Ethics of refusing parental requests to withhold or withdraw treatment from their premature baby

In the United Kingdom women have access to termination of pregnancy for maternal reasons until 24 weeks' completed gestation, but it is accepted practice for children born at or beyond 25 weeks' gestation to be treated according to the child's perceived best interests even if this is not in accordance with parental wishes. The authors present a case drawn from clinical practice which highlights the discomfort that parents may feel about such an abrupt change in their rights over their child, and argue that parents should have greater autonomy over treatment decisions regarding their prematurely born children.     

小学生家长亲职教育技能现况及需求评估

目的：了解小学生家长亲职教育技能的现况及需求,并对其影响因素进行探索。方法：采用多阶段分层整群随机抽样的方法,对山西省某市1 394名城乡小学生家长进行一般人口学特征、亲职教育技能（parenting scale）、亲职教育需求评估、亲子互动态度问卷（parent-to-child interaction attitudes）、社会支持度、童年期受虐经历等方面的横断面调查。结果：目前小学生家长亲职教育技能的获取途径,除“电视/电影/广播”外, 农村家长对其余各种途径的利用率均低于城市家长,城乡家长对亲职教育有较高的需求度。家长童年期躯体/情感虐待经历是亲职教育技能的危险因素,家长的积极亲子互动态度和高社会支持度是亲职教育技能的保护因素。母亲、男孩家长、家庭经济状况一般/较差、对亲子互动态度积极的家长,其亲职技能需求度更大。结论：应充分利用大众传媒、人际传播等方式满足家长,尤其是农村家长对亲职教育的需求;亲职教育应将童年期有虐待经历、低社会支持度、消极亲子互动态度的家长作为重点干预人群。     

Multicultural medical encounters: the experience at a pediatric clinic

Research evidence suggests that minority patients experience disparities in health care management. This study examines how cultural and language expectations affect the perceived interaction between physicians and Hispanic patients. Seventeen physicians and thirteen Hispanic parents were interviewed at Arkansas Children's Hospital's General Pediatric Clinic. It was found that parents have a positive perception of physicians and reported being satisfied with the quality of the encounter. In addition, both physicians and parents reported issues that should be addressed. Both groups felt that a physician's perceptions, along with language barriers, might affect that physician's ability to fully interact with patients, but not their decision-making regarding treatment.     

Meckel Gruber syndrome--a single gene cause of recurrent neural tube defects

Meckel Gruber syndrome (MGS), an autosomal recessive disorder characterised by posterior encephalocoele, multicystic kidneys and post-axial polydactyly should be recognised by obstetricians and paediatricians to counsel parents regarding the 25% recurrence risk. We report a consanguineous family with MGS affecting three infants.     

Wheeze in childhood: is the spacer good enough?

Max was treated with SABA using an MDI and spacer with facemask and responded well to the initial treatment. You explained to the parents that nebulisers are neither required nor recommended in the treatment of wheezing in their child’s situation. You advised the parents on the proper technique of MDI use with spacer and facemask, as well as care of the equipment. You also gave them a clearly written action plan regarding the efficient management of the next episode of wheeze with MDI and spacer. You further explained the side effects of oral bronchodilators and nebulisers, and why you refrained from using them. Max was given a follow-up appointment to assess his progress, and his parents were advised on the situations when they should go to a doctor or the emergency department.     

Pathways to services for children with cerebral palsy in Selangor and the Federal Territory, Kuala Lumpur

Cerebral Palsy (CP) describes a group of chronic conditions affecting body movement and muscle coordination caused by damage to one or more areas of the brain, occurring at any time during foetal development to infancy. This research was carried out to learn how parents of children with cerebral palsy (CP) had found and accessed services provided for them in Selangor and Kuala Lumpur. It was based in the Spastic Children's Association of Selangor and Federal Territory (SCAS&FT) among 96 of 201 parents of children who use the facilities and services provided by the SCAS&FT through questionnaires and face-to-face interviews. There was a satisfactory level of availability and accessibility of contacting and using the services provided by SCAS&FT in terms of respondent satisfaction. However, parents had varying levels of awareness of the different classes and activities carried out by the school. Efforts to improve knowledge regarding the services available for children with CP in the general population and among parents of these children should be promoted.     

中小学生及其家长对受艾滋病影响儿童态度及影响因素分析

目的:了解中小学生及其家长对受艾滋病影响儿童的态度,并分析其影响因素.方法:采用分层整群抽样方法的横断面调查研究,抽取小学、初中、高中学生及其家长为研究对象进行问卷调查,调查内容包括学生及其家长的基本情况、艾滋病相关知识及对受艾滋病影响儿童态度,采用t检验和方差分析及多水平模型分析数据.结果:共回收学生及家长有效调查问...     

