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PubMed1979

Nutrition component in a comprehensive child development program. I. The home visitor's role in the prenatal intervention phase.

Nutritional services were integrated in a comprehensive child development program for sixty-eight disadvantaged urban families in an attempt to promote maximum cognitive and psychosocial functioning in their children. Child development trainers made weekly home visits beginning in pregnancy, which combined data gathering, direct nutritional counseling, and early sensory excercises for infants. This paper describes the prenatal home visit program, the training of the home visitors, how the 24-hr. food recall method was adapted for their use, the nature of the home visits, and the complex role of the home visitor. The group whose families participated in the prenatal home visits and were also followed for six months after the infants' birth scored higher on six-month Cattell Scales than did a control group who entered the program at six months of age. There were no stillbirths or neonatal deaths. The incidence of low-birth-weight infants was lower than the national averages. Participation in the program was high.

Child Development↗
PubMedDate not supplied

[Chagas-Mazza disease. Preliminary basic social study].

Chagas-Mazza disease is an endemic infection of chronic evolution and is essentially American. Its transmission by vinchuca in Argentine has created a medical, psychological and social problem of great and important significance. The basic, preliminary and social study carried out in a hospital unit, showed in the population attended, precarious socioenvironmental conditions during childhood and adolescence and the almost total lack of basic information on the disease. Interviews, inquests, questionnaires, group actions, team work, direct dialogues, counselling and guidance groups and the guiding to specialized institutions, constitute a synthesis of the task developed which, in its preliminary stage, showed sufficient reasons to continue the control of health during pregnancy, childbirth, puerperium and lactation.

Argentina↗
PubMed1998

Discharge planning and home follow-up of the elderly patient with heart failure.

Older adults with heart failure have extensive and complex care needs. This article presents a framework for assessment and intervention with this fragile patient group. Comprehensive assessment of elders with heart failure includes gathering information about care, advocacy, and knowledge needs. Nursing interventions are focused on providing direct care, counseling, teaching, and advocacy. The unique role of the advanced practice nurse in discharge planning and home follow-up of elders with heart failure is emphasized.

Aged↗
PubMed1994

Counselling following diagnosis of fetal abnormality: a comparison between German, Portuguese and UK geneticists.

The principle of non-directiveness in genetic counselling is embraced by all relevant professional bodies. Little is known about the extent to which it is endorsed by geneticists, or incorporated into their clinical practice. The aim of the current study is to document how geneticists in three European countries, Germany, Portugal and the UK, report counselling women at risk for having children with a range of conditions. While geneticists in all three countries reported counselling in a largely non-directive style, this varied both across genetic conditions and between countries. German and Portuguese geneticists were significantly more directive than UK geneticists, although they differed in the way in which they were directive. German geneticists were more likely to encourage continuation of pregnancies, while Portuguese geneticists were more likely to encourage termination of affected pregnancies. There was no strong consensus on approaches to counselling for any of the genetic conditions, defined as agreement between 70% of all three groups of geneticists. Despite strong professional codes of non-directiveness, geneticists report being somewhat directive in some counselling situations. Future research needs to focus on what geneticists are trying to achieve in genetic counselling, how they actually counsel, and with what effects.

Abortion, Induced↗
PubMedDate not supplied

The use of formal prior directives among patients with HIV-related diseases.

OBJECTIVE: To examine the knowledge of, counseling about, and use of prior directives among patients with HIV-related disease. DESIGN: Cross-sectional survey with personal interviews that was part of the evaluation of a multi-site AIDS Health Services Program. SETTING: Outpatient clinics and AIDS community-based organizations. PATIENTS/PARTICIPANTS: To be eligible for the survey, subjects had to be at least 18 years of age and enrolled in the AIDS Health Services Program for at least one month. 1,031 clients were interviewed in nine communities. MEASUREMENTS AND MAIN RESULTS: Of those surveyed, 61% had thought a moderate or great amount about naming a proxy for health care decisions. The majority (68%) of the patients knew about prior directives, yet only 35% had been counseled and only 28% had a prior directive. Of those counseled, physicians had counseled only 11% (38/359). Gay/bisexual men were more likely to have been counseled and to have executed a prior directive than were others. Counseling was associated with having obtained a prior directive. Counseled subjects were 3.5 times more likely to have obtained a prior directive than were those not counseled. CONCLUSIONS: A gap exists between subjects' knowledge and implementation of prior directives. To help bridge this gap, the authors recommend that physicians not only attend to the technical aspects of patient care, but also determine patient values concerning life-sustaining therapy and counsel patients on prior directives.

Advance Directives↗
PubMedDate not supplied

In utero diagnosis of congenital infections by direct fetal sampling.

