Training Genetic Counsellors to Deliver an Innovative Therapeutic Intervention: their Views and Experience of Facilitating Multi-Family Discussion Groups

Innovations in clinical genetics have increased diagnosis, treatment and prognosis of inherited genetic conditions (IGCs). This has led to an increased number of families seeking genetic testing and / or genetic counselling and increased the clinical load for genetic counsellors (GCs). Keeping pace with biomedical discoveries, interventions are required to support families to understand, communicate and cope with their Inherited Genetic Condition. The Socio-Psychological Research in Genomics (SPRinG) collaborative have developed a new intervention, based on multi-family discussion groups (MFDGs), to support families affected by IGCs and train GCs in its delivery. A potential challenge to implementing the intervention was whether GCs were willing and able to undergo the training to deliver the MFDG. In analysing three multi-perspective interviews with GCs, this paper evaluates the training received. Findings suggests that MFDGs are a potential valuable resource in supporting families to communicate genetic risk information and can enhance family function and emotional well-being. Furthermore, we demonstrate that it is feasible to train GCs in the delivery of the intervention and that it has the potential to be integrated into clinical practice. Its longer term implementation into routine clinical practice however relies on changes in both organisation of clinical genetics services and genetic counsellors’ professional development.     

An integrated model for intervention with infants,preschool children,and their maltreating parents

Service delivery systems for maltreating parents need to be comprehensive, integrated, and coordinated in order to address the ecological, developmental, and psychotherapeutic needs of maltreating families. This article presents a center-based, intensive model of intervention for multiproblem, maltreating families. The program described addresses the needs of the entire family; incorporates the evaluation and treatment of the child's, as well as the parent's, development; and provides services in a multifamily group milieu. The following interventions are integrated in the treatment approach: (1) family milieu approach, (2) assistance with functioning of the “parental ego,” (3) traditional therapies, and (4) developmental-structuralist approach to parent-child interaction. Challenges encountered and solutions employed in working with maltreating families are discussed. A detailed case study is presented to illustrate the types of interventions used.     

Involving caregiving grandmothers in family interventions when mothers with substance use problems are incarcerated

The alarming rate of incarceration of women disproportionately affects women of color, frequently intersects with the women's substance use problems, and often results in grandmothers providing care for their grandchildren during their daughters' incarceration. Numerous factors complicate the grandmothers' caregiving experiences and contribute to strains that exceed those typically associated with grandparent caregiving. Such complicating factors include the stresses associated with their daughters' substance use problems and incarceration; the complex biopsychosocial needs of many of their grandchildren; the challenging relational issues they must address; and often, the long-term, multifaceted effects of poverty. Despite the critical roles they play, the multiple vulnerabilities they face, and the potential for multigenerational, culturally relevant family interventions to yield gains for all three generations, grandmothers have received little attention in intervention research with this group of families. This paper provides a theoretical and empirical rationale for the inclusion of caregiving grandmothers in interventions and research with families affected by maternal incarceration and substance use problems, in general, and for the promise of multifamily groups, in particular. Strategies for tailoring multifamily groups with this population of families are also included.     

The Amish: Perceptions of genetic disorders and services

Previous studies of the closed Amish population have proven to be valuable in the field of genetics, however they have not explored the Amish parents' opinions and attitudes concerning genetic conditions and services. This exploration is necessary in order to provide culturally sensitive health care to a population at an increased risk for certain genetic conditions. The purpose of the present study was to examine the Amish population's general knowledge of genetic disorders, services, and the terminology used in describing inherited conditions, as well as their attitudes toward medical care and ethical and reproductive issues. Information was obtained from 17 Amish families, 12 who had an incidence of a genetic condition and five who had one or more children with other special health care needs, during personal interviews conducted in their homes in Lancaster, Pennsylvania. Results of the interviews showed that the birth of an affected child did not deter subsequent reproduction, that the majority of the parents were never offered genetic counseling or prenatal testing, and that the parents are interested in understanding the cause of their children's problems and recurrence risks.     

