Kathleen A. Rounds

Parental attitudes regarding carrier testing in children at risk for fragile X syndrome

Sixty-five parents of individuals affected by fragile X syndrome who attended the National Fragile X Conference in Portland, Oregon (1996), were asked to complete a survey assessing parental level of concern about carrier testing in children at risk for fragile X syndrome. All subjects completed a 15-item paper and pencil Likert response scale measure that was developed specifically for this study. The items included parental rights and duties, psychological adjustment, adaptation, discrimination, harm, childbearing, and interpersonal relationships. The major concern of the parents was that their children have knowledge of their carrier status prior to becoming sexually active and that their children be able to marry informed of their genetic risk. Mothers were significantly more concerned than fathers about raising their children with the knowledge of their carrier status. A sense of parental right to make the decision regarding carrier testing for children was associated with concerns about (1) behavioral or educational problems, (2) knowledge of carrier status prior to sexual activity or marriage, and (3) adjustment of the children to knowledge of their carrier status. As the sample was drawn from a unique population of parents, the results of this survey should be interpreted with caution. The findings of this study suggest a model of parents providing anticipatory guidance for their children to help them adjust to carrier information and for their children to have this knowledge prior to the possibility of reproduction.

Responding to AIDS: rural community strategies.

Small towns and rural communities often react with fear and misunderstanding toward persons with AIDS. The author discusses factors that influence how rural communities respond to AIDS and proposes strategies for providing education and care and for influencing policy.

The UNC-CH MCH Leadership Training Consortium: Building the Capacity to Develop Interdisciplinary MCH Leaders

This article describes the UNC-CH MCH Leadership Consortium, a collaboration among five MCHB-funded training programs, and delineates the evolution of the leadership curriculum developed by the Consortium to cultivate interdisciplinary MCH leaders. In response to a suggestion by the MCHB, five MCHB-funded training programs—nutrition, pediatric dentistry, social work, LEND, and public health—created a consortium with four goals shared by these diverse MCH disciplines: (1) train MCH professionals for field leadership; (2) address the special health and social needs of women, infants, children and adolescents, with emphasis on a public health population-based approach; (3) foster interdisciplinary practice; and (4) assure competencies, such as family-centered and culturally competent practice, needed to serve effectively the MCH population. The consortium meets monthly. Its primary task to date has been to create a leadership curriculum for 20–30 master’s, doctoral, and post-doctoral trainees to understand how to leverage personal leadership styles to make groups more effective, develop conflict/facilitation skills, and identify and enhance family-centered and culturally competent organizations. What began as an effort merely to understand shared interests around leadership development has evolved into an elaborate curriculum to address many MCH leadership competencies. The collaboration has also stimulated creative interdisciplinary research and practice opportunities for MCH trainees and faculty. MCHB-funded training programs should make a commitment to collaborate around developing leadership competencies that are shared across disciplines in order to enhance interdisciplinary leadership.

Practice with Culturally Diverse Families of Young Children with Disabilities

Young children from racial minority groups are at higher risk for disabilities and developmental delay as a result of conditions associated with poverty. The authors discuss principles that guide culturally competent practice with families of infants and toddlers with disabilities and ways in which family-centered practice approaches incorporate these guidelines. Practitioner strategies for developing cultural competence in order to work responsively with this diverse population are presented.

Early intervention services for very young children and their families under P.L. 99-457

This article addresses early intervention services for children, birth to kindergarten age, who experience developmental deficits and delays that may later be identified as learning disabilities. P.L. 99-457 is briefly reviewed with a focus on elements that emphasize family-centered practice. Vignettes are presented to illustrate interventive strategies that promote parent empowerment, and parent-professional and interagency collaboration.

P.L. 99-457

In 1986, Congress amended the Education of the Handicapped Act (Public Law [P.L.] 94-142) and authorized an early intervention program under that act for disabled infants and toddlers and their families. This legislation, P.L. 99-457, Part H, changed the kinds of services that infants and toddlers with disabilities—or those at risk—and their families would receive. The authors report the findings from a survey that examined the extent to which master of social work programs prepare students to work with this population. Based on the survey findings, they suggest that, for social workers to respond effectively to the mandates of P.L. 99-457, Part H, graduate social work programs must address personnel preparation issues, such as the gaps in content on this population in both the core and elective curricula; specialization with this population, lack of student interest; curriculum flexibility, and training monies; and need for additional training materials.

Perceptions about the implementation of a statewide service coordination program for young children: Importance of organized context

Care coordination is an efficient mechanism for improving access to appropriate health and human services for diverse populations. Although many models have been formulated, there are little empirical data about the impact of organizational context on the implementation of care coordination. Child service coordinators (CSCs), employed by different agencies providing service coordination under a large statewide program for young children at risk and their families, were surveyed. Significant differences between service coordinators working in public health and those working in early intervention programs emerged in job description and caseload size, communication with CSCs in other agencies, tracking, completion of required reports, and training and continuing education needs. We discuss the implications of these differences for planning service coordination systems.

