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.

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.

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.

State health care financing strategies for children with intellectual and developmental disabilities.

We provide the first descriptive summary of selected programs developed to help expand the scope of coverage, mitigate family financial hardship, and provide health and support services that children with intellectual and developmental disabilities need to maximize their functional status and quality of life. State financing initiatives were identified through interviews with family advocacy, Title V, and Medicaid organizational representatives. Results showed that states use myriad strategies to pay for care and maximize supports, including benefits counseling, consumer- and family-directed care, flexible funding, mandated benefits, Medicaid buy-in programs, and Tax Equity and Fiscal Responsibility Act of 1982 funding. Although health reform may reduce variation among states, its impact on families of children with intellectual and developmental disabilities is not yet clear. As health reform is implemented, state strategies to ameliorate financial hardship among families of children with intellectual and developmental disabilities show promise for immediate use. However, further analysis and evaluation are required to understand their impact on family and child well-being.

Increasing access to oral health care for people living with HIV/AIDS in the U.S.: baseline evaluation results of the Innovations in Oral Health Care Initiative.

OBJECTIVES: We provide an overview of the Health Resources and Services Administration HIV/AIDS Bureau's Special Projects of National Significance Innovations in Oral Health Care Initiative, describe the models developed by the 15 demonstration sites and associated evaluation center, and present initial descriptive data about the characteristics of the multisite evaluation study sample. METHODS: Baseline data were collected from May 2007-August 2009 for 2,469 adults living with HIV/AIDS who had been without dental care, except for emergency care, for 12 months or longer. Variables included sociodemographic characteristics, HIV status, medical care, history of dental care and oral health symptoms, oral health practices, and physical and mental health quality of life. Descriptive statistics of baseline variables were calculated. RESULTS: The study sample included 2,469 adults who had been HIV-positive for a decade; most were engaged in HIV care. The majority (52.4%) of patients had not seen a dentist in more than two years; 48.2% reported an unmet oral health-care need since testing positive for HIV, and 63.2% rated the health of their teeth and gums as "fair" or "poor." CONCLUSIONS: This study is the largest to examine oral health care among people living with HIV/AIDS in more than a decade. The need for access to oral health care among members of this HIV-positive patient sample is greater than in the general population, following previous trends. Findings from our study reinforce the necessity for continued federal and statewide advocacy and support for oral health programs targeting people living with HIV/AIDS; findings can be extended to other vulnerable populations.

Retention of people living with HIV/AIDS in oral health care.

OBJECTIVE: We identified factors associated with retention in oral health care for people living with HIV/AIDS (PLWHA) and the impact of care retention on oral health-related outcomes. METHODS: We collected interview, laboratory value, clinic visit, and service utilization data from 1,237 HIV-positive patients entering dental care from May 2007 to August 2009, with at least an 18-month observation period. Retention in care was defined as two or more dental visits at least 12 months apart. We conducted multivariate regression using generalized estimating equations to explore factors associated with retention in care. RESULTS: In multivariate analysis, patients who received oral health education were 5.91 times as likely (95% confidence interval 3.73, 9.39) as those who did not receive this education to be retained in oral health care. Other factors associated with care retention included older age, taking antiretroviral medications, better physical health status, and having had a dental visit in the past two years. Patients retained in care were more likely to complete their treatment plans and attend a recall visit. Those retained in care experienced fewer oral health symptoms and less pain, and better overall health of teeth and gums. CONCLUSIONS: Retention in oral health care was associated with positive oral health outcomes for this sample of PLWHA. The strongest predictor of retention was the receipt of oral health education, suggesting that training in oral health education is an important factor when considering competencies for new dental professionals, and that patient education is central to the development of dental homes, which are designed to engage and retain people in oral health care over the long term.

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.

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.

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.

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.

Does self-report data on HIV primary care utilization agree with medical record data for socially marginalized populations in the United States?