Feasibility,Acceptability, and Preliminary Outcomes of the Fortalezas Familiares Intervention for Latino Families Facing Maternal Depression

This pilot study examined the feasibility, acceptability, and preliminary outcomes of a linguistically and culturally adapted intervention for immigrant Latina mothers with depression and their families. Fortalezas Familiares (Family Strengths) is a community‐based, 12‐week, multifamily group intervention that aims to increase communication about family processes leading up to and affected by the mother's depression, build child coping and efficacy, enhance parenting competence and skills, and promote cultural and social assets within the family. In terms of feasibility, of 16 families who enrolled and participated in the intervention, 13 families attended more than 90% of meetings and completed the intervention. Posttests reported positive changes following the intervention, including improved psychological functioning, increased family and marital support, and enhanced family functioning, as reported by mothers and other caregivers. Mothers also reported decreased conduct and hyperactivity problems among their children. Children reported positive changes in their psychological functioning and coping, parenting warmth and acceptance, and overall family functioning. Postintervention focus groups and surveys measuring acceptability revealed families' satisfaction with the intervention and suggested areas of improvement. We discuss similarities and differences in outcomes between the adapted intervention, Fortalezas Familiares, and the original intervention, Keeping Families Strong, and propose future areas of intervention adaptation and development.     

The Colored, Eco-Genetic Relationship Map (CEGRM): A Conceptual Approach and Tool for Genetic Counseling Research

The Colored Ecological and Genetic Relational Map (CEGRM) [pronounced see-gram] is a conceptual approach and tool for presenting information about family and nonkin relationships and stories about inherited diseases in a simple, understandable form. It combines information that can be derived from pedigrees, genograms, ecomaps, and social network analysis in a single, or series of, pictorial maps based on colors and shapes. The CEGRM is based on a social systems perspective, particularly emphasizing social exchange and resource theories. The CEGRM should be particularly useful in genetic counseling research with members of suspected cancer-risk families or families with other late-onset inherited diseases. A genetic counseling client comes with a social history and context as well as a genetic one. Client decision-making in terms of reproductive plans, therapeutic intervention, lifestyle behavior and sharing or withholding of genetic information frequently becomes enmeshed with preexisting psycho-social relationships among biological kin, affinal kin (in-laws) and fictive kin (friends who act as family). The CEGRM makes it easier to compare different types of social interactions between the client and his/her significant others and among family members on the same dimensions.     

Examining the initial usability,acceptability and feasibility of a digital mental health intervention for college students in India

Generalised anxiety disorder (GAD) is prevalent among college students in India; however, barriers like stigma, treatment accessibility and cost prevent engagement in treatment. Web- and mobile-based, or digital, mental health interventions have been proposed as a potential solution to increasing treatment access. With the ultimate goal of developing an engaging digital mental health intervention for university students in India, the current study sought to understand students' reactions to a culturally and digitally adapted evidence-based cognitive behavioural therapy (CBT) for GAD intervention. Specifically, through theatre testing and focus groups with a non-clinical sample of 15 college students in India, the present study examined initial usability, acceptability and feasibility of the “Mana Maali Digital Anxiety Program.” Secondary objectives comprised identifying students' perceived barriers to using the program and eliciting recommendations. Results indicated high usability, with the average usability rating ranking in the top 10% of general usability scores. Participants offered actionable changes to improve usability and perceived acceptability among peers struggling with mental health issues. Findings highlight the benefits of offering digital resources that circumvent barriers associated with accessing traditional services. Results build on existing evidence that digital interventions can be a viable means of delivering mental healthcare to large, defined populations.     

Genetic Counseling Services and Development of Training Programs in Malaysia

Genetic counseling service is urgently required in developing countries. In Malaysia, the first medical genetic service was introduced in 1994 at one of the main teaching hospitals in Kuala Lumpur. Two decades later, the medical genetic services have improved with the availability of genetic counseling, genetic testing and diagnosis, for both paediatric conditions and adult-onset inherited conditions, at four main centers of medical genetic services in Malaysia. Prenatal diagnosis services and assisted reproductive technologies are available at tertiary centres and private medical facilities. Positive developments include governmental recognition of Clinical Genetics as a subspecialty, increased funding for genetics services, development of medical ethics guidelines, and establishment of support groups. However, the country lacked qualified genetic counselors. Proposals were presented to policy-makers to develop genetic counseling courses. Challenges encountered included limited resources and public awareness, ethical dilemmas such as religious and social issues and inadequate genetic health professionals especially genetic counselors.     

Increasing parenting self-efficacy: The Fussy Baby Network® intervention

High levels of infant crying place families at risk for disrupted relationships, parenting stress, and even for child maltreatment. We conducted an evaluation of the Fussy Baby Network^® (FBN), a program supporting families struggling with infant crying and related concerns. The study contrasted 29 families who sought help from FBN with 27 families with excessively crying infants who did not seek services. Researchers measured parenting self-efficacy, depression, and stress in each group before and after the intervention. Results from hierarchical multiple regression analysis indicated greater improvements over time in parenting self-efficacy for parents receiving FBN services. Furthermore, the greater improvements in parenting self-efficacy in the intervention group were not directly attributable to reductions in infant crying. These findings provide preliminary evidence that the FBN approach may be effective at boosting the confidence of parents struggling with caring for their infants. Future research with larger samples with baseline equivalence and stronger research designs should explore this intervention further. This study also suggests that interventions for families with excessively crying infants should move beyond the focus of reducing infant crying to a broader strategy of supporting parents and strengthening relationships between parents and their infants to build parenting capacity.     