Level of Parental Involvement on Early Childhood Intervention Teams

The authors report the results of a study of the relationship between the level of parent involvement on early childhood intervention teams and social worker membership on the team. Results of the study, based on a sample of 55 early intervention team members, supported the hypothesis that the presence of a social worker as a regular member of the early intervention team is associated with a higher level of parent involvement. Strategies to facilitate an active role for parents on multidisciplinary early intervention teams are presented.

Partnering with parents in interprofessional leadership graduate education to promote family–professional partnerships

ABSTRACT Evidence supports the benefits to families of relationships with professionals that build on the concept of partnership, but there are few studies in the literature of strategies involving joint education for parents and professionals to enhance the capacity of parents of children with special healthcare needs to be effective interprofessional partners. Since 2007, parents of children with special healthcare needs have participated alongside graduate students from five different profession-based training programmes in a structured interprofessional leadership programme. The aims of this summative evaluation study were to elicit the influences of this training model on parents’ capacity to partner with both health professionals and other parents and explore features of the training that facilitated these partnership skills. Using qualitative analysis, a semi-structured interview, guided by sensitising concepts informing leadership development, was conducted with 17 of the 23 parents who participated in the training. Transcriptions of the interviews were used for creating codes and categories for analysis. Parents described how the programme enhanced abilities to see other points of view, skills in communicating across professions, skills in conflict management, and feelings of confidence and equality with providers that influenced their relationships with their own providers and their capacity to assist other parents in addressing challenges in the care of their children. Parents reported that building concrete skills, organised opportunities to hear other viewpoints, structured time for learning and self-reflection, and learning in the context of a trusting relationship facilitated the development of partnership skills. These findings suggest that the leaders of interprofessional training programmes should involve parents and graduate students as equal partners to enhance partnership skills.

Book Review: AIDS: A Complete Guide to Psychosocial InterventionAIDS: A Complete Guide to Psychosocial Intervention. Edited by LandHelenMilwaukee: Family Service America, Inc., 1992. 318 pp.

AIDS: A Complete Gtude to Psychod lntervention examines the complexity and challenges of AIDS service provision across a continuum of care. Helen Land has compiled the work of 26 contributors, many of whom are pioneers and experts in providing services to persons with HlV/ AIDS. The 19 chapters in this edited volume are organized into three sections: intervention across service settings, service delivery to diverse populations, and special topics in clinical work. The first section focuses on intervention in a variety of service settings and includes chapters on education and prevention programs, outpatient services, hospitals and acute-care settings, home care, hospice care, and alternative service organizations. Each chapter examines practitioner roles and tasks, programmatic issues, service delivery models and their goals, the needs of culturally diverse population groups, and the effectiveness of the service setting in meeting the needs of clients with HIV disease. The chapters describing traditional service settings, for example, hospitals, home care, and hospice care, are thorough and present clinical case examples and interventions specific to varying phases of illness. Nontraditional, community-based organizations have played and continue to play a major role in developing and providing services to persons with HIV. Thus, two chapters, one on outpatient services and one on alternative service organizations, are particularly relevant to our understanding of AIDS service delivery. Sally Jue, in her chapter on outpatient services, discusses organizational issues that are unique to AIDS organizations. These include workers and volunteers having the same illness as the clients whom they serve and the consequent blurring of boundaries between professional and personal life for many workers. She explores the implications of these issues for organizational functioning and presents strategies for dealing with them. Wilbur Finch, writing about the evolution of alternative service organizations, discusses changes in service goals and resources, staffing, structure and process, size and technology, and leadership. The author describes the dilemmas that many of these organizations confront. These include the desire to remain independent of the traditional service system while being dependent upon public funding sources and the wish to remain small to maintain the organization’s participatory nature versus the need to expand and change organizational structure to provide services to the growing client population. Although the author uses case examples from organizations in the Los Angeles area, many of the issues discussed apply to the development of alternative service delivery in other parts of the country. Overall, this first section covers the components of the service system in a comprehensive manner and lays the foundation for the next two sections, which focus specifically on the needs of special populations and clinical practice. An additional chapter addressing service integration, interagency collaboration and networking, and forming community coalitions would have helped bring the chapters in the first section together, however. Without such a chapter, the reader is left wondering how the various service components work together to address gaps and overlaps in services, turf battles and competition for scarce dollars and resources, and planning for future needs as the AIDS epidemic continues to evolve. The second section in this volume, on service delivery to diverse population groups, contains chapters on providing services to gay men, injection-drug users, people of color, women, the homeless, caregivers (partners, friends, and family members), and professional caregivers. Gary Lloyd, in describing the context for providing services to gay men with AIDS, reminds us of the powerful role that homophobia has played and continues to play in our response to HIV disease. He presents a range of clinical and psychosocial interventions to deal with the devastating impact that AIDS has had on gay men, whom he describes as “a stigmatized group . . . decimated by a stigmatized and stigmatizing affliction. . . . The entire gay community is marked by a sense