Engaging and Supporting Young Children and their Families in Early Childhood Mental Health Services: The Role of the Family Partner.

This study explores the role of family partners, peer professionals with lived experiences of raising a child with behavioral health needs, and their value in primary and community-care based mental health services for young children aged 0-8 years. Interviews and focus groups were conducted with staff, leadership, and caregiver participants (n = 38) from two early childhood mental health programs and analyzed using thematic analysis. Five interdependent themes emerged: (1) the centrality of lived experience to the family partner role; (2) the importance of the family partner in family engagement and relationship building; (3) the value added by the family partner in navigating systems; (4) the ability of the family partner to build skills and empower caregivers; (5) the role of the family partner in alleviating caregiver stress and other mental health concerns. Adapting and expanding the role of family partners will improve effective mental health care for children and their caregivers.

Factors associated with preventive dental care-seeking behavior among people living with HIV.

OBJECTIVES: This study examined factors associated with preventive dental care-seeking behavior among HIV-positive adults who participated in a federally funded demonstration project to expand access to oral health care. METHODS: Two thousand one hundred eighty-seven adults living with human immunodeficiency virus (HIV) in the United States were enrolled in free dental care and were interviewed about their reasons for seeking care, their oral health, and overall health status. Multivariate analysis using Generalized Estimating Equations to control for clustering by site was conducted to identify factors associated with preventive care-seeking behavior. RESULTS: Forty-one percent of participants reported the only reason they sought dental care was for preventive care, to receive a checkup or cleaning. Factors associated with preventive care-seeking behavior in multivariate analysis included no unmet need for dental care since testing HIV positive, no dental insurance, taking HIV medications and better overall oral health. CONCLUSIONS: Many HIV-positive adults may seek preventive care when it is offered at no cost. Interventions that address unmet needs and target individuals who are not taking HIV medications or have poorer oral health may improve preventive practices.

A typology of models for expanding access to oral health care for people living with HIV/AIDS.

OBJECTIVES: This article describes a typology of program models for expanding access to dental services for people living with HIV/AIDS (PLWHA). These programs serve communities with limited access and high unmet need for oral health care, such as rural areas, low-income and racial/ethnic minorities. METHODS: Interviews and site visits with dental and program directors were conducted at participating sites, including AIDS service organizations, community health centers, and university-affiliated medical centers or hospitals. RESULTS: Despite the differences across organizational structure, similar models and approaches were developed to engage and retain PLWHA in dental care. These approaches included: using mobile dental units; expanding the type and availability of previous dental services provided; providing training opportunities for dental residents and hygienists; establishing linkages with medical providers; providing transportation and other ancillary services; using dental case managers and peer navigators to coordinate care; and patient education. CONCLUSIONS: This typology can assist program planners, medical and dental care providers with service delivery strategies for addressing the unmet need for oral health care in their area.

Peer knowledge and roles in supporting access to care and treatment.

People living with HIV (PLWHIV) have been involved in the continuum of HIV care since the early days of the epidemic providing education and prevention services. There is a growing interest in utilizing HIV positive peers to support access to care and treatment, but little is known about the range of roles these peers perform and what they need to know to do this work. This study of 186 HIV-positive peers currently providing community health services in eight states found that peers perform a wide range of roles, including assistance with care and treatment, emotional support, and service referrals. Over 80% discussed medications with clients. On average, experienced peers provided correct responses to 73% of questions about HIV and AIDS, and 65% of questions about the appropriate role of a peer. Peers living with HIV for more than 5 years, in paid employment with more than a high school education had higher HIV knowledge scores than volunteers. Higher education, length of time living with HIV, age and speaking English as the primary language were associated with higher peer knowledge scores. This study suggests that we cannot assume that peers already working in the field are fully knowledgeable about HIV care and treatment or peer roles. It is important to address gaps in knowledge through continuing education and to create common standards for the training and skills that peers who work in community health settings need to have.

Program design and evaluation strategies for the Special Projects of National Significance Outreach Initiative.

