A Spanish-language prenatal family health evaluation questionnaire: Construction and pilot implementation

The Family Planning Council of America has constructed and implemented a genetic history questionnaire, the Family Health Evaluation, to elicit risk factors, to increase clients' knowledge about reproductive choices, and to improve access to genetic services. The objective of the present study was to develop and implement a Spanish-language version of the Family Health Evaluation for data collection and risk assessment. The content of the Family Health Evaluation was modified to more clearly reflect the risks, exposures, and medical needs of an Hispanic, largely Mexican-American, population. In the present study, the questionnaire was administered to women presenting for prenatal care. The data collected in this pilot study indicate that the questionnaire is effective in identifying individuals and families who would benefit from receiving additional information about a medical condition in their families, from genetic counseling or from a referral for high-resolution ultrasound or other diagnostic procedures.     

The future of genetics in public health

During the 1980s, we have witnessed an erosion in federal and state funding for the coordination of genetic services in state health departments. As this decade begins, the federal budget for the support of the national genetics program is less than half of the total available in 1980. In addition, priorities in state maternal and child health programs have changed, and genetic services have often received lower rankings aside of programs to improve prenatal care and to address problems such as teenage pregnancy. Clearly we are at a critical point for the future of genetics programs in the public health arena. Fortunately, despite the problems with funding and priority setting, important coalitions have been built during the past decade and continued advances in medical genetics have made it difficult for public health officials to ignore the potential impact of genetic services. Council of Regional Networks for Genetic Services (CORN) and the regional genetic services networks have provided opportunities for interaction and coordination between genetic services providers and public health officials that had not been available to any significant extent. The full potential of these coalitions has yet to be realized, but efforts in data collection, development of national guidelines and standards, and information sharing and networking have already had an influence on state genetic services programs. Continuing research on the genetics of chronic diseases and the influence of discoveries in molecular genetics will undoubtedly broaden the current scope of state public health programs in genetics, which all too often have been limited to newborn screening and administration of grants for genetic services. The regional and national genetic services programs should be strengthened and appropriate training programs should be developed in Schools of Public Health to provide the expertise and leadership that will be needed to guide the future of genetics in public health.     

Preconception Genetic Counseling: Three Years of Experience at a Community-Based Health Center

In the United States, access to genetic education and services is not equally available to all segments of the population, especially to women of minority backgrounds and low incomes. In response to this issue, the Preconception Genetic Health Education Program (PGHEP) was implemented in September of 1993 at the Woodlawn Maternal and Child Health Center in south side Chicago. The goal of this program is to provide access to genetic services to a previously underserved population. Women attending the family planning clinics are offered free, confidential preconception genetic screening and counseling on-site. As of January 1, 1997, 1300 women have participated in the program. The development and implementation of the PGHEP, client self-reports of family histories and beliefs, and implications for future delivery of genetic services are discussed.     

Factors associated with the mental health of adolescents when a parent has cancer

This study explored factors associated with the mental health in adolescents (ages 11-17; n = 54) within 12 months after a parent had been diagnosed with cancer. A control group was included (ages 11-17; n = 49). A demographic questionnaire, the SF-8 Health Survey, the Youth Self Report and the McMaster Family Assessment Device were used. Similar levels of psychological distress and healthy family functioning were reported in the clinical and the control group. No effect of gender of the ill parent and that of the adolescent was found. A negative correlation was found between the physical health of the ill parent and the mental health of the adolescent. Healthy family functioning correlated with less psychological distress in adolescents with a parent with cancer. Open communication, flexible problem solving and appropriate affective involvement were significant predictors for less psychological distress in the adolescents. The study concludes that a healthy family functioning facilitated the adolescent's adjustment to parental cancer.     

The Importance of Program Evaluation: How Can it be Applied to Diverse Genetics Education Settings?

The role of a genetic counselor often entails providing education to patient, community and/or health professional groups. While counseling supervision assists genetic counselors to be reflective about their clinical work and to enhance clinical skills, evaluation is a rather analogous process in the provision of education. Program evaluation of education activities can be applied to provide information about the needs of the target group (needs assessment), the delivery of the program (process evaluation) as well as determining the extent to which the education activity has met its intended aims (summative evaluation). Evaluation assists the educator to assess the impact of their program and provides an evidence base about genetics education. Although program evaluation can be a complex activity, the tools are ones that can be used by individuals to evaluate single or simple education activities. The components of evaluation are discussed with reference to genetic counseling practice and three very different examples of actual evaluations are provided to illustrate the diversity of evaluation strategy and programs to which it can be applied.     