Proceduralisation, choice and parental reflections on decisions to accept newborn bloodspot screening

Newborn screening is the programme through which newborn babies are screened for a variety of conditions shortly after birth. Programmes such as this are individually oriented but resemble traditional public health programmes because they are targeted at large groups of the population and they are offered as preventive interventions to a population considered healthy. As such, an ethical tension exists between the goals of promoting the high uptake of supposedly 'effective' population-oriented programmes and the goal of promoting genuinely informed decision-making. There is, however, a lack of understanding with regard to how parents experience the tension between promoting uptake and facilitating informed choice. This paper addresses this issue, and data are presented to show how aspects of the timing, presentation of information and procedural routinisation of newborn screening serves to impact on the decisions made by parents.     

A case study of a new technique for the primary percutaneous endoscopic realignment of a complete urethral injury

The male urethra is vulnerable to injury with multisystem trauma, especially those that include pelvic fractures. Controversy exists regarding the optimal time to repair urethral injuries and different modalities exist for the treatment. We report the first documented case of percutaneous endoscopic realignment of a urethra using a previous cystostomy site that has been dilated using a balloon dilator.     

First-aid management of minor burns in children: a prospective study of children presenting to the Children's Hospital at Westmead,Sydney

OBJECTIVE: To identify the adequacy of first aid care following minor burns in children. DESIGN: Prospective case series. SETTING: Emergency Department and Acute Wound Clinic, the Children's Hospital at Westmead (CHW), Sydney. PARTICIPANTS: 109 children who presented with minor burns (10% body surface area or less) to CHW over the five months from 2 November 1998 to 23 March 1999. MAIN OUTCOME MEASURES: Comparison of the adequacy of first aid delivered by parents and carers, general practitioners, local hospitals, and CHW. RESULTS: Burns included scalds, contact, flame, chemical or electrical burns. Adequate initial first aid had been given by parents or carers in only 24 of 109 cases (22%). The 85 children who presented to medical care after inadequate initial first aid was given by parents or carers included 14 of 14 (100%) who had presented to their general practitioner (GP), 22 of 31 (71%) who had presented to their local hospital, 22 of 38 (58%) who had presented to CHW, and 2 of 2 (100%) who had had first contact with other health professionals. CONCLUSIONS: This study shows that there is a need to educate parents and health professionals regarding appropriate first aid for burns.     

Parental procreative obligation and the categorisation of disease: the case of cystic fibrosis

The advent of prenatal genetic diagnosis has sparked debates among ethicists and philosophers regarding parental responsibility towards potential offspring. Some have attempted to place moral obligations on parents to not bring about children with certain diseases in order to prevent harm to such children. There has been no rigorous evaluation of cystic fibrosis in this context. This paper will demonstrate cystic fibrosis to have unique properties that make it difficult to categorize among other diseases with the goal of promulgating a reproductive rule. Once this is established, it will be demonstrated that procreative rules that appeal to future health are inadequate in the era of advancing genetic knowledge. Utilising a specification of Joel Feinberg's 'open future' concept outlined by Matteo Mameli, it will offer an analysis of parental obligation that does not constrain parents of potential children with cystic fibrosis with a moral obligation not to bring them about.     

Anorectal melanoma

Four cases of anorectal melanoma are presented. The authors believe that this is the first report of the occurrence of this tumour in Malays. Advanced disease at initial presentation accounts for the poor prognosis observed in this series. Surgery remains the principal treatment modality, although controversy exists regarding optimal extent of resection.     

儿科用药失误防范

目的：给患儿提供更安全、更有效的医疗服务。方法：通过两组数据对儿科患者院前用药失误现象进行分析。结果：使卫生管理部门、基层医护人员、患儿家长等各个层面对院前用药失误现象有所认识、了解,引起重视,加强管理,提高水平。结论：儿科患者院前用药失误现象确实存在,近年来其发生率呈现下降趋势。     

Our right to in vitro fertilisation--its scope and limits

There exists a derived negative right to procreative freedom, including a right to in vitro fertilisation (IVF) and to the exercise of selective techniques such as preimplantation genetic diagnosis. This is an extensive freedom, including not only the right to the exercise of a responsible parenthood, but also, in rare cases, to wrong decisions. It includes also a right for less than perfect parents to the use of IVF, and for IVF doctors to assist them, if they want and can agree about the terms.     

Physicians as healthcare surrogate for terminally ill children

The parents of some terminally ill children have reported that being asked to authorise removal of life-sustaining measures is akin to being requested to sign a "death warrant". This dilemma leaves families not only enduring the grief of losing a loved one, but also with feelings of ambivalence, anxiety and guilt. A straightforward method by which the parents of terminally ill children can entrust the role of healthcare surrogate to the treating physician is presented. The cornerstone of this paradigm is parental awareness that the physician will act in the child's best interest, even if that means discontinuing life-sustaining measures. The goal is to mitigate parental guilt and fear of misperception, by self and others, of having given up on their child. From a moral standpoint this concept is an appealing option as it conforms to the four basic principles of medical ethics. While laws in the USA and several European nations prevent members of the medical team from taking on the responsibilities of healthcare surrogate for terminally ill patients, formal and informal precedence for this option already exists in France, The Netherlands, Norway, Sweden, Switzerland, and the Canadian province of Manitoba.     