Counseling for infections during pregnancy has traditionally focused on the clinical and laboratory findings of infection in the mother and the estimated risk of fetal damage associated with possible transmission of infection to the child. Now, with the use of techniques for fetal sampling, it is possible to diagnose infections of the fetus in utero and to correlate that information with the occurrence of fetal damage. The techniques that are available for sampling include amniocentesis, cordocentesis and chorionic villus sampling. The laboratory tests include: a) isolation of the organism in appropriate laboratory systems; b) detection of the DNA or RNA of the organism directly or with amplification with techniques such as PCR; c) detection of the organism by fluorescence or in situ hybridization; and d) identification of IgM or IgA fetal antibody to the organism by ELISA or similar methods. In utero infections can be documented for agents such as rubella, cytomegalovirus, parvovirus, Toxoplasma gondii and human immunodeficiency virus type 1. Further information is needed concerning the sensitivities and specificities of these methods for identifying fetal infection and predicting fetal damage.

Amniocentesis↗
PubMed2004

Assessment of genetic testing and related counseling services: current research and future directions.

With the recent completion of the sequencing of the Human Genome, genetic testing will increasingly become available for a greater number of medical conditions, many of which are those that manifest in adulthood (e.g., various cancers, cardiovascular disease, diabetes) or for which little or no treatments are available (e.g., Alzheimer disease). Genetic services, defined here as those relating to genetic testing and counseling, will be with helping more individuals deal with medical information that affects their health directly, as opposed to affecting primarily the health of their offspring. This paper reviews the existing research in the genetic testing and counseling literature and presents an evaluation framework outlining the intended outcomes of genetic services. The purpose of this framework is to provide an overview of the potential outcomes of these services and highlight constructs for future research in this area. In addition, other issues that will affect the assessment of genetic services are raised, using examples from the existing literature. Ultimately, the goal of this paper is to highlight and suggest directions researchers can take to produce the information needed to guide genetic testing and counseling practice. Moreover, as genetic knowledge is increasingly applied towards the prevention and treatment of various common, chronic disease conditions, genetic information will have implications for providers outside of the traditional medical genetics realm, such as primary care providers and public health practitioners. A better understanding of the outcomes of genetic testing and counseling will provide a basis from which to ensure an appropriate application of genetic information by all those who eventually provide care and "genetic" services.

Decision Making↗
PubMed1997

Psychological aspects of genetic counseling. XI. Nondirectiveness revisited.

Directiveness and nondirectiveness are considered here as psychological phenomena and separated from the issue of giving or withholding advice. The former is a form of persuasive communication involving various combinations of deception, coercion, and threat, whereas the latter describes procedures that promote and enhance the autonomy and self-directedness of clients. Examples are given showing that professionals have considerable difficulty dealing with relatively simple, common issues arising in genetic counseling. It is suggested that many, if not most, problems involving the issue of nondirectiveness arise because of inadequacies in applying basic counseling skills. Several examples are given of nondirective counseling in situations involving direct questions and the proffering of "advice." The need to raise standards in counseling training is underscored if the field of genetic counseling is to remain nondirective.

Genetic Counseling↗
PubMed2006

Do students develop better motivational interviewing skills through role-play with standardised patients or with student colleagues?

OBJECTIVE: Smoking is the leading cause of preventable death in the USA and reducing the number of smokers by 50% is among the goals of the Healthy People 2010 initiative. Despite its importance, few medical students receive formal training in smoking cessation counselling. Motivational interviewing is a patient-centred, but directive, method of counselling that has been found to be more effective than giving brief advice for motivating smokers to quit. We wanted to determine whether using standardised patients to teach this skill to Year 3 medical students would be more effective than using student role-plays. METHODS: We conducted a randomised, controlled trial of 93 Year 3 family medicine clerkship students at our medical school between July 2003 and July 2004. The control group (n=46) practised motivational interviewing with one another and the intervention group (n=47) practised with standardised patients trained in motivational interviewing for smoking cessation. At the end of the study all the students conducted an interview with a different standardised patient that was videotaped. The primary outcome was analysis by a trained masked evaluator of the quality of a final videotaped interview using the motivational interviewing treatment integrity code (MITI), which assesses the quality of the interview according to 6 different criteria. RESULTS: There was no significant difference between the control and intervention groups in the final analyses of the interviews. CONCLUSIONS: According to MITI scores, standardised patient role-plays are similar in effectiveness to student role-plays when teaching basic motivational interviewing skills for smoking cessation to Year 3 medical students.

Adult↗
PubMed1990

[The practice of genetic counseling].

The most important practical application of medical genetics is the genetic counselling. It is based on the specific burden of potential offspring which involves severity and treatibility of expected disorder, possibility of prenatal diagnosis, risk, etc. The separation of specific and random burdens is also very important. In Hungary a new counselling method entitled "information guidance counselling" was introduced which means an intermediate position between directive and nondirective counselling because of the expectation of family planners.