Through its Targeted HIV Outreach and Intervention Model Development (Outreach Initiative), the Health Resources and Services Administration's Special Projects of National Significance (SPNS) program funded ten demonstration sites to implement and evaluate strategies to engage and retain underserved populations living with HIV/AIDS (PLWHA) in HIV primary medical care. The 10 sites were located in urban areas across the United States. Target populations were women, youth, people of color, and people with histories of incarceration, substance use, homelessness, or mental illness. Program interventions included outreach, motivational interventions, case management, and other ancillary services to connect and sustain people in HIV medical care. To evaluate outcomes from this initiative, a multisite study consisting of client interviews administered at 6-month intervals, documentation of program contacts, and medical chart abstractions of CD4 and viral load values and HIV primary care visits was conducted. This paper describes the study design and methods used to implement and evaluate this large multisite initiative. Strengths and limitations of the study design are discussed.

Making the connection: the importance of engagement and retention in HIV medical care.

Despite the availability and proven efficacy of medical treatment, many individuals living with HIV in the United States today are not engaged in regular HIV medical care or receiving antiretroviral medications. This journal supplement highlights results of a national 5-year multisite Outreach Initiative, funded by the Health Resources and Services Administration (HRSA) in 2001 to "engage people in HIV care, turn sporadic users of care into regular users, and promote retention in care." The introductory paper for the supplement provides background information on the characteristics of individuals who are not engaged in regular HIV care, the barriers they face, intervention options, and the public policy implications of this issue. Interventions to engage and retain underserved populations living with HIV in medical care are essential to ensure access to medical care and to reduce disparities in health outcomes.

Factors associated with engaging socially marginalized HIV-positive persons in primary care.

This paper examines factors associated with engaging socially marginalized HIV-positive persons in primary care using interview and chart review data from 984 clients presenting for services at 10 agencies participating in a multisite demonstration project. The sample was predominantly minority, and many reported drug and mental health problems as well as housing instability. At baseline, roughly half of the participants were engaged in HIV primary care; the other participants were either not at all engaged in HIV primary care or somewhat engaged in care. Those who were somewhat engaged in care were very similar to those who were not at all engaged in care, and significantly different than those who were fully engaged in care across a number of demographic, health status/utilization, and barriers to care items and fared equally poorly with regard to engagement in care at 12-month follow-up. In 12-month longitudinal analyses, 58% of those not engaged at baseline ( n = 517) became more fully engaged in care. In the final multivariate model that controlled for disease stage, decreases in drug use, structural barriers, and unmet needs were associated with engagement in care. Interventions that focus on decreasing structural barriers and unmet support services needs, addressing negative health beliefs and attending to drug use are promising public health strategies to engage marginalized HIV-positive persons in HIV primary care.

Retention in care of persons newly diagnosed with HIV: outcomes of the Outreach Initiative.

The purpose of this study was to contribute to the limited literature on newly diagnosed persons living with HIV/AIDS (PLWHA) by describing their retention in HIV primary care and changes in barriers to care over 12 months of follow-up subsequent to enrolling in outreach interventions. Medical chart review and interview data were collected from 104 newly diagnosed PLWHA at baseline, 6-month, and 12-month follow-up. Almost all newly diagnosed PLWHA (92%) had an HIV care appointment in the 6 months post-enrollment. Newly diagnosed persons were more likely to have undetectable viral loads at 6 and 12-month follow-up compared to baseline with 45% undetectable by 12 months. Adequate retention in care (at least one appointment in each 6-month window) was significantly associated with reductions in substance use and improvements in insurance coverage. Improvements in mental health status and the elimination of stigma as a barrier were not associated with retention, but those who reported stigma as a barrier at baseline and continued to report stigma at 6 months had less than adequate retention. These results suggest the need for early and intensive outreach interventions for newly diagnosed persons. Future directions include testing outreach interventions in a randomized clinical trial, and evaluating programs that integrate early HIV identification and intensive outreach to enroll and retain persons newly infected with HIV in care.

Outreach program contacts: do they increase the likelihood of engagement and retention in HIV primary care for hard-to-reach patients?

