Genetic counseling after abnormal prenatal diagnosis: Facilitating coping in families who continue their pregnancies

Families continuing a pregnancy after abnormal prenatal diagnosis face a unique crisis. Case examples are combined with clinical observations and a review of selected literature to define the elements of this crisis. Counseling strategies are discussed that may facilitate coping. Further research is needed to define the experience, as well as to identify effective coping strategies and successful counseling approaches.     

Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities

Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed.     

Sexual abuse intervention: a support group for parents who have a sexually abused child

A pilot program for parents of sexually abused children is discussed with a focus on intervention at a systems level. The Parent Support group is based on an eclectic approach and the interventions at the therapeutic and educational levels are described. The evolution of the group is addressed based on the group objectives. Each of the thirteen sessions is described to illustrate the various intervention strategies. Suggestions for implementing a similar group are discussed based on the authors' experience utilizing the presented model.     

Letter to a genetic counselor

The author describes her personal experience terminating a pregnancy after receiving an abnormal amniocentesis result: While still waiting for the results, she and her husband attempted to deny the importance of the pregnancy, an approach which they subsequently regretted. When they received the abnormal result, they found themselves able to make necessary decisions quickly, despite being in shock. It then took some time before they realized what a major loss they had actually suffered. The painful aftermath included accepting emotional responsibility for their decision to abort, as well as explaining that difficult decision to their older children. Thoughts of a possible subsequent pregnancy could not be faced at once. Over time, the author found the support of friends and colleagues, and even of a support group, to be invaluable. All in all, the entire experience was more painful than she would have predicted, and she hopes that this account will prove helpful both to genetic counselors and to other patients who receive abnormal results from prenatal diagnosis. A list of suggested readings is appended.Rose Green is a pseudonym.     

Managing the death of close others: Evidence of higher valuing of ingroup identity in young adults who have experienced the death of a close other

The death of a close other (DOCO) is perhaps the most difficult experience that people endure. According to terror management theory (TMT), people manage the potentially terrorizing awareness of their mortality by immersing in cultural worldviews that allow them to feel like valuable members of a meaningful universe who may have some existence or trace after death. Although TMT has potential implications for understanding how people cope with DOCO, few studies have examined this possibility. We report results from four studies showing that, in line with TMT, students who experienced DOCO reported stronger valuing of their identification with their in-groups, which in turn was associated with higher levels of self-esteem. These findings shed new light on the social-psychological dynamics of DOCO.     

FNDSB: A fuzzy-neuro decision support system for back pain diagnosis

Back pain is a common pain felt in the back. In the world, it is the fifth common reason for physician visits and in the U.S. about 90% of human adults have back pain at some time in their life. In this paper, we proposed a decision support system for intelligent diagnosis of back pain using a fuzzy-neuro technique to manage the fuzzy concepts. It is also provide an intelligent decision support platform that can assist physicians to diagnose and produce accurate medical advices. The proposed system consists of a user interface that receive symptoms and produce accurate diagnosis with its severity, a fuzzy inference system which contains the strategies of reasoning process based on fuzzification and defuzzification techniques, a fuzzy-neuro system that composed of neural network with fuzzy logic concepts, and a knowledge base which collects of linguistic fuzzy rules. The FNDSB describe knowledge acquisition and representation methods, a way of production linguistic fuzzy rules organization, fuzzification and defuzzification of clinical parameters as input and output values using a Triangular Membership Function (TMF) and Centroid of Area (CoA) techniques respectively. The FNDSB was evaluated using a case study of 10 patients from Al-diwaniyah teaching hospital. According to the evaluation results the system performance around 83.6% efficiency in producing accurate back pain diagnosis.     

Challenges to providing a support group for HIV-positive prisoners in South Africa

In prison populations around the world, the prevalence of HIV is often higher than that of the general population. The prison population is at high risk for HIV infection, particularly through the sharing of contaminated needles and high-risk sexual activity. Counselling is regarded as a key element in the prevention and treatment of HIV infection. Support groups provide essential supportive counselling for HIV-positive individuals struggling to cope. This paper looks at the challenges to providing a support group for HIV-positive prisoners. The author's experience of attempting to provide a support group highlights two key challenges: organisational issues which lead to disruptions for the group; and challenges to ensuring confidentiality, a core ethical principle in HIV counselling.     

"Without being in psychoanalysis I would never have dared to become pregnant": psychoanalytical observations in a multidisciplinary study concerning a woman undergoing prenatal diagnostics