Congenital Abnormalities↗
PubMed2004

Content and processes of postpartum counseling after a distressing birth experience: a review.

BACKGROUND: A distressing birth experience can produce debilitating symptoms of psychological trauma; however, little is known about the content and processes of counseling interventions to relieve trauma symptoms. This review identifies and examines common content and processes of postpartum counseling interventions to address trauma symptoms following childbirth. METHOD: A search of major databases (Cinahl 1982-2003; Cochrane 2003; Embase; Proquest; Psychlit; Pubmed/Medline 1966-2003; Sociofile) was conducted, using combinations of the key words of "childbirth,""postpartum,""posttraumatic stress disorder,""anxiety,""trauma,""stress,""debriefing," and "counselling" or "counseling." Identified content and processes were clustered through a thematic analysis. RESULTS: Nineteen publications were retrieved. Counseling strategies provided women with opportunities to talk about their birth experience, express feelings about what happened, have questions answered, address gaps in knowledge or understanding of events, connect the event with emotions and behavior, talk about future pregnancies, and explore existential issues. CONCLUSIONS: Descriptions of postpartum counseling and debriefing are generalized and nonspecific; they provide minimal direction for postpartum counseling models, lack necessary detail for replication, may require psychotherapeutic training and therefore be unsuitable for use by caregivers, and are often based on opinion with little empirical evaluation. Few studies have tested specific counseling interventions on a range of maternal outcomes. Further research is needed to develop counseling models for use by health professionals with women who report a distressing birth experience.

Counseling↗
PubMed1994

Counselling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses.

Women receiving a positive diagnosis of an abnormality during pregnancy may be counselled about a termination by one of several types of health professionals including obstetricians, geneticists, and genetic nurses. There is anecdotal evidence to suggest that these groups differ in both their approaches to counselling and their attitudes towards abnormality. The aim of the current study is to document how genetic nurses, geneticists, and obstetricians describe their own counselling of women following the diagnosis of specific fetal abnormalities. Obstetricians reported counselling in a significantly more directive fashion than did geneticists, who in turn reported counselling in a more directive way than did genetic nurses. The extent to which the groups differed in their reported approaches varied across conditions. The most marked difference was evident for Down's syndrome: 94% of genetic nurses, 57% of geneticists, and 32% of obstetricians reported counselling non-directively. Future research needs to focus on what these different groups see as the objectives of counselling in this situation, how they actually counsel, and with what effects.

Attitude of Health Personnel↗
PubMed2002

Progress of a Comprehensive Familial Cancer Genetic Counseling Program in the Era of BRCA1 and BRCA2.

BRCA1 and BRCA2 mutation carriers have an increased risk of developing breast and/or ovarian cancer. Technical advances in genetic testing have increased the need for genetic counseling services; therefore, we have developed a counseling program for these individuals. The purpose of this study is to characterize this population, assess level of interest in genetic testing, and evaluate our program over a 5-year period. Our Familial Cancer Genetic Counseling Program was established in November, 1994. Information was collected prospectively, with comprehensive evaluation including complete pedigree, risk assessment, and counseling by a genetic counselor, geneticist, and oncologist. Data were collected on risk level, and subsequent recommendations for screening and/or genetic testing. There were 824 contacts recorded from November, 1994, through August, 1999. To date, 162 families have undergone comprehensive genetic evaluation and counseling. 90 (56%) were seen for a concerning family history and 72 (44%) were seen due to a personal history of malignancy. The majority of families had a significant level of risk with 126 (78%) families having two and 70 (43%) families having three affected first-degree relatives. Of the 162 families who received full counseling, 125 (77%) met criteria to recommend BRCA1/BRCA2 genetic testing. At this time, 30 of the 162 (18%) have had genetic testing. A brief phone contact or clinic visit is useful to screen individuals so that counseling can be directed toward truly high-risk families. In our program, the majority of families counseled were eligible for BRCA1/BRCA2 testing, but only 18% have elected to proceed at this time.

Breast Neoplasms↗
PubMed1996

Impact of advance directive videotape on patient comprehension and treatment preferences.