Family characteristics as mediators of the influence of problem drinking and multiple risk status on child mental health

Structural equation modeling was used to test a theoretical model in which family cohesion and family reframing coping were hypothesized as mediators between family drinking problems, multiple risk factors, negative life events, and child mental health (conduct disorder, depression, anxiety) in two-parent families. Family cohesion mediated the relationships of family drinking problems and negative life events to child conduct disorder and depression. Negative life events mediated the relationships of family drinking problems and family multiple risk to child conduct disorder. Family reframing coping did not function as a mediator nor was it related to child mental health when other factors were considered simultaneously. Results indicate that increasing family cohesion and reducing sources of stress within the family (negative life events) represent promising areas for interventions for children with problem-drinking parents. Work on this study was funded in part by the National Institute for Mental Health Grant 2-P50-MH39246-06 to support a Preventive Intervention Research Center. The authors gratefully acknowledge contributions made by Rita Shell, Marcia Michaels, Joanne Gersten, George Knight, and Carolyn Berg.     

The Value of a Genetic Counselor: Improving Identification of Cancer Genetic Counseling Patients with Chart Review

Advances in genetics are changing cancer care and requiring institutions to maximize the unique skills of genetics professionals. The identification of genetic syndromes is vital for prevention and management of families with high cancer risks. Despite this, high risk individuals who qualify are often not referred. Genetic counselors could review oncology charts to improve identification. A genetics assessment tool developed by NCI Community Cancer Centers Program was used to perform self-assessment of the genetics program. A weekly report of all new oncology patients was provided to a genetic counselor for chart review. In 2010, 58 % of all eligible patients (n?=?152) were offered a genetics evaluation. In 2011 this improved to 70 % (n?=?167), which was a statistically significant difference, X ²(1)?=?5.13, p?=?0.02. By cancer site, ovarian cancer referrals also showed statistically significant improvement, X ²(1)?=?6.36, p?=?0.01. Breast and colon referrals were improved but not significant. Over 10 months, 129 patients were identified through the chart review program. Three were confirmed to have a genetic mutation for a hereditary cancer syndrome. An average week included review of 73 charts for 10 medical oncologists, 4 radiation oncologists, and 4 pediatric oncologists which generated 60–80 min of work for the genetic counselor. This program improved patient identification and quality, and allowed physicians to become more aware of opportunities for genetic counseling and more patients to receive genetic counseling and testing.     

Communication about DTC Testing: Commentary on a ‘Family Experience of Personal Genomics’

This paper provides a commentary on ‘Family Experience of Personal Genomics’ (Corpas 2012). An overview is offered on the communication literature available to help support individuals and families to communicate about genetic information. Despite there being a wealth of evidence, built on years of genetic counseling practice, this does not appear to have been translated clearly to the Direct to Consumer (DTC) testing market. In many countries it is possible to order a DTC genetic test without the involvement of any health professional; there has been heated debate about whether this is appropriate or not. Much of the focus surrounding this has been on whether it is necessary to have a health professional available to offer their clinical knowledge and help with interpreting the DTC genetic test data. What has been missed from this debate is the importance of enabling customers of DTC testing services access to the abundance of information about how to communicate their genetic risks to others, including immediate family. Family communication about health and indeed genetics can be fraught with difficulty. Genetic health professionals, specifically genetic counselors, have particular expertise in family communication about genetics. Such information could be incredibly useful to kinships as they grapple with knowing how to communicate their genomic information with relatives.     

Genetic testing and psychology. New roles, new responsibilities

Advances in genetics and genetic testing promise to catalyze a fundamental change in the practice of medicine. Psychologists have much to offer as psychotherapists, researchers, educators, and policymakers to a society heavily influenced by the genetic revolution. To make the most of new opportunities available to mental health professionals in genetics, psychologists must know basic genetic principles and learn what is new about 21st-century genetics. The core competencies for all health professionals developed by the National Coalition for Health Professional Education in Genetics are related in this article to the significant roles psychologists can play in helping individuals with genetic concerns to cope with vulnerability, optimize family interaction, and improve health behaviors.     

Family-level impact of the CHAMP Family Program: a community collaborative effort to support urban families and reduce youth HIV risk exposure

This article presents family-level results from an ongoing study examining the impact of the CHAMP (Chicago HIV prevention and Adolescent Mental health Project) Family Program, a family-based HIV preventative intervention meant to reduce the amount of time spent in situations of sexual possibility and delay initiation of sexual activity for urban youth in the 4th and 5th grades living in neighborhoods with high rates of HIV infection. The CHAMP Family Program has been developed, delivered, and overseen by a collaborative partnership, consisting of community parents, school staff, community-based agency representatives, and university-based researchers. Design of the program was informed by input from this collaborative partnership, child developmental theory of sexual risk, and empirical data gathered from the targeted community. This article presents findings that suggest CHAMP Family Program impact on family communication, family decision-making, and family-level influences hypothesized to be related to later adolescent HIV risk. Implications for future family-based HIV prevention research are discussed here.     