Culturally Adapted Psychosocial Interventions for Schizophrenia: A Review

Recent research examining the potential efficacy of culturally adapted interventions for various mental disorders illustrates increasing interest in the integration of cultural perspectives into mental health systems. Despite recent evidence demonstrating that culturally adapted interventions may be more effective than a one-size-fits-all approach, few psychosocial treatments for schizophrenia consider cultural factors that may enhance their efficacy with diverse populations. The aim of this review is to discuss the empirical evidence examining the potential utility of culturally adapted group interventions for schizophrenia, as a means to encourage further work and expansion in this area. Specifically, this article provides an in-depth review of the empirical literature on culturally adapted psychosocial interventions for individuals with schizophrenia and their family members, with a focus on group-based interventions. This review is followed by a discussion of a few cultural constructs that may impact patient and family member functioning, and therefore may be important to address in psychosocial treatments for schizophrenia. Finally, we end this review with a broad discussion of research limitations and potential areas for additional research, clinical implications for adapting EBTs to better address cultural concerns, and a case vignette to illustrate how cultural considerations can be integrated into a traditional multifamily group therapy approach.     

Pilot Evaluation of a University-Based Training in Trauma-Informed Services for Gang Intervention Workers

The purpose of this pilot study was to investigate the feasibility and efficacy of a course designed to bring trauma-informed practices into community-based intervention programming for gang-involved youth and families. There have been no formally evaluated trauma trainings for gang intervention workers to date. Thirty gang intervention workers completed a University-based course on trauma, which aimed to raise the level of knowledge regarding trauma exposure and its effects on youth, increase intervention workers’ confidence in their ability to identify and respond to posttraumatic stress reactions among clients, and build resilience among staff. Pre-post results revealed that participants significantly improved in their knowledge related to trauma and confidence in their ability to respond to trauma among clients. Participants also rated themselves significantly higher on these domains compared to gang intervention workers who did not take the course. Participants rated the course positively on dimensions that are associated with staff members’ willingness to implement evidence-based interventions following training. The findings indicate a number of important recommendations for supporting gang intervention workers and integrating trauma-informed practices into gang intervention services.     

The Views of Pakistani Doctors Regarding Genetic Counseling Services – Is there a Future?

Pakistan is a densely populated country in South Asia with a high burden of genetic disease. A dearth of medical genetic services exists and master’s level trained genetic counselors (GCs) are currently not a part of the healthcare system. This study is the first to determine the views of Pakistani medical doctors (MDs) towards genetic counseling services in Pakistan, including what manner a master’s level genetic counselor might be incorporated into the healthcare system. Fifty-one MDs practicing in the city of Karachi completed a self-administered survey of twenty questions. Of the 49 respondents who answered a specific question, 100 % (49/49) felt that they would refer at least some, if not all, of their relevant patients to a genetic’s clinic if one existed in Karachi. Overall, the respondents showed a positive attitude towards the provision of genetic counseling services as a part of the healthcare system of Pakistan. Some of the proposed roles identified specifically for GCs included: explaining how Down syndrome occurs (66.1 %), discussing genes associated with breast cancer (77.4 %), and explaining the inheritance pattern of β-thalassemia (65.5 %). In contrast, the review of medical and family history and discussion of medical procedures such as ultrasound and amniocentesis were typically seen as the role of a physician. A majority of the respondents (98 %) were in favor of premarital carrier screening for thalassemia and would refer patients to a GC to describe the importance of carrier screening (84.3 %) and to help explain carrier screening results (94.1 %). Many respondents selected GCs as the ideal provider of education and support for people with inherited conditions (43.8 %), followed by specialist MDs (26 %) and general physicians (22.9 %). Considering the high burden of genetic disease in the country, we encourage the development of genetic counseling services in Pakistan.     