To test whether self-report data agree with medical record data in marginalized, HIV-infected populations, we collected information about HIV primary care visits over a 6-month period from both sources. Patients were drawn from a large study of engagement and retention in care conducted between 2003 and 2005. Self-report data were collected in face-to-face interviews and medical records were extracted using a rigorous, standardized protocol with multiple quality checks. We found poor overall agreement (weighted kappa = 0.36, 95% confidence interval = 0.28, 0.43). Factors associated with disagreement included younger age (adjusted odds ratio for 20 versus 40 years = 1.25, 95% confidence interval = 0.98, 1.60), non-Hispanic black race/ethnicity (adjusted odds ratio for non-Hispanic blacks versus non-Hispanic whites = 1.48, 95% confidence interval = 1.03, 2.13), lower education (adjusted odds ratio for high school education, GED, or less versus some college or college graduate = 1.43, 95% confidence interval = 0.96, 2.13), and substance use (adjusted odds ratio for any illicit drug/heavy alcohol use in the past 6 months versus no use = 1.39, 95% confidence interval = 1.02, 1.90). These findings do not support a conclusion that unconfirmed self-report data of HIV primary care visits are a sufficient substitute for rigorously collected medical record data in studies focusing on marginalized populations. Use of other data sources (e.g., administrative data), use of other self-reported outcome measures that have better concordance with medical records/administrative data (e.g., CD4 counts), or incorporation of rigorous measures to increase reliability of self-report data may be needed. Limitations of this study include the lack of a true gold standard with which to compare self-report data.

Sexual risk behavior and behavior change among persons newly diagnosed with HIV: the impact of targeted outreach interventions among hard-to-reach populations.

The secondary effect of a national, targeted, outreach initiative in reducing sexual risk behavior among newly diagnosed persons living with HIV/AIDS (PLWHA) was examined in the present study. The findings propose an optimal number of outreach program contacts associated with a change in sexual risk behavior. The primary goal of the initiative was to implement and evaluate strategies to engage and retain underserved populations (PLWHA) in HIV primary medical care. Participants from 10 sites nationwide were enrolled in outreach interventions from 2004 to 2005 that were designed to engage and retain hard-to-reach PLWH in care. The study population in the subanalysis performed was predominantly male, people of color, sexual minorities; mean age of 32, and 31% reported no visits to an HIV health provider since testing positive. The study design was prospective and nonrandomized; 116 newly diagnosed individuals reported on unprotected sex at baseline, 6-, and 12-month interviews. The proportion of individuals reporting unprotected sex postintervention was reduced significantly compared to baseline. Postbaseline, individuals were 80% less likely to report unprotected sex. Additionally, individuals with 1-3 program contacts per month were 80 times less likely to report risky sexual behavior compared to those with 2 or less contacts (adjusted odds ratio [AOR] = 0.20). Substantial risk exists for secondary HIV transmission; this study shows the promise of a supplemental intervention to ensure access to HIV care, retention in care, and risk reduction for positives.

Variations in provider capacity to offer accessible health care for people with disabilities.

Since social workers are likely to practice in a range of health care settings, their training focusing on human behavior in the social environment could help providers develop strategies to improve access to care for people with disabilities. In this article, results from a comprehensive survey of providers about access to health care for people with a broad range of disabilities are reported. Results suggest that a minority of providers report difficulty serving people with disabilities. However, dentists and mental health/substance abuse providers are significantly less likely than other providers to report that they provide accessible services to individuals with disabilities. These providers are less likely to report having had training related to mobility impairments, providing mirrors at their facility, having an accessible door, or providing assistance with personal care needs, and are more likely to report that their building poses a barrier for people with disabilities. Social workers are well positioned to take a leadership role in working with providers and patients to improve access to health care for people with disabilities. A social work framework of understanding the individual in a social environment may be the most appropriate perspective for creating innovative strategies for addressing the complex, multidimensional needs of people with disabilities who experience limited access to care.

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.

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.