Engagement in HIV primary care and the receipt of antiretroviral therapy when clinically indicated offers patients the opportunity to experience HIV disease as a chronic illness. Yet many people, particularly those with comorbid mental health or substance abuse conditions and those who face multiple barriers to care, cycle in and out of care and thus can not reap the life-prolonging benefits of antiretroviral therapy. Although there is evidence about the impact of different interventions on adherence to HIV medications, there is little information about the impact of interventions on engagement or retention in HIV primary care among the hard-to-reach. In this multisite, national study, we contribute new information by exploring the relationship between outreach program contacts and retention in care over a 12-month period among participants in a demonstration project to promote engagement and retention in HIV primary care. We found that when participants received nine or more contacts during the first 3 months of their programs, they were about half as likely to have a substantial gap (defined as 4 months or more) in primary care during the first 12 months of follow-up. This finding remained after controlling for baseline CD4 count. These findings can be used to improve the effectiveness of programs to increase engagement and retention in HIV primary care among the hard-to-reach.

Living with HIV but without medical care: barriers to engagement.

This cross-sectional study examined factors associated with the receipt of HIV medical care among people who know their HIV status and are not newly diagnosed with HIV. Interviews were conducted with 1133 HIV-positive individuals between October 2003 and July 2005 who enrolled in 1 of 10 outreach programs across the country. The sample was predominantly non-white (86%), male (59%), and unstably housed (61%), with a past history of cocaine use (68%). Twelve percent had received no HIV medical care in the 6 months prior to the interview. Those with no care were similar to those who received some HIV care in sociodemographic characteristics, but in multivariate analysis were less likely to have a case manager (p < 0.001) or use mental health services (p < .001), had lower mental health status scores (p < 0.05), were more likely to be active drug users (p < 0.01), had greater unmet support service needs (p < 0.05) and reported that health beliefs were a barrier to care (p < 0.001). Interventions to engage people in HIV medical care need to address barriers to care through linkages with mental health, substance abuse treatment and support services, and address the health beliefs that deter people from seeking care.

Ryan White CARE Act Title II survey: services for HIV-positive substance users.

A national survey was conducted among Ryan White CARE Act-funded providers to determine what types of services are specifically provided for HIV-positive substance users through Title II within the context of the overall delivery system for substance abuse treatment services. There was an 87% return rate on questionnaires representing 47 states. Only 18 of the 47 states reported funding some form of substance abuse services. The results show (1) the types of substance abuse services funded under Title II, (2) what special populations are served by those programs, (3) additional funding sources utilized by those programs, (4) the common systemic barriers to care, (5) the greatest programmatic barriers to care, and (6) gaps in knowledge about unmet needs for HIV-positive substance users. Some states have been quite innovative in targeting resources to support HIV-positive substance users while others report less activity. Although design and implementation of innovative programs for HIVpositive substance users rests with service providers, state agencies responsible for Title II planning are in the best position to identify system strengths and weaknesses.

Ryan White Title I Survey: services for HIV-positive substance users.

People living with HIV/AIDS who are also substance users need primary health care, substance abuse treatment, and support services. They also require care delivery strategies that are comprehensive and innovative. Forty-three of 51 Ryan White Care Act Title I grantees funding 197 substance abuse treatment agencies in the United States participated in this study. Grantees were surveyed to determine (1) use of Title I funding to provide services for HIV-positive substance users, (2) the types of substance abuse services provided, (3) strengths and weaknesses of different metropolitan substance abuse service delivery systems, (4) sources of information used to assess the needs of substance users, (5) gaps in knowledge about substance users and their service needs, and (6) examples of successful strategies within the eligible metropolitan areas. The results of the study demonstrate that most grantees use Title I funds to support some form of substance abuse treatment for people with HIV; however, many do not use the funds to address the barriers to care that they identified. Lack of provider knowledge, expertise, and awareness, were cited as important barriers to care by a majority of the grantees. The availability of harm reduction approaches to care is an area in which there is wide variation. Several Title I programs have supported innovative programs for HIV positive substance users that may be used elsewhere as program models. It is important to find ways to incorporate these issues into the needs assessment and service prioritization process.

