 parents of children with IBD, 49 of CD and 53 parents of healthy children were included in the study. Children were aged 7-18 years. In order to measure parental QoL, a Croatian version of the WHOQOL-BREF questionnaire was administered, with four domains: physical health, psychological health, social relationship and environment. The Total QoL was calculated as a sum of all domain items. The parent-proxy report of children's HRQOL, PedsQL 4.0 Generic Core Scales was used. Main result shows that parents of children with IBD report a significantly lower psychological health, compared to parents of other children, and significantly lower physical health compared to parents of healthy children. Among parents of children with CD and parents of healthy children, better parental Total QoL was significantly correlated with better parental report of children's HRQOL, while for parents of children with IBD those associations were not found. Results of study show association between presence of the disease in offspring with poorer parental QoL, thus highlight the importance of supporting not only children with chronic disease but also involving their parents in psychosocial interventions, as well as supporting the patient's association groups which gather both children with chronic disease and their parents.     

The Educationally Handicapped Child—The Physician's Place in a Program to Overcome Learning Disability

Under California Assembly Bill 464, special classes may be provided by school districts for children designated as educationally handicapped. An educationally handicapped child is not mentally retarded or physically disabled. He may have neurological handicap or emotional disorder, but he must show impaired achievement in relation to his tested abilities.A physician may be asked to participate in the program, either as a specified member of the admissions committee of the school district or to provide a medical clearance for entrance of one of his own patients into the program.He does a thorough history and physical examination but adds special examination of attention, activity, coordination and attitudes.The educationally handicapped child is helped most by the physician who does not reject the idea of educational handicap even if the medical examination is negative; who treats his minor ills; who medicates, when it is indicated, for hyperactivity, distractibility or extreme anxiety; who cooperates with parents and school personnel.     

Family Type and Investment in Education: A Comparison of Genetic and Stepparent Families

Data from the U.S. National Education Longitudinal Survey were examined to investigate postsecondary educational investment in two-parent families. Consistent with hypotheses derived from the logic of inclusive fitness theory, contrasting children with two genetic parents with children from stepparent households on a multivariate composite of investment indicators revealed that stepchildren receive significantly less parental support for pursuit of higher education. Univariate tests on the three measures comprising the multivariate composite indicated that relative to children with two genetic parents, stepchildren have parents who (1) delay the start of savings accounts for postsecondary education, (2) put aside less money for subsidizing the costs of higher education, and (3) expect to allocate fewer economic resources to support the first year of postsecondary schooling. Statistical control of child ability, resource availability, and number of family members sharing in parental resources was accomplished in a second multivariate analysis by using child achievement, familial socioeconomic status, and number of financial dependents in each family as covariates. Statistically equating genetic and stepparent families on these measures reduced, but did not eliminate, the investment differences.     

广西农村留守儿童人格特质特点及其影响因素研究

目的:了解广西农村留守儿童人格特质的特点及其影响因素。方法:运用儿童十四种人格特质问卷(CPQ)对1477名留守儿童和286名非留守儿童进行问卷调查。结果:(1)留守儿童和非留守儿童在大多数人格维度上并不存在显著差异;(2)留守儿童人格特质多维度皆存在显著的性别和年级差异;(3)留守儿童人格特质不同家庭经济状况、父母文化程度、父母与留守儿童的联系频率之间存在显著的差异。结论:"留守"只是一个较远端的环境变量,留守状态并不足以直接导致儿童人格特征的改变;家庭经济状况、父母文化程度、父母与留守儿童的联系频率和性别、年龄皆为影响留守儿童人格特质的重要影响因素。     

Intrafamilial transmission and family-specific spectra of cutaneous betapapillomaviruses

Cutaneous human betapapillomaviruses (beta-HPVs) are widespread in the general population and have been associated with skin cancer. To evaluate the impact of continuous person-to-person contact within families on an individual's beta-HPV type spectrum, we collected serial skin swab samples from parents and children from 10 families. All participants were found to be beta-HPV DNA positive, with 1 to 13 types at study entry (median, 4.0 types). Initial and cumulative (2 to 16 types) HPV type multiplicities varied widely between different families but only a little between family members. The high intrafamilial correlation of HPV multiplicity is already obvious for babies aged 10 days to 10 months. Family members typically displayed similar spectra of HPV types. More than 75% of the HPV types in babies were also detected in their parents. This indicates that HPV transmission mainly results from close contact between family members. Type-specific persistence for at least 9 months was more prevalent in parents (92%) than in children (66%). Of the types detected throughout the study, 24% turned out to persist in the parents and only 11% in the children. Interestingly, about one-half of the HPV types found to persist in one of the parents occurred less frequently or even only sporadically in the spouse. Similarly, only one-third of the persisting parental types also persisted in their children. This indicates that even regular exposure to cutaneous HPV does not necessarily lead to the establishment of a persistent infection, which may point to type-specific susceptibilities of different individuals.     

Survey of parents' attitudes to the recommended Haemophilus influenzae type b vaccine program.

A survey was conducted in a general pediatric practice to determine parents'' attitudes to and compliance with the recommended Haemophilus influenzae type b vaccine program. Of 133 families surveyed 127 (95%) responded to the questionnaire. About one third of the parents did not have their children vaccinated. The decision against vaccination was made despite parent education, follow-up telephone contact and the pediatrician''s expressed support of the vaccine program. Most of the respondents (86%) had no previous knowledge of the vaccine. The factor of greatest concern was the possibility of an adverse reaction. This concern was significantly more common among the parents who decided not to have their children vaccinated than among those who had their children vaccinated (chi 2 = 6.52, p less than 0.025). One third of the parents who indicated that they intended to have their children vaccinated required a telephone reminder. The findings suggest a need for public education about the vaccine, with particular emphasis directed at allaying fears about side effects.     

