Health professionals' reports of information given to parents following the prenatal diagnosis of sex chromosome anomalies and outcomes of pregnancies: a pilot study

OBJECTIVES: To examine the association between the information health professionals report providing parents about sex chromosome anomalies (SCAs) and the outcomes of affected pregnancies. METHODS: Telephone interviews were conducted with health professionals who disclosed the prenatal diagnosis of an SCA to parents. The statements they reported providing to parents about the condition were coded as positive, neutral or negative. Outcomes of the pregnancies were obtained from medical records. RESULTS: Six of the 23 pregnancies were terminated. Health professionals reported giving parents of these six cases a greater amount of negative information about an SCA than did the health professionals reporting on the information given to the parents who continued with their pregnancies. Health professionals reported giving a similar amount of positive and neutral information to both groups of parents. CONCLUSION: The results of this pilot study suggest that there is a positive association between the amount of negative information parents are given initially about a sex chromosome anomaly and the decision to terminate the affected pregnancy. This study is limited by its small sample size and reliance on health professionals' self-reports of information provided to parents. Larger, prospective studies in which consultations are tape-recorded and linked to parents' subsequent decision making and adjustment are needed.     

Shaping Parents: Impact of Contrasting Professional Counseling on Parents' Decision Making for Children with Disorders of Sex Development

IntroductionThe management of disorders or differences of sex development (DSD) remains complex, especially with respect to parents' decision for or against early genitoplasty. Most parents still tend to disfavor postponing surgery until the child is old enough to provide consent.AimTo identify the determinants of parental decisions for or against early sex assignment surgery in DSD children, and in particular to assess the influence of contrasting behavior of health‐care professionals and the information they dispense.MethodsPreliminary data analysis from a focus group identified two broad approaches to counseling information. Two six‐minute counseling videos were produced on this basis: one medicalized, by an endocrinologist, the other demedicalized, by a psychologist. Third‐year medical students (N = 89) were randomized to watch either video as prospective parents and report its impact on their decision in a self‐administered questionnaire.Main Outcome MeasuresStatistical analysis of questionnaire responses regarding decisions for or against surgery, including self‐assessed impact of potential determinants.ResultsThirty‐eight of eighty‐nine “parents” (43%) chose early surgery for “their” child, including 27/41 “parents” (66%) shown the medicalized video vs. 11/48 (23%) shown the demedicalized video (P < 0.001). Desired aims for “their” child also differed significantly depending on the counseling approach viewed. Yet “parents” perceived their personal attitudes on a four‐point Likert scale as the main influence on their decision although their “attitude” was significantly shaped by the video.ConclusionsParental decisions concerning early sex assignment surgery for DSD children depend on the health professional counseling received, to a degree of which neither parents nor professionals appear fully aware. In the absence of conclusive data for or against early surgery, there is a danger of medicalized or demedicalized parentalism resulting in irreversible and inadequately grounded decisions, regardless of the consensus statement of 2005 and the subsequent call for multidisciplinary management. Streuli JC, Vayena E, Cavicchia‐Balmer Y, and Huber J. Shaping parents: Impact of contrasting professional counseling on parents' decision making for children with disorders of sex development. J Sex Med 2013;10:1953–1960.     

When a Baby Dies: Rights of the Baby and Parents

The Rights of Parents When a Baby Dies and Rights of the Baby were developed by the Perinatal Bereavement Team at Women's College in Toronto, Canada. With permission, the National Office of SHARE: Pregnancy and Infant Loss Support, Inc. has revised and expanded these documents for distribution within the United States. The Rights are intended to help caregivers and institutions provide parents with information about their options regarding the death of their baby and allow them time and support for decision making.     

Dying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an ‘in utero ’ diagnosis incompatible with life is made

ObjectiveThe disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of it comes from the United States and little has been generated from Europe. This study aims to illuminate the contemporary treatment associated with such diagnoses, regardless of whether parents decide to terminate or continue the pregnancy.Designa qualitative design was used with data collected by semi-structured interviews and subjected to a thematic analysis.Settingthe research was conducted in the German speaking areas of Switzerland with data collected from participants in places of their choice.Participants61 interviews were conducted with 32 parents and 29 health professionals.Findingsthe theme of ‘temporality’ identified four main time points from the professionals: diagnosis, decision, birth/death, and afterwards. However, in contrast to these, six major themes in this study, primarily generated from parents and extended from receiving the diagnosis until the interview, were identified: shock, choices and dilemmas, taking responsibility, still being pregnant, forming a relationship with the baby, letting go. Although there was concurrence on many aspects of care at the point of contact, parents expressed major issues as gaps between the points of contact.Conclusionscare varied regionally but was as sensitive as possible, attempting to give parents the space to accept their loss but fulfil legal requirements. A gap exists between diagnosis and decision with parents feeling pressured to make decisions regarding continuing or terminating their pregnancies although health professionals’ testimonies indicated otherwise. A major gap manifested following the decision with no palliative care packages offered. During the birth/death of the baby, care was sensitive but another gap manifested following discharge from hospital.     