Perceptions of a mental health questionnaire: the ethics of using population-based controls

Mental health surveys are used extensively in epidemiological research worldwide. The ethical questions that arise regarding their risk of causing psychological distress or other potential harm have not been studied in the general population. We have investigated how study participants serving as controls in a population-based study perceived an anonymous postal questionnaire focusing on mental health and wellbeing. Parents were contacted from the Swedish Census Bureau as part of a larger follow-up study on palliative care conducted in 2001. Eligible parents had a child of the same gender, year of birth and were from the same counties in Sweden as parents who had lost a child to cancer. Five percent reported being negatively affected. The principle negative effect on participants was that self-reflection reminded them of their difficulties. Of the 418 respondents, 52% reported that they were positively affected by study participation and 95% perceived the inquiry as valuable. These findings support the use of population-based controls in future research.     

The risk of road traffic accidents among primary school children in Kuala Terengganu

A case control study was conducted in 1996 among primary school student in Terengganu. The objective of the study is to determine the relationship between road traffic accidents and factors such as socio-economic status, distance from school, number of siblings, behavioural problems, knowledge and attitudes of pupil and their parents towards road safety and parents' educational status. A total of 140 cases was obtained from 3 urban schools and 3 from rural schools. Cases were matched with control according to age sex and locality of residence. There were significant associations between road traffic accidents and pupils' knowledge regarding road crossing (OR = 0.40, 95% CI = 0.19-0.85), parental supervision (OR = 0.43, 95% CI = 0.19, 0.64) and parents having driving licences (OR = 0.99, 95% CI = 0.856-0.999). Road safety education for pupils and parental supervision are key measures in preventing road traffic accidents among primary school children.     

Incidence of Heart Disease in Children in the City of Toronto

A special registry of children with heart disease in the City of Toronto was set up (a) to provide for follow-up of all children with heart disease in that community, (b) to remove the “cardiac” label from children with functional murmurs, (c) to acquaint parents with facilities available for the management of children with heart disease, and (d) to record useful data regarding heart disease in children.     

Trust versus concerns—how parents reason when they accept HPV vaccination for their young daughter

Abstract

Background. From spring of 2012, human papillomavirus (HPV) vaccine against cervical cancer is offered free of charge to all girls aged 10–12 years through a school-based vaccination programme in Sweden. The aim of this study was to explore how parents reason when they accept HPV vaccination for their young daughter and also their views on HPV-related information.

Methods. Individual interviews with parents (n = 27) of 11–12-year-old girls. The interviews were recorded, transcribed verbatim, and analysed using thematic content analysis.

Results. Three themes emerged through the analysis: Trust versus concern, Responsibility to protect against severe disease, and Information about HPV and HPV vaccination is important. The parents expressed trust in recommendations from authorities and thought it was convenient with school-based vaccination. They believed that cervical cancer was a severe disease and felt a responsibility to protect their daughter from it. Some had certain concerns regarding side effects and vaccine safety, and wished for a dialogue with the school nurse to bridge the information gaps.

Conclusions. Trust in the recommendations from authorities and a wish to protect their daughter from a severe disease outweighed concerns about side effects. A school-based vaccination programme is convenient for parents, and the school nurse has an important role in bridging information gaps. The findings from this qualitative study cannot be generalized; however, it can provide a better understanding of how parents might reason when they accept the HPV vaccination for their daughter.     

Beliefs of young people and their parents about the harmfulness of alcohol, cannabis and tobacco for mental disorders

OBJECTIVE: To ascertain the beliefs of young people and their parents about the role of alcohol, tobacco and marijuana in the prevention and treatment of mental disorders. DESIGN, SETTING AND PARTICIPANTS: Between May and August 2006, a national computer-assisted telephone survey was conducted on a representative sample of Australian youths aged 12-25 years. 3746 young people and 2005 of their parents were presented with a case vignette portraying psychosis, depression, depression with alcohol misuse, or social phobia in a young person. MAIN OUTCOME MEASURES: Participants' beliefs regarding the role of substance use in preventing or dealing with mental disorders in young people. RESULTS: Over 85% of participants agreed that alcohol, tobacco and marijuana were harmful for the young people in the vignettes, and over 80% of youths agreed that not using marijuana or drinking alcohol in excess would reduce the risk of developing a similar problem. CONCLUSION: Young people and their parents are fully aware of the negative impact of substance use on mental disorders. Translating this knowledge into behavioural change will be a major challenge for future public health campaigns.