Disparities in Access to Easy-to-Use Services for Children with Special Health Care Needs

Objectives Families, clinicians and policymakers desire improved delivery of health and related services for children with special health care needs (CSHCN). We analyzed factors associated with ease of use in obtaining such services. We also explored what were specific difficulties or delays in receiving services. By examining data from the National Survey of Children with Special Health Care Needs (NS-CSHCN 2009–2010) and using the revised criteria for “ease of use,” we were able to assess the percentage of parents who reported that their experiences seeking services for their children met those criteria. Methods We performed Chi square tests to examine associations between the independent variables and their relationship to the difficulties or delays assessed in the survey; including: eligibility, availability of services, waiting lists, cost, and access to information. We used logistic regression to determine the association of meeting the “ease of use” criteria with socio-demographic, complexity of need, and access variables. Results Overall, a third of families of CSHCN (35.3 %) encounter difficulties, delays, or frustrations in obtaining health and related services. The lack of access to health and community services in this study fell most heavily on children from racial/ethnic minority backgrounds, those in poverty, and those with complex emotional/behavioral or developmental needs and functional limitations. Conclusions for Practice CSHCN require services from a broad array of providers across multiple systems. Unfortunately, there are certain difficulties that hamper the accessibility of these systems. These findings underscore the need for both practice-level response and systems-level reform to ensure equitable distribution of health and community resources.     

Synergies,