Using Genograms Creatively to Promote Healthy Lifestyles

ABSTRACT

Family therapists have used Genograms as an assessment tool for years to examine the interactions and relationships of family members across generations. This article discusses how a therapist can use a genogram creatively to help clients examine the impact of family relationships on healthy and unhealthy lifestyle patterns and how those relationships may be influencing the manner in which clients are currently managing their lives. The integration of a creative genogram can assist clients in recognizing inherited health-disease risks, learned lifestyle patterns, and parental behavior modeling. This technique can assist clients in developing a healthier lifestyle.     

The Alpha-1 Association Genetic Counseling Program: An Innovative Approach to Service

In an era of specialty medicine, genetic counselors are becoming increasingly focused in their service provision. The Alpha-1 Association Genetic Counseling Program, established in September 2007, specializes in confidential toll-free genetic counseling provided by a certified genetic counselor for Alpha-1 Antitrypsin deficiency, a co-dominant condition associated with lung and/or liver disease. The program received more than 600 callers in its first 2 years. Sixty-seven percent of new callers were family members, carriers, or health professionals. The number of callers increased between the first 2 years, with the greatest increases being family members and health professionals. Testing options and explanation of results encompassed 60% of initial reasons for calls. Seventy-two percent of referrals came from family and friends, test result letters, and the Alpha-1 Association. Between year 1 and 2 family member referrals showed the largest increase. This disease-specific genetic counseling program provides a model that may be useful for other rare disease communities.     

Oral contraceptive use among African American adolescents: Individual and community influences

Side effects of oral contraceptives are a noteworthy problem, particularly among low-income young women who reside in inner-city communities. The problem may be compounded by inadequate family planning services, particularly when such services are provided by general medical practices with high volumes of clients. This study examined the prevalence and correlates of pill-related side effects, with particular attention to the role of clinic characteristics. Participants were 177 pregnant and parenting African American adolescents and young women (average age=18.34). The experience of a pill-related side effect was the most frequently cited barrier to birth control use, and it was significantly related to contraceptive behavior. Finally, although participants attending comprehensive clinics experienced more barriers to medical service use than those attending neighborhood clinics, they reported fewer problems with pill-related side effects and better psychological functioning. Implications for future research and policy are discussed. This study was completed with the assistance of grants from the Illinois Department of Alcoholism and Substance Abuse, the National Institute of Child Health and Human Development, and the Office of Research on Women's Health to Jean Rhodes. Portions of this paper were presented at the 1993 Biennial Meeting of the Society for Community Research and Action, Williamsburg, Virginia. The authors gratefully acknowledge the assistance of Julian Rappaport, Joel Meyers, Hope Landrine, Lori Ebert, the Reverend Annette Collins, Margaret Daniels, Khya Lawrence, and the professionals and participants at the service settings.     

Systemic training for healthcare professionals: the Chicago Center For Family Health approach

There has been increasing interest in family-centered, collaborative, biopsychosocial models of care by health and mental health professionals and consumers. This trend has led to growing demand and development of specialized training in family systems approaches to health care. This article describes the Families, Illness, and Collaborative Healthcare programs developed at the University of Chicago affiliate, the Chicago Center for Family Health. The program philosophy is guided by the following principles: a systems orientation focused on the family, a Family Systems Illness Model, a family resilience framework, a family-centered collaborative model of health care, and a social justice and advocacy orientation. Specific training components that implement these principles are described, including intensive certificate and fellowships; workshops, conferences, and institutes; and consultation and training services for community-based organizations. Discussion includes professional networking opportunities, funding challenges, and policy recommendations.     

Social support and cancer: Adult patients' desire for support from family,friends, and health professionals

Examined cancer patients' desire for social support from family, friends, and health professionals upon whom they most depended for support. Before a single interaction with each of these sources, nonhospitalized adult cancer patients (N = 64) completed a questionnaire indicating their desire for support from the source on 11 functional components. Results indicated that emotional and instrumental functions of support were distinct and required separate examination. Distinctiveness of primary sources was manifest by patients' overall preference for tangible aid from family, modeling from friends who had cancer, and open communication and clarification from health professionals. Family and friends were equally preferred sources for dealing with affective reactions to the stressfulness of cancer. All three sources were similarly desired for self-esteem enhancement and for relief from decision-making and problem-solving responsibilities. Finally, patients' perceived prognosis but not the objective severity of their illness was associated with a heightened desire for support, especially for instrumental support functions.     

