Health-care providers' views on pursuing reproductive benefit through newborn screening: the case of sickle cell disorders

Newborn screening (NBS) programs aim to identify affected infants before the onset of treatable disorders. Historically, benefits to the family and society were considered secondary to this clinical benefit; yet, recent discourse defending expanded NBS has argued that screening can in part be justified by secondary benefits, such as learning reproductive risk information to support family planning ('reproductive benefit'). Despite increased attention to these secondary benefits of NBS, stakeholders' values remain unknown. We report a mixed methods study that included an examination of providers' views toward the pursuit of reproductive risk information through NBS, using sickle cell disorder carrier status as an example. We surveyed a stratified random sample of 1615 providers in Ontario, and interviewed 42 providers across 7 disciplines. A majority endorsed the identification of reproductive risks as a goal of NBS (74-77%). Providers' dominant rationale was that knowledge of carrier status is an important and inherent benefit of NBS as it allows people to make reproductive choices, which is consistent with the goals of disease prevention. However, some challenged its appropriateness, questioning its logic, timing and impact on disease prevention. Others were sensitive to intruding on individuals' choices or children's independent rights. While the dominant view is consistent with discourse defending expanded NBS, it deviates from the traditional screening principles that underpin most public health interventions. Broader discussion of the balance between benefits to screened individuals and those to families and societies, in the context of public health programs, is needed.     

Latina mothers' help seeking at a school-based mutual support group

Low-income Latino parents constitute a vulnerable population who are underserved by traditional mental health services but difficult to recruit to more culturally sensitive community interventions. In order to identify factors that may facilitate participation, a cognitive-motivational framework was employed to study help seeking at a school-based mutual support group (MSG) for low-income Latino parents. Phone interview data from 75 Latina mothers generally supported hypothesized differences between nonattenders and at tenders. Specifically, attenders initially reported (a) greater parenting stress, (b) less confidence in parenting abilities but comparable psychological coping resources, (c) less satisfaction with and greater need for social support, (d) less negative attitudes toward help seeking, and (e) more previous school involvement. A discriminant analysis revealed that need for parenting advice and prior school involvement accounted for 34% of the variance between attenders and nonattenders. Implications for enhancing program utilization are discussed.     

A professional partnership with genetic support groups

Voluntary, lay genetic support groups have become important providers of supportive, educational, and social services for clients and families who face genetic disorders. A survey of 88 persons representing genetic support groups confirms that these organizations are providing their members with information and assistance about not only the genetic aspects of the disorders but also problems of daily living. Respondents noted that professionals frequently refer patients to their groups and that many of the groups have professionals working directly with them as guest lecturers, consultants, and advisory board members. At least 20% cited a lack of genetic counseling services for members of their groups as a serious problem and called for greater sensitivity to emotional concerns in the timing and delivery of genetic counseling by professionals. Respondents called for greater collaboration between the voluntary organizations and professionals but underscored the unique benefits of empathy and support from one's peers.     

Burnout and collegial support in state psychiatric hospital staff

To determine the correlates of burnout, 47 employees of a state psychiatric hospital completed measures of burnout, collegia! support, prolonged anxiety, physical health, and job attitude. Results showed that burnout was associated positively with anxiety, frequency of illness, and contrary job attitudes, and correlated negatively with level of satisfaction with the collegial support network. Partial correlations showed that satisfaction with support systems diminished the effects of burnout on frequency of illness and job attitudes. Tests for divergent validity showed that these findings were specific to burnout and not other measures of job satisfaction or fulfillment. The results suggest that facilitating staff satisfaction with colleagues may reduce burnout and some of its deleterious effects.     

Social networks and support in long-term psychiatric patients.

This paper describes quantitative and qualitative aspects of social support in a sample of 40 long-term schizophrenic day patients attending a rehabilitation unit. The influence of symptomatology and experience of life stressors on network and support characteristics was also investigated. The primary networks of these patients were found to be small, comprising on average 7 members, of whom only 3 were seen regularly. Despite this, subjects rated their perceived support as adequate. The secondary networks were of the order of 32. It emerged that greater prevalence of negative symptoms was significantly associated with lower ideal levels of support and this group of patients was significantly less likely to seek support in the event of a life stressor. This may be a protective mechanism to insulate the person from the effects of stressful relationships but at the same time means that they are isolated from potential supports. The clinical implications are discussed in terms of offering optimum support for this marginalized group.     