“Where Does it Come from?” Experiences Among Survivors and Parents of Children with Retinoblastoma in Kenya

Genetic testing and counseling have become integral to the timely control of heritable cancers, like the childhood eye cancer retinoblastoma. This study aimed to determine attitudes, knowledge and experiences related to retinoblastoma genetics, among survivors and parents of children with retinoblastoma in Kenya. This qualitative study used focus groups as the primary data collection method, coupled with a brief demographic questionnaire. Study settings were Kenyatta National Hospital and Presbyterian Church of East Africa Kikuyu Hospital. Thematic analysis was used to identify key themes. Thirty-one individuals participated in five focus groups. Two main concepts emerged: (1) the origins of retinoblastoma are unclear, and (2) retinoblastoma is associated with significant challenges. The lack of clarity surrounding the origins of retinoblastoma was linked to limited knowledge of retinoblastoma genetics, and limited genetic counseling delivery and uptake. The challenges associated with retinoblastoma were discussed in terms of the impact of the diagnosis on individuals and families, and unmet healthcare needs related to the diagnosis. Next steps will incorporate these findings to develop evidence-informed and accessible cancer genetic services in Kenya.     

The Nurturing Program: An Intervention for Parents of Children with Special Needs

Evidence-based psychosocial family interventions enhancing empathy and empowerment are particularly beneficial to families of children who have developmental disabilities. This study assessed the effectiveness of an intervention called the Nurturing Program for Parents and Their Children with Special Needs and Health Challenges (SNHC). Eighty-seven families were enrolled and randomly assigned to a control or treatment group. Forty-six families in the control group received individualized case management (CM) services and forty-one families in the treatment group were assigned to 12 sessions of the SNHC curriculum along with case management services. Before and after the intervention, participants in both conditions completed the Adult and Adolescent Parenting Index-2 assessing parents’ attitudes toward child rearing and the Family Empowerment Scale (FES) measuring family empowerment. Caregivers in the intervention condition improved in empathy towards children’s needs, F(1, 54)?=?4.52, p?=?.04; and all families, both control group and treatment group, improved their attitudes towards the use of corporal punishment by posttest, F(1, 54)?=?6.56, p?=?.013. Also, all caregivers increased in their empowerment over the course of the intervention, F(1, 50)?=?13.28, p?=?.001. Attrition, 22–26% among CM and 51–56% among SNHC+CM, limited generalizability as did participants not completing all SNHC sessions. Despite these limitations, findings suggest that early interventions catering to families of children with developmental disabilities have a positive impact on parenting. To varying degrees, both conditions provided caregivers with tools that positively affected the quality of the parent–child relationships and promoted empowerment.     

Preparing the Field for Feasibility Testing of a Parenting Intervention for War‐Affected Mothers in Northern Uganda

In this article, we discuss the successful implementation of an adapted evidence‐based parenting intervention for families affected by two decades of war in Northern Uganda. The adaptation and adoption of such interventions to support mental health and family functioning is widely endorsed by prevention scientists and considered a priority in global mental health. The preparation and early adoption phases of engaging with a highly vulnerable community affected by war trauma are documented in this paper along with a discussion of the steps taken to adapt a parenting intervention for cultural and contextual fit. This study is a component of an overall program of research aimed at reducing the long‐term negative effects of war on parenting practices and childhood outcomes, which have considerable implications for preventing mental, neurological, and substance‐use disorders. The processes described here cover a 4‐year period culminating in the implementation of the nine‐session Enhancing Family Connection intervention piloted with a group of 14 mothers. The lessons in cultural adaptation have been valuable and the feasibility results promising for further testing the intervention.     

Housing and Child Welfare: Emerging Evidence and Implications for Scaling up Services

Inadequate housing threatens family stability in communities across the United States. This study reviews emerging evidence on housing interventions in the context of scale‐up for the child welfare system. In child welfare, scale‐up refers to the extent to which fully implemented interventions sustainably alleviate family separations associated with housing instability. It incorporates multiple aspects beyond traditional measures of effectiveness including costs, potential reach, local capacities for implementation, and fit within broader social services. The framework further encompasses everyday circumstances faced by service providers, program administrators, and policymakers who allocate resources under conditions of scarcity and uncertainty. The review of current housing interventions reveals a number of systemic constraints for scale‐up in child welfare. Reliance on rental assistance programs limits capacity to address demand, while current practices that target the most vulnerable families may inadvertently diminish effectiveness of the intervention and increase overall demand. Alternative approaches that focus on homelessness prevention and early intervention must be tested in conjunction with community initiatives to increase accessibility of affordable housing. By examining system performance over time, the scalability framework provides an opportunity for more efficient coordination of housing services within and outside of the child welfare system.     