Genetic Counselling for Psychiatric Disorders: Accounts of Psychiatric Health Professionals in the United Kingdom

Genetic counselling is not routinely offered for psychiatric disorders in the United Kingdom through NHS regional clinical genetics departments. However, recent genomic advances, confirming a genetic contribution to mental illness, are anticipated to increase demand for psychiatric genetic counselling. This is the first study of its kind to employ qualitative methods of research to explore accounts of psychiatric health professionals regarding the prospects for genetic counselling services within clinical psychiatry in the UK. Data were collected from 32 questionnaire participants, and 9 subsequent interviewees. Data analysis revealed that although participants had not encountered patients explicitly demanding psychiatric genetic counselling, psychiatric health professionals believe that such a service would be useful and desirable. Genomic advances may have significant implications for genetic counselling in clinical psychiatry even if these discoveries do not lead to genetic testing. Psychiatric health professionals describe clinical genetics as a skilled profession capable of combining complex risk communication with much needed psychosocial support. However, participants noted barriers to the implementation of psychiatric genetic counselling services including, but not limited to, the complexities of uncertainty in psychiatric diagnoses, patient engagement and ethical concerns regarding limited capacity.     

The cost of treating substance use disorders: individual versus family therapy

This study examined the cost of substance use disorders treatment in a large healthcare organization. A survival analysis demonstrated that family therapy utilised the least number of sessions (M = 2.41) when treating substance use disorders followed by individual therapy (M = 3.38) and mixed therapy (M = 6.40). Family therapy was the least costly of the three types, at $124.55 per episode of care for a client, with individual therapy costing $170.22 and mixed therapy $319.55. The ratio of family therapists utilising family therapy was more than three to one compared to other licensed professionals. The percentages of clients coming back for more than one episode of care are fewest for family therapy (8.9%) followed by mixed therapy (9.5%) and individual therapy (12.0%).     

Interactive Genetic Counseling Role-Play: A Novel Educational Strategy for Family Physicians

Background Family physicians (FPs) are increasingly involved in delivering genetic services. Familiarization with aspects of genetic counseling may enable FPs to help patients make informed choices. Purpose Exploration of interactive role-play as a means to raise FPs’ awareness of the process and content of genetic counseling. Methods FPs attending two large Canadian family medicine conferences in 2005 were eligible—93 participated. FPs discussed a case during a one-on-one session with a genetic counselor. Evaluation involved pre and post intervention questionnaires Results FPs’ baseline genetic knowledge was self-rated as uniformly poor. Baseline confidence was highest in eliciting family history and providing psychosocial support and lowest in discussing risks/benefits of genetic testing and counseling process. Post-intervention, 80% of FPs had better appreciation of family history and 97% indicated this was an effective learning experience. Conclusions Role-play with FPs is effective in raising awareness of the process and content of genetic counseling and may be applied to other health disciplines. This research was funded by: The Canadian Institutes of Health Research (CIHR) Institute of Genetics, The Genetics Education Project (funded by the Ontario Women’s Health Council), and GeneSens (funded by a CIHR Interdisciplinary Capacity Enhancement Team Grant).     

“Almost There”...Why Clients Fail to Engage in Family Therapy: An Exploratory Study

A great deal of clinical research has sought to describe and suggest remedies for the client dropout phenomenon. However, few studies have addressed the equally pervasive, yet often ignored, non-engagement problem. An exploratory study was conducted to understand why many clients fail to engage in family therapy services after they have completed the initial intake. The results of the study suggest that therapist gender and experience level, clinic policies regarding videotaping sessions, family concerns, and changes in the presenting problem prior to the first session, had an impact on potential clients’ decision to engage in therapy. Implications and future research are discussed.Meng-ning Wang, MA, a doctoral student, and Jonathan Sandberg, PhD, a faculty member in the Marriage and Family Therapy Program at Syracuse University at Syracuse University are co-first authors. Amy Zavada, MA, Tziporah Rosenberg, MA, Aaron Jeffrey, MA, and Justin McPheters, MA, are doctoral students, and Mona Mittal, PhD, and Anne Gosling, PhD, are faculty in the same program.     

Family Therapy Study Group: The Mumbai Experience

Family therapy training in India is not provided in a systematic manner. Only one institution, the National Institute of Mental Health and NeuroSciences at Bangalore, offers this training, in the form of a three-month program. Consequently, a workshop on basic skills in Family Therapy was conducted in February 2003, at Mumbai, by a trained family therapist from Bangalore. The workshop resulted in founding the Family Therapy Study Group (Mumbai), a non-registered body, in March 2003 so that learning could continue to occur. The group meets once a month for two hours and has had 18 such meetings at this writing. This paper describes the objectives, activities, significant achievements, and future plans of the study group.