Moebius sequence: behaviour problems of preschool children and parental stress

This study investigates behaviour problems of preschool children with Moebius sequence, and their primary caregivers' stress. To this end, parents of all preschool children with Moebius sequence known to the German Moebius foundation were anonymously asked to fill out questionnaires, e.g. the Child Behavior Checklist [CBCL] 1.5-5. The primary caregivers of 13/22 children (seven males, six females; mean age: 3;10 [2;1-5;11] years) sent back filled-out questionnaires. Two children were rated as clinical on the CBCL-1.5-5. Boys had significantly higher scores on the scales aggressive behavior and total problems than girls. Compared to the general population, but not to other parents of mentally and / or physically handicapped children, the primary caregivers experienced higher levels of stress. In conclusion, preschool children with Moebius sequence do not show essentially increased rates of clinical behaviour problems. Nevertheless, their primary caregivers experience increased stress and need early and adequate support.     

When to have another baby: A dynamic model of reproductive decision-making and evidence from Gabbra pastoralists

Maximizing reproductive success involves having as many children as possible that can themselves reproduce successfully. Thus, when Gabbra parents decide to have another baby, they must trade off the probability that they will be able to afford to raise the child and marry it off successfully when it reaches maturity against the risk that feeding and raising that child would diminish the family herd, harming the marriage prospects of other children and possibly even leading to household destitution. Here I use a dynamic, state-dependent optimality model to analyze this trade-off. The decision to have another baby depends on household wealth and the number of children they already have. Parents should not necessarily reproduce at the maximum rate to maximize reproductive success, and the costs of marrying off a child have a large impact on the optimal family size. In the Gabbra, the cost of marrying off boys greatly exceeds the cost of marrying off girls. An analysis of demographic data from Gabbra households with a living husband and a first wife that had reached menopause show that probability of remarriage is strongly dependent on the number of children the first wife had. Number of sons has a much greater influence than number of daughters on the probability of a second marriage, as predicted by the model. Men are attempting to create the optimal family.     

Denying biological parenthood: fosterage in Northern Benin

Among the Baatombu in Northern Benin, child fosterage is not an exception in crisis situations, but the common upbringing pattern: until some years ago, most of the Baatombu children did not grow up with their biological parents, but were fostered by social parents. There is a strong attitude of shame related to biological parenthood and an attempt to deny it. Young children are given to paternal or maternal relatives in order to stay with them until their marriage. This involves the transfer of all parental duties and rights to the social parents. Every gesture and practice of demonstrating property rights over one's biological child is therefore a definite breach of norms. Schooling, urbanization, and modernization also trigger off a transformation process. Particularly in the urban context, new forms of social parenthood, such as tutorship and temporary arrangements, have been developed. However, they have clear links to the old frame of ideas and norms.     

Counselling the parents of handicapped children.

The parents of handicapped children have to adjust to a wide variety of emotional and psychological problems when first confronted with the failure of their reproductive expectations. Counselling is a formal procedure or transaction in which both counsellor and parents aim to find a mutually acceptable plan of adjustment. Parents may need support to cope with their own personal inadequacies as well as with their own personal inadequacies as well as with the needs of the child. Counselling should be a continuous process, in which the parents can learn to accept the child as a different rather than a lesser person.     

Surrogate Motherhood and Abortion for Fetal Abnormality

A diagnosis of fetal abnormality presents parents with a difficult – even tragic – moral dilemma. Where this diagnosis is made in the context of surrogate motherhood there is an added difficulty, namely that it is not obvious who should be involved in making decisions about abortion, for the person who would normally have the right to decide – the pregnant woman – does not intend to raise the child. This raises the question: To what extent, if at all, should the intended parents be involved in decision‐making? In commercial surrogacy it is thought that as part of the contractual agreement the intended parents acquire the right to make this decision. By contrast, in altruistic surrogacy the pregnant woman retains the right to make these decisions, but the intended parents are free to decide not to adopt the child. We argue that both these strategies are morally unsound, and that the problems encountered serve to highlight more fundamental defects within the commercial and altruistic models, as well as in the legal and institutional frameworks that support them. We argue in favour of the professional model, which acknowledges the rights and responsibilities of both parties and provides a legal and institutional framework that supports good decision‐making. In particular, the professional model acknowledges the surrogate's right to decide whether to undergo an abortion, and the intended parents' obligation to accept legal custody of the child. While not solving all the problems that arise in surrogacy, the model provides a framework that supports good decision‐making.     

Respite care on a children's ward.

In March 1984 a short term respite care facility for handicapped children was opened in a children''s ward catering primarily for acute medical and surgical problems. The facility was based on a four bedded room designed so that if beds became short in the main ward it could revert immediately to the care of acutely sick children. Three nurses were appointed specifically to staff the facility, the nursing budget for the rest of the ward being reduced proportionately. Conversions were funded by charities and some of the conversion work done by volunteers. The main users were totally dependent children aged under 5 with severe mental and physical handicaps. Parents found the service invaluable, and in addition to planned admissions it was usually possible to accept a child at short notice--for example, when some domestic crisis occurred. Only very rarely was admission impossible because of the needs of acutely ill children. A short term respite care facility not only helps parents cope and may provide beneficial experience for a handicapped child but is also a useful training ground for medical students and junior staff.