Benefits for employees with children with ADHD: findings from the Collaborative Employee Benefit Study.

Parents of most children with attention-deficit hyperactivity disorder (ADHD) are employed. Employers have interest in decreasing employee absenteeism and improving workplace productivity, partly through employee benefits. The authors interviewed employers to (1) determine how they view the needs of employees with children with ADHD and (2) identify benefits that might help employees with children with ADHD. The authors carried out a systematic interview study of mainly family-friendly, large employers in four U.S. urban markets (Boston, Cleveland, Miami, Seattle). Multidisciplinary interview teams used a protocol to gather basic company information, benefit philosophy, current insurance and other employee benefits, and knowledge of ADHD and its impacts on employees. Initially, the interview team and then the larger project team reviewed all protocols for common themes. The authors interviewed staff of 41 employers (human resource managers, work/life program directors, benefits directors). Only 15 of 41 interviewees knew about ADHD, its prevalence, or its effects on parents. They had little knowledge of how differences in managed behavioral health may affect families' access to diagnostic and treatment services for ADHD, although most had experience with primary care management of depression among employees. Employers offer a variety of other benefits, including work/life and employee assistance programs, occasionally providing employees help with caring for a child with a mental health condition, on-site parent training programs, or assistance with child care. Other potentially useful employee benefits include flexible work and leave policies and information and referral services that can link parents with community programs. Although employers have limited awareness of ADHD and its potential effect on employees' work, this study identified opportunities to improve both health insurance and other benefits for employees with children with ADHD.

Assuring Adequate Health Insurance for Children With Special Health Care Needs: Progress From 2001 to 2009-2010.

OBJECTIVE: To report on coverage and adequacy of health insurance for children with special health care needs (CSHCN) in 2009-2010 and assess changes since 2001. METHODS: Data were from the National Survey of Children with Special Health Care Needs (NS-CSHCN), a random-digit telephone survey with 40,243 (2009-2010) and 38,866 (2001) completed interviews. Consistency and adequacy of insurance was measured by: 1) coverage status, 2) gaps in coverage, 3) coverage of needed services, 4) reasonableness of uncovered costs, and 5) ability to see needed providers, as reported by parents. Bivariate and multivariable analyses were conducted to assess factors associated with adequate insurance coverage in 2009-2010. Unadjusted and adjusted prevalence estimates were examined to identify changes in the type of insurance coverage and the proportion of CSHCN with adequate coverage by insurance type. RESULTS: The proportion of CSHCN with private coverage decreased from 64.7% to 50.7% between 2001 and 2009-2010, while public coverage increased from 21.7% to 34.7%; the proportion of CSHCN without any insurance declined from 5.2% to 3.5%. The proportion of CSHCN with adequate coverage varied over time and by insurance type: among privately covered CSHCN, the proportion with adequate coverage declined (62.6% to 59.6%), while among publicly covered CSHCN, the proportion with adequate insurance increased (63.0% to 70.7%). Publicly insured CSHCN experienced improvements in each of the 3 adequacy components. CONCLUSIONS: There has been a continued shift from private to public coverage, which is more affordable, offers benefits that are more likely to meet CSHCN needs, and allowed CSHCN to see necessary providers.

Quality oversight in medicaid primary care case management programs.

As health maintenance organizations (HMOs) have curtailed participation in Medicaid, enrollment in primary care case management (PCCM) programs has grown. To examine state Medicaid agencies' monitoring of PCCM and HMO programs, we surveyed Medicaid agency directors of forty-six states and the District of Columbia. Agencies were less likely to collect performance data in PCCM programs than in HMO programs. Few PCCM programs reported performance results for the public or providers. Reporting states tended to emphasize utilization results over quality-measure results. Despite growing enrollment, PCCM programs appear less likely to use the quality-oversight strategies employed by Medicaid health plans.

The evolution of quality management in Medicaid managed care.