The Sexuality Education Initiative: a programme involving teenagers,schools, parents and sexual health services in Los Angeles,CA, USA

In response to abstinence-only programmes in the United States that promote myths and misconceptions about sexuality and sexual behaviour, the comprehensive sexuality education community has been sidetracked from improving the sexuality education available in US schools for almost two decades now. Much work is still needed to move beyond fear-based approaches and the one-way communication of information that many programmes still use. Starting in 2008 Planned Parenthood Los Angeles developed and launched a teen-centred sexuality education programme based on critical thinking, human rights, gender equality, and access to health care that is founded on a theory of change that recognises the complex relationship between the individual and broader environment of cultural norms, socio-economic inequalities, health disparities, legal and institutional factors. The Sexuality Education Initiative is comprised of a 12-session classroom sexuality education curriculum for ninth grade students; workshops for parents; a peer advocacy training programme; and access to sexual health services. This paper describes that experience and presents the rights-based framework that was used, which seeks to improve the learning experience of students, strengthen the capacity of schools, teachers and parents to help teenagers manage their sexuality effectively and understand that they have the right to health care, education, protection, dignity and privacy.     

Perception of health status and quality of life of extremely low-birth weight survivors. The consumer, the provider, and the child

In neonatal intensive care, parents make important clinical management decisions in conjunction with health professionals. Little information is available in the literature, however, on whether the preferences of health care professionals, parents, and children differ for the resulting health outcomes. This article compares the preferences of these stakeholders for four to five hypothetical health states that are common to extremely low-birth weight infants. The findings have conceptual and practical implications for decision making in the neonatal intensive care unit.     

Challenges and dilemmas in counselling young women on pregnancy options

This paper is about counselling young women up to 21 years of age who have an unintended pregnancy and need to decide whether to continue the pregnancy, have an abortion or give the baby up for adoption. What is important for a counsellor is to be able to respond appropriately to the issues they raise and support them to make a decision that they feel is right for them. Some young women know what they want to do and only need information to help them put this into effect. Others lean strongly towards one option or the other because it is what others want them to do, or is the opposite of what others want. Still other young women are unable to verbalise their feelings or opinions; they can be easily influenced by others and feel great indecision. During a counselling session, parents sometimes try to influence their daughter to make one decision or another. Some parents feel left out when their daughter will not discuss the pregnancy with them, and some bring up unrelated family problems. Counsellors need to acknowledge their own biases in working with young women, respond in ways that fit a young woman's level of development and acknowledge the difficulties parents sometimes have in coping with and responding to their daughter's situation.     

Newborn Circumcision

Newborn circumcision is the most common surgical procedure in the United States today. The decision to circumcise is deeply rooted in historical, psychosocial, and medical fact and fiction. Many parents are uninformed about the risks of circumcision, think circumcision is required by law, and receive inaccurate or insufficient instruction on the care of the uncircumcised child. Nurses need to present accurate information to parents and to help them sort through beliefs and feelings on circumcision. The nurse then needs to support the parents' decision.     

Expanding contraceptive options for PMTCT clients: a mixed methods implementation study in Cape Town, South Africa

Background

Sexuality and reproductive health are among the most fundamental aspects of life. Poor parental involvement in preparing young people for safe sexual life and good reproductive health was part of the blame for the lack of skills on sexual decision making. Despite the growing needs, there is no adequate health service or counseling specifically suitable for this specific age group and research on the role of parents in this process has yielded inconsistent results.

Objective

The objective of the study is to assess adolescents’ communication on sexual and reproductive health issues with parents and associated factors among secondary and preparatory schools students in Debremarkos town.

Methods

School based study was conducted among secondary and preparatory schools students in Debremarkos town, from April 8 to 21, 2012. Multistage sampling and self administered questionnaires were employed.

Results

The proportion of the students who had discussion on sexual & reproductive health issues with their parent was found to be 254 (36.9%). Mother who able to read and write (AOR?=?2; 95% CI 1.3 to 3.1), adolescents accepting discussion of sexual & reproductive health issues (AOR?=?2.5 95% CI 1.3 to 4.5), adolescents who ever got SRH information (AOR?=?2; 95% CI 1.4 to 2.9), adolescents who ever had sexual intercourse (AOR?=?1.7; 95% CI 1.1 to 2.6) were found to have significant positive associations, and being grade 12 students (AOR?=?0.4; 95% CI 0.2 to 0.7) and having less than three family size (AOR?=?0.5; 95% CI 0.2 to 0.9) showed significant negative associations.

Conclusion and recommendation

Study unveils that parent –adolescent communications on sexual and reproductive health issues is low, only about one third of the students were communicating on SRH issues. Therefore; there is a need to equip and educate parents on different sexual & reproductive health issues. Comprehensive family life education should also be initiated for the students and parents.     

Concilier le diagnostic anténatal et l’incertitude

The antenatal diagnosis is ambiguous.We expect a positive information. The misunderstanding is that parents have always to live with an existential doubt. They project and expect that professional avoid doubt and help them to take rational decision. Professionals only support parents with a conciliation between a rigourous feedback information and the uncertainty. Antenatal diagnosis always deals with uncertainty.     