As is well known, Freud described the clinical practice of psychoanalysis as the 'loam' of his cultural-theoretical work, an assessment which is shared by many psychoanalysts up to the present, including the authors of this paper. The complex interplay between unconscious phantasies on the one hand, and the real experiences arising from the new possibilities opened up by prenatal diagnostics on the other, is described with reference to a report of an intensive, long psychoanalysis with an analysand from a family burdened with a genetically transmitted illness (haemophilia). The holding and containing function of the analyst enabled this analysand, despite traumatic experiences with the miscarriage of a healthy child triggered by a prenatal diagnosis and the later abortion of a haemophiliac baby, nevertheless to have the courage to go through another pregnancy and give birth to a healthy girl. The intensive clinical investigation of the unconscious phantasies, conflicts and traumas around the prenatal diagnostics proved to be not only therapeutically fruitful for the analysand, Ms F. It also facilitated insights into those individual chances and risks which appear to be an integral part of the opportunities presented by todays prenatal diagnostics and, through them, it lead to a cultural-critical look at the ambivalence of medical-technical progress. These insights, which are only attainable through psychoanalysis, can represent a distinctive contribution of psychoanalysis to a multi-disciplinary dialogue with medical practitioners, geneticists, ethicists and health policy-makers. By referring to a large EU study on 'Ethical Dilemmas due to Prenatal and Genetic Diagnostics', this paper gives a practical example of such a discussion. Ms F. was psychoanalytically interviewed as part of this study, 16 years after the conclusion of her analysis. The summary of these interviews, which is set against the account of the treatment, offers an impressive insight not only into the long-term effects of a psychoanalysis under very particular personal circumstances, but also into the lasting consequences of decisions made in the context of prenatal diagnostics. Finally, the results of the individual case study are brought together with the clinical outcomes of the EU study, and some considerations are formulated concerning the protective and risk factors facing women during and after prenatal diagnostics. The paper is an appeal to psychoanalysts, with their specific competence in dealing with unconscious phantasies and conflicts and their high level of professionalism in dealing with traumatised patients, to get involved in fresh dialogue with prenatal diagnosticians and their patients.     

Factors predictive of a fetal alcohol spectrum disorder diagnosis: Parent and teacher ratings

Diagnostic assessment in Fetal Alcohol Spectrum Disorder (FASD) is informed by multidisciplinary assessment incorporating objective (i.e., test measures) and subjective means, such as parent and teacher behavior ratings. The purpose of this study was to extend our previous neuropsychological test findings by identifying parent and teacher ratings of academic achievement, attention, executive functioning, and adaptive functioning as predictors of an FASD diagnosis. The charts of 315 children and adolescents with prenatal alcohol exposure (PAE) who underwent assessment for FASD were retrospectively reviewed. Direct logistic regressions analyzed the contribution of different ratings on the likelihood of an FASD diagnosis. The results suggest that a number of rating measures do contribute toward accurately differentiating those with FASD from within a PAE population, including teacher ratings of learning problems, inattention, and adaptive skills. The classification accuracy for each regression was clinically significant (59.1–70.8%). Children with worse ratings on these variables are approximately 1.5 to 2 times more likely to receive an FASD diagnosis. Only teacher ratings (not parent) significantly contributed to whether a diagnosis was made, suggesting that teacher observational rating scales are a critical component of an FASD assessment. Together with our previous research examining neuropsychological evaluation and FASD diagnostic assessment, this study helps to further guide decisions to streamline care in multidisciplinary assessment and intervention planning.     

Continuation of Pregnancy Following the Diagnosis of a Fetal Sex Chromosome Abnormality: A Study of Parents' Counseling Needs and Experiences

Parents who decide to continue a pregnancy diagnosed with a sex chromosome abnormality (SCA) experience a variety of emotions as they deal with complex medical and genetic information. To better understand these individuals' psychosocial, educational, and support needs, 26 parents who received prenatal diagnosis of an SCA after 1989 and who had decided to continue their pregnancy were interviewed by telephone. Twenty (77%) reported they initially had a poor understanding of the predicted syndrome. All parents later met with a genetics professional. Twenty-two (92%) parents considered sterility and underdevelopment of secondary sexual characteristics to be the most negative aspects of SCAs. Contact with other parents of children with SCAs and with support organizations were generally viewed as helpful experiences. Insight gained from this study should be useful for genetic counselors and other health care providers involved with patients who have received abnormal prenatal diagnosis results.     

Developing a model for online support group use,empowering processes and psychosocial outcomes for individuals living with HIV/AIDS

This study examined the mechanism through which online support group (OSG) participation may promote patient empowerment among 340 individuals living with HIV/AIDS. Results from structural equation modelling revealed that greater use of OSGs was associated with more frequent occurrence of the empowering processes as measured by receiving useful information, receiving social support, finding positive meaning and helping others. Receiving useful information and finding positive meaning were related to higher levels of adaptive coping and lower levels of maladaptive coping, while receiving social support and helping others were related to higher levels of self-care self-efficacy, which in turn was related to higher levels of adaptive coping, and lower levels of maladaptive coping. Finally, higher levels of maladaptive coping were related to poorer quality of life, while higher levels of adaptive coping were related to better quality of life. Results suggest that OSG participation may offer some benefits for those living with HIV/AIDS.     

Social support and emotional adjustment during and after a severe life event: A study of wives of myocardial infarction patients

Abstract

This paper examines the relationship between quantitative and qualitative indicators of social support and anxiety. depression and use of health services in a sample of 37 wives of myocardial infarction (MI) patients. In a prospective design, the wives were interviewed during the acute phase of the illness, three months and 10 years post index-MI. Congruent with previous research, the quantitative aspect of social support, defined as number of persons giving help, was unrelated to adjustment, whereas qualitative aspect of social support, defined as the wives' dissatisfaction with social support, was associated with depression and use of health services. The observed association indicated, however, an effect in the opposite direction of the social support model. The findings were unexpected and may be due to a small sample. An alternative explanation is that long-term relationship between depression and social support is more complex, and more long-term studies are needed in this field.     