If We Build It … Will They Come? – Establishing a Cancer Genetics Services Clinic for an Underserved Predominantly Latina Cohort

Background: Cancer genetic counseling and testing is a standard of care option for appropriate families and can identify individuals at increased risk prior to diagnosis, when prevention or detection strategies are most effective. Despite documented efficacy of cancer risk reduction in high-risk individuals, underserved and minority individuals have a disproportionate cancer burden and limited access to genetic counseling. Methods: A needs assessment survey documented gaps in knowledge and interest in prevention. Satellite clinics were established at two indigent healthcare systems. Cancer genetics CME lectures were conducted and referral guidelines disseminated to clinicians who referred patients for counseling. Results: An increase in clinician knowledge was demonstrated post-CME and reflected by quality referrals. Eighty-eight percent of patients kept their appointments. In the predominantly Latina⁶ (n=77) clinic population, 71.4% were affected with cancer, and 17 mutation positive families were identified. Preliminary data shows a positive impact on patients' motivation and behavior. The majority has expressed satisfaction and reduction in anxiety. Conclusions: This study demonstrates feasibility and acceptability of cancer genetics services in this population, suggesting the potential to reduce cancer morbidity in underserved, high-risk families.“Latino” is the most common census term for individuals of Spanish, Mexican, Central and South American, Cuban, or Puerto Rican descent, referring to ethnicity, and is generally considered a more ethnically/culturally based term for individuals of the aforementioned groups. As this cohort is female the feminine noun “Latina” is used     

Educating Genetic Counselors in Australia: Developing an International Perspective

The demand for genetic counseling services is increasing worldwide. This paper highlights the Australian experience of genetic counselor education and the history of the profession. The relevance of local factors, including the healthcare system, the education system and the small population in the evolution of the 1-year training programs are considered as an alternative model for emerging programs. The development of the education and training processes compared to that of other countries namely the United States of America (USA), the United Kingdom (UK) and Canada is discussed. The importance of international collaborations between the programs, to facilitate academic discussion and possible curriculum innovations, and to maintain professional understanding between genetic counselors is emphasized. Core genetic counseling competencies have been published for the UK and USA and an Australian set is proposed. In conclusion future directions are considered, including international issues around genetic counseling certification, reciprocity, and the potential for an Australian role in training genetic counselors in South East Asia.     

Using Community Partnerships to Better Understand the Barriers to Using an Evidence‐Based,Parent‐Mediated Intervention for Autism Spectrum Disorder in a Medicaid System

Service use disparities have been noted to impede under‐resourced families' ability to access high‐quality services for their child with autism spectrum disorder (ASD). These disparities are particularly relevant for parent‐mediated interventions and may suggest a lack of fit between these interventions and the needs of under‐resourced community settings. This study used Roger's Diffusion of Innovations theory to guide community partnerships aimed at understanding the perceived compatibility, complexity, and relative advantage of using an evidence‐based, parent‐mediated intervention (Project ImPACT) within a Medicaid system. Three focus groups were conducted with 16 Medicaid‐eligible parents, and three focus groups were conducted with 16 ASD providers operating within a Medicaid system. Across all groups, parents and providers reported general interest in using Project ImPACT. However, primary themes emerged regarding the need to (a) reduce the complexity of written materials; (b) allow for a more flexible program delivery; (c) ensure a strong parent–therapist alliance; (d) involve the extended family; and (e) help families practice the intervention within their preexisting routines. Results are discussed as they relate to the design and fit of evidence‐based, parent‐mediated interventions for under‐resourced community settings.     

Multidimensional Family Therapy HIV/STD Risk-Reduction Intervention: An Integrative Family-Based Model for Drug-Involved Juvenile Offenders

Drug and juvenile justice involved youths show remarkably high rates of human immunodeficiency virus (HIV)/sexually transmitted disease (STD) risk behaviors. However, existing interventions aimed at reducing adolescent HIV risk behavior have rarely targeted these vulnerable young adolescents, and many approaches focus on individual-level change without attention to family or contextual influences. We describe a new, family-based HIV/STD prevention model that embeds HIV/STD focused multifamily groups within an adolescent drug abuse and delinquency evidence-based treatment, Multidimensional Family Therapy (MDFT). The approach has been evaluated in a multisite randomized clinical trial with juvenile justice involved youths in the National Institute on Drug Abuse Criminal Justice Drug Abuse Treatment Studies ( http://www.cjdats.org ). Preliminary baseline to 6-month outcomes are promising. We describe research on family risk and protective factors for adolescent problem behaviors, and offer a rationale for family-based approaches to reduce HIV/STD risk in this population. We describe the development and implementation of the Multidimensional Family Therapy HIV/STD risk-reduction intervention (MDFT-HIV/STD) in terms of using multifamily groups and their integration in standard MDFT and also offers a clinical vignette. The potential significance of this empirically based intervention development work is high; MDFT-HIV/STD is the first model to address largely unmet HIV/STD prevention and sexual health needs of substance abusing juvenile offenders within the context of a family-oriented evidence-based intervention.