Prématurité : témoignages et actions des associations de parents

The birth and hospitalization of a preterm newborn is a trauma for families. Parents express feelings of guilt and distress mixed with the joy of birth. The impact of this hospitalization on each of the parents, the couple, and the family can be significant. The presence of parents in neonatal units is a human right. This proximity to their child is also a factor promoting medical and developmental outcome. Parent groups as SOS prema can not only play an important role in supporting parents but also in helping medical teams, training health professionals, adapting care organizations, and promoting social and legislative changes.     

Ethical and legal issues in adolescent pregnancy

A review of the health consequences of adolescent pregnancy indicates that pregnancy in adolescents has a higher mortality rate than that of legal abortions. The rights of minors to give consent to medical care is expressed in the mature minor doctrine and has been extended, with some limitations, to the abortion decision. Efforts to persuade adolescent patients that they should involve their parents in their medical care may be very beneficial; however, when this cannot be achieved, the adolescent should receive confidential medical care, with the adult professional assuming a protective role.     

Parenting after perinatal bereavement - a review of the literature

Abstract

The literature concerning the psychosocial aspects of parenting after the death of a child in the perinatal period is reviewed. The impact of bereavement on the parents and the siblings is discussed with effects on the mental health of the family, the decision to embark on further pregnancies and the implications for child-rearing practice. The concept of the ‘replacement child’ is explored with suggestions as to how psychopathological mechanisms may be avoided.     

Menstruation in young girls: a clinical perspective

The ACOG has recommended that the initial visit to an obstetrician-gynecologist for health guidance, screening, and provision of preventive services should take place around age 13-15. At this visit, clinicians can provide guidance to young girls and their parents on adolescent physical development based on data that define parameters for normal pubertal development, menarche, and menstrual cyclicity, and address menstrual hygiene and emerging adolescent concerns. Adolescent menstrual cycles are initially variable, but this variability does not imply that there are no useful parameters for menstrual cyclicity. Data indicate that cycles typically range from 21 to 45 days, even in the first few gynecologic years. Individuals with cycles that vary widely from this norm may have significant pathology, most commonly hyperandrogenism or polycystic ovary syndrome. Controversy now exists regarding the lower limits for the onset of pubertal development in girls; data suggest that pubertal growth may be occurring earlier than had previously been described. The age of menarche has remained constant. Clinicians can furnish information about menstrual hygiene and menstrual protection and provide parental and teen guidance with printed patient education materials and suggested Web-based sources of information. The provision of anticipatory guidance and information to young girls and their parents can help ease the transition from childhood through puberty and a healthy adolescence.     

Counselling following a diagnosis of congenital heart disease

Counselling the parents following a diagnosis of fetal congenital heart disease (CHD) is as important a task for the fetal cardiologist, as the skill involved in achieving an accurate diagnosis. The counsellor will base prognosis not only on the diagnosis itself but also on the security of diagnosis, the stage in gestation and potential for change, the association with extracardiac malformations and the known results of treatment. Depending on the gestational age and legal situation the counsellor is operating in, termination of pregnancy may be one of the options to consider and one that should always be raised in discussion. Thus, the parents may be in the position of making a crucial decision concerning the management of the pregnancy on the basis of the information received, so it is vital that the counsellor is truly able to communicate with them, whatever be their level of understanding.     

Down syndrome: still a social stigma

Down Syndrome (DS) is a commonly occurring chromosomal abnormality. The incidence increases with advancing maternal age over 35 years. Over the last three decades, tremendous progress has been made in the medical and surgical treatment of these infants. Nationally, a great deal of resources are allocated to DS infants to improve their growth and development. Yet, the perception remains that the DS infant is still not openly accepted by parents and society, as illustrated by the presented cases. This lack of acceptance creates many complex ethical challenges in treating such babies, starting with fetal diagnosis of the disorder in the womb and moving through early stages after the birth of the baby. We argue that health professionals have the responsibility to help make public attitudes more accepting of Down Syndrome. Professionals should encourage social and community involvement of these children. The National Association for Down Syndrome should be contacted periodically to promote activities to enhance public awareness. To the end of greater acceptance, we suggest a ritual at birth that might improve the acceptance of the DS child into the family and the community and hence help improve social attitudes toward Down Syndrome.     

A chill wind blows: Webster, obstetrics, and the health of women

The Supreme Court decision in Webster v Reproductive Health Services permits states to regulate abortion in fashions that may be medically unsound and may significantly restrict access. This decision challenges the contemporary practice of obstetrics and threatens to curtail access to needed services, particularly for poor women, who are at highest risk of pregnancy-associated medical complications and death. Governmental restrictions on abortion interfere with the obstetrician's basic goal of providing optimal care for the patient. Obstetricians dedicated to providing the best care to their patients should help to ensure that safe abortion be part of a spectrum of reproductive health care that is available to all American women.