Genetic counseling for a family with two distinct anomalies: A case report of a neural tube defect and 5p- syndrome in a fetus

A couple presented for genetic counseling because of an elevated maternal serum alpha fetoprotein. Ultrasound examination revealed the presence of a neural tube defect. The couple declined an amniocentesis, but chose serial ultrasound evaluations instead. Ultrasounds eventually identified microcephaly, but the couple continued to decline amniocentesis. After the child's birth, the diagnosis of 5p- syndrome was made. The couple's decision not to have an amniocentesis allowed the family their right to autonomy; however, prenatal chromosome analysis would have provided this couple with a great deal more prognostic information. We discuss the conflict between a counselor's duty to respect a client's freedom vs. duty to care for a client's welfare. We address issues of nondirective counseling and the need for more studies looking at the decision-making process in prenatal diagnosis.     

With a little help from my friends: A computational model for the role of social support in mood regulation

The growing interest in the role of social support in mental and physical health has led to the development of several intelligent systems that aim to use social mechanisms to simulate healthy behaviour. In this paper a computational model of a human agent is presented which describes the effect of social support on mood. According to the literature, social support can either refer to the social resources that individuals perceive to be available or to the support that is actually provided in problematic situations. The proposed model distinguishes between both roles of social support. The role of social network characteristics has been taken into account, as an individual can perceive or receive social support through his/her social network. In addition, the number of connections (friends), strength of ties (relationships), social isolation and social integration have been studied. Simulation experiments have been done to analyze the effect of the different types of support in different scenarios and also to analyze the role of various social network characteristics on the mood level. It is shown that support can help to reduce the induced stress and thus can contribute to healthy mood regulation and prevention of depression. The presented model provides a basis for an intelligent support system for people with mood regulation problems that take the social network of people into account.     

Effectiveness of self-help and support groups for cancer patients: A Review

Abstract

Following the recognition of the psychological difficulties faced by cancer sufferers, there has been a rapid growth in forms of group help. There is a wide variety of types, and nomenclature is far from consistent. Evaluation studies are reviewed, and issues of potential harmfulness are considered.     

'Weaving thoughts' A method for presenting and commenting psychoanalytic case material in a peer group

The authors argue that there are good reasons for seriously considering the dynamics of the peer group when discussing psychoanalytical case material. The setting and procedure have to protect and facilitate for the presenter and the group members to work together. The aim of this paper is to discuss the problems connected with presenting and discussing clinical psychoanalytical material in a peer group and to describe one such specifi c method, which the authors call the 'weaving thoughts' method. The design is primarily inspired by Bion's formulation 'thoughts in search of a thinker'. The group participants refl ect on the presented clinical material in a way that the authors metaphorically describe as creating a weave of thoughts that emerges from the material. The aim of the method is to facilitate a work-group climate that allows thoughts to wander about, and to avert group members from debating and compromising the integrity of its members by letting basic assumptions come into power. The method is described from theoretical and practical points of view, with two illustrations of seminars according to this design and fi nally a discussion of the advantages and drawbacks of the method.     

Emotional support and counselling for people with visual impairment: Quantitative findings from a mixed methods pilot study

Aims: This paper reports on mainly quantitative findings from a mixed methods evaluation of a new model of emotional support and counselling for people with moderate visual impairment. Method: The CORE Outcome Measure was completed with service users at baseline and post‐intervention to assess the impact of the new service on psychological wellbeing and social functioning. Their perceived needs and expectations of the service were also explored. Results: Of the 35 individuals providing data at each assessment time, mean item scores on the CORE fell significantly (p<.001), taking the sample from within a clinical population before therapy, to a mean score below this following therapy. A more positive outlook accompanied this improvement in functioning. Discussion: Findings from the study augment the growing evidence that emotional support and counselling services can play an important role alongside and within related vision services. Implications for practice: The study indicates that therapeutic input for the visually impaired client group may need to target both wellbeing (feelings about oneself and the future) and problems (depression, anxiety, physical health, and trauma). Conclusions: Our findings suggest that a dual model of emotional support and counselling offers considerable benefit for people with visual impairment.     

Skills Evaluator: a multicriteria decision support system for the evaluation of qualifications and skills in Information and Communication Technologies

Employees need to acquire new qualifications throughout their lives in order to deal with the multiple changes in the labour market. This knowledge and competences (formally or non-formally acquired) must be identified and evaluated. For that reason, an integrated approach to the evaluation of Information and Communication Technology knowledge and skills is proposed. The multicriteria method that has been developed refers to professionals who wish to be accredited in a particular specialization through the evaluation of their professional experience, studies and vocational training. The aim of this paper is to present the multicriteria decision support system, Skills Evaluator, which brings into effect the aforementioned method. Copyright © 2007 John Wiley & Sons, Ltd.