Since the early 1990s almost all states have moved some or all of their Medicaid beneficiaries to Medicaid managed care (MMC). Critics have worried about quality since MMC's inception. Proponents argued that state Medicaid agencies, as large-scale purchasers of care, would pursue "value-based purchasing" and other strategies to stimulate quality improvements. In this paper we extend and update previous evaluations of the use of managed care for the Medicaid population, the extent to which beneficiaries receive care from Medicaid only and from commercial health plans, and the quality management programs that state Medicaid agencies supported during 2001.

Analysis of Human Resources and Services Administration-funded services for HIV-positive substance users: a study of Ryan White CARE Act Title III, Title IV, and Special Projects of National Significance providers.

In this study, 175 organizations providing health care and/or social services to HIV-positive substance users responded to a questionnaire to: (1) investigate how programs were configured to serve consumer needs and (2) identify potential innovative strategies to be explored in greater depth in a subsequent study. The results demonstrated wide variability in types of services provided, racial and ethnic diversity, methods of addressing cultural and linguistic needs, accessibility provisions, strategies for engagement and retention, strategies for coordination and integrations of care, most difficult barriers to care, and funding sources.

Dental case manager encounters: the association with retention in dental care and treatment plan completion.

Little is known about dental case managers as few programs have been scientifically evaluated. The goal of this study was to explore the impact of dental case manager on retention in dental care and completion of treatment plans, while specifically exploring the number of dental case manager encounters. Fourteen programs enrolled people with HIV/AIDS (PLWHA) in dental care and a longitudinal study between 2007 and 2009. The 758 participants had a total of 2715 encounters with a dental case manager over twelve months: 29% had a single encounter; 21% had two; 27% had 3-4 and; 23% had 5-29 encounters. Adjusting for baseline characteristics, participants receiving more encounters were significantly more likely to complete their Phase 1 treatment plan, be retained in dental care, and experience improvements in overall oral health status. Organizations considering efforts to improve the oral health of vulnerable, hard-to-engage populations should consider these findings when planning interventions.

Building blocks for peer success: lessons learned from a train-the-trainer program.

The National HIV/AIDS Strategy (NHAS) calls for a reduction in health disparities, a reduction in new HIV infections, and improved retention in HIV care and treatment. It acknowledges that HIV-positive peers can play an important role in supporting these aims. However, peer training must be comprehensive enough to equip peers with the knowledge and skills needed for this work. This article describes the development of a national train the trainer (TTT) model for HIV peer educators, and the results of its implementation and replication. A mixed methods evaluation identified who was trained locally as a result of TTT implementation, what aspects of the TTT were most useful to trainers in implementing local training sessions, and areas for improvement. Over the course of 1 year, 91 individuals were trained at 1 of 6 TTT sessions. These individuals then conducted 26 local training sessions for 272 peers. Factors that facilitated local replication training included the teach-back/feedback model, faculty modeling of facilitation styles, financial support for training logistics, and faculty support in designing and implementing the training. The model could be improved by providing instruction on how to incorporate peers as part of the training team. TTT programs that are easily replicable in the community will be an important asset in developing a peer workforce that can help implement the National AIDS Strategy.

Increasing access to oral health care for people living with HIV/AIDS in rural Oregon.

Access to oral health care for people living with HIV/AIDS is a severe problem. This article describes the design and impact of an Innovations in Oral Health Care Initiative program, funded through the Health Resources and Services Administration HIV/AIDS Bureau's Special Projects of National Significance (SPNS) program, that expanded oral health-care services for these individuals in rural Oregon. From April 2007 to August 2010, 473 patients received dental care (exceeding the target goal of 410 patients) and 153 dental hygiene students were trained to deliver oral health care to HIV-positive patients. The proportion of patients receiving oral health care increased from 10% to 65%, while the no-show rate declined from 40% to 10%. Key implementation components were leveraging SPNS funding and services to create an integrated delivery system, collaborations that resulted in improved service delivery systems, using dental hygiene students to deliver oral health care, enhanced care coordination through the services of a dental case manager, and program capacity to adjust to unanticipated needs.