OBJECTIVE: To examine the effects of an advance directive videotape on patient comprehension of advance directive concepts and preferences for resuscitation. DESIGN: Pilot study, randomized cohort trial. SETTING: Extended Care and Rehabilitation Center, Veterans Affairs Medical Center, Durham, NC. PARTICIPANTS: Thirty-six residents of the center; mean age, 69 years. INTERVENTIONS: Sixteen subjects observed an advance directive videotape, and 20 subjects observed a health-relative videotape. All subjects received written material and counseling on advance directives. MEASUREMENT: Structured interviews were conducted at three time points relative to the educational program (pretest, posttest, delayed posttest), measuring comprehension of two advance directive concepts (living will and cardiopulmonary resuscitation) and resuscitation preferences based on hypothetical clinical vignettes. Mean comprehension and mean resuscitation preference scores were derived for each time point. RESULTS: The mean comprehension score improved an average of 1.6 points for all subjects from pretest to delayed posttest (P < .001); however, score changes were not significantly different between the two video groups (P = .39). Mean resuscitation preference scores were stable over time, and there were no significant score differences between the two video groups. CONCLUSION: The advance directive videotape did not significantly affect resuscitation preferences or comprehension of selected advance directive concepts.

Advance Directives↗
PubMed2006

Direct transmission of the 18q- syndrome from mother to daughter.

A 34-year-old mother presented moderate mental retardation, short stature, microcephaly, and characteristic facial dysmorphism. Her 12-year-old daughter manifested moderate mental retardation, short stature, microcephaly, dysplastic external ear canals, hearing impairment, and characteristic facial dysmorphism. Cytogenetic analysis of the family revealed a normal karyotype, 46,XY, in the father, and a 46,XX,del(18)(q22.2) karyotype in both mother and daughter. Molecular marker analysis determined direct transmission of the distal 18q deletion from mother to daughter. The present case provides evidence of fertility of the affected females and a mother-to-daughter direct transmission in the familial 18q- syndrome. Identification of affected females with the 18q- syndrome should include genetic counseling of possible direct transmission and consideration of birth control or prenatal genetic testing at reproductive age.

Abnormalities, Multiple↗
PubMed2003

Threats to "informed" advance directives for the severely physically challenged?

The neuromuscular diseases, such as infantile spinal muscular atrophy, Duchenne's muscular dystrophy, and amyotrophic lateral sclerosis, are widely considered to be terminal illnesses. However, as with many neuromuscular and neurologic diseases, morbidity and mortality are caused by dysfunction of inspiratory, expiratory, and bulbar musculature. This article will discuss how inspiratory and expiratory musculature can be supported by simple, noninvasive means that are rarely considered when, as with the general population, individuals with disabilities are counseled about advance directives. Failure to use noninvasive aids almost invariably results in respiratory failure, intubation, and tracheostomy or death. When noninvasive aids are available, invasive measures referred to in advance directives (eg, intubation) are often needed only temporarily. Yet, ill-informed patients are often advised to refuse intubation and die or to be intubated and left to decide whether to undergo tracheostomy for long-term ventilatory support. Further, despite severe disability, ventilator users with neuromuscular disease report normal life satisfaction. Health care professionals, on the other hand, tend to ignore the patient's life satisfaction and consider quality of life measures not designed for the disabled to justify withholding life-saving interventions. Advance directives, although sometimes appropriate for patients with irretractable pain and advanced cancer, are inappropriate for patients with severe disability because of muscle weakness, and virtually no patients are appropriately counseled about all therapeutic options.

Advance Directives↗
PubMed2004

The impact of population heterogeneity on risk estimation in genetic counseling.

BACKGROUND: Genetic counseling has been an important tool for evaluating and communicating disease susceptibility for decades, and it has been applied to predict risks for a wide class of hereditary disorders. Most diseases are complex in nature and are affected by multiple genes and environmental conditions; it is highly likely that DNA tests alone do not define all the genetic factors responsible for a disease, so that persons classified into the same risk group by DNA testing actually could have different disease susceptibilities. Ignorance of population heterogeneity may lead to biased risk estimates, whereas additional information on population heterogeneity may improve the precision of such estimates. METHODS: Although DNA tests are widely used, few studies have investigated the accuracy of the predicted risks. We examined the impact of population heterogeneity on predicted disease risks by simulation of three different heterogeneity scenarios and studied the precision and accuracy of the risks estimated from a logistic regression model that ignored population heterogeneity. Moreover, we also incorporated information about population heterogeneity into our original model and investigated the resulting improvement in the accuracy of risk estimation. RESULTS: We found that heterogeneity in one or more categories could lead to biased estimates not only in the "contaminated" categories but also in other homogeneous categories. Incorporating information about population heterogeneity into the original model greatly improved the accuracy of risk estimation. CONCLUSIONS: Our findings imply that without thorough knowledge about genetic basis of the disease, risks estimated from DNA tests may be misleading. Caution should be taken when evaluating the predicted risks obtained from genetic counseling. On the other hand, the improved accuracy of risk estimates after incorporating population heterogeneity information into the model did point out a promising direction for genetic counseling, since more and more new techniques are being invented and disease etiology is being better understood.

Bias↗