Family-doctor support for patients on a psychiatric case register

The family-doctor consultations of 76 patients on a psychiatric case register and 76 matched controls were examined. During a two-year period the psychiatric patients consulted just over twice as often as the controls (p < 0·001). Contact with the psychiatric services did not reduce the psychiatric patients' demand for general-practitioner time.     

Women and AIDS Support Network: mutual support to change community norms

A group of women formed the Women and AIDS Support Network (WASN) in Zimbabwe in June 1989 to improve women;s self-esteem and confidence and to bring about changes in attitudes and reactions toward AIDS-related problems. Both HIV-positive and HIV-negative women are WASN members. Women have limited control over sexual relationships. Women who know their partners are having intercourse with other women have few options, e.g., they may depend on their partners. A family council settles marital disagreements, but husbands do not always cooperate. Increased peer pressure could change societal acceptance of male infidelity to positive attitudes toward friendship and partnership in marriage. Therefore, WASN explores sexual relationships, especially control and power in them. These discussions should lead to affirmation of positive behavior. For example, men can promote condom use and monogamy to their male peers. They can also talk to their partners and their sons about HIV. Rural women should not blame urban women for their partner's HIV status. WASN also targets schoolgirls. Most early and some current messages of AIDS campaigns reinforces the dichotomy of good and bad women, supported by an earlier link between urban women and sexually transmitted diseases. Yet, they ignored men's role in HIV transmission. WASN speaks out against such negative images, e.g., dramas that depict the HIV-infected woman as evil and the innocent as good while the man worries about which woman infected him instead of feeling awful about infecting other women. WASN also addressee AIDS-related discrimination on the job and stigmatization issues. It now is conducting 2 research projects: information needs of urban and rural women and capacities of family support systems to assist HIV-positive women.     

Comparing support to breast cancer patients from online communities and face-to-face support groups

Objective

To compare support for three groups by considering usage patterns with regard to two peer support resources, online communities, and face-to-face support groups, among patients with breast cancer in Japan.

Methods

We conducted a cross-sectional survey of 1039 breast cancer patients.

Results

Factor analysis indicated that all groups show the five aspects of support: “Emotional support/Helper therapy,” “Emotional expression,” “Conflict,” “Advice,” and “Insight/Universality.” Within the group using two support resources, the support scores of “Emotional expression” and “Advice” were higher for the online community, and those of “Emotional support/Helper therapy,” and “Insight/Universality” were higher for the face-to-face support group. Among the three groups, the members who received the most peer support were those who used both an online community and a face-to-face support group.

Conclusion

Patients who received the most social support from peers were in the group using both online communities and face-to-face support groups.

Practice implications

Healthcare providers should provide information about peer support through not only traditional face-to-face support groups but also online communities.     

Underrepresentation of African Americans in online cancer support groups

The Internet is increasingly important for many cancer survivors because it provides access to the latest information on cancer treatments and also allows them to receive support by participating in online cancer support groups. Unfortunately, little is known about why African-American cancer survivors are underrepresented in online cancer support groups. This article reviews the relevant literature and discusses three possible explanations for why African Americans are underrepresented in online cancer support groups: the digital divide/digital inequality, preferences for face-to-face support or culture-specific online support, and trust concerns. We conclude that a health inequity exists with regard to the utilization of information that can be obtained from online cancer support groups. However, with regard to the potential benefits of the psychosocial and emotional support aspect of online cancer support groups, a health inequity may not exist, as African Americans have other preferred avenues for obtaining needed support, and there is no evidence that this is detrimental to their health.     

Verbal and performance IQ for discrimination among psychiatric diagnostic groups.

WAIS Verbal and Performance IQ scores were obtained from medical records of 500 psychiatric inpatients recently admitted to a large university hospital. With a subsample of the original 500 patients for whom there was diagnostic agreement between two independent clinicians, a multivariate analysis of variance was carried out to determine the extent to which the Verbal and Performance scores discriminated among eight diagnostic categories into which patients were classified. In the multivariate ANOVA, statistical techniques were employed to control for concomitant background variation that otherwise might have been confounded with true diagnostic group differences in Verbal and Performance IQ. Although mentally retarded and organic brain syndrome patients could be distinguished significantly from other diagnostic groups on the basis of their lower total IQ scores, the data did not support the persistent clinical belief that functional psychiatric disorders differed in the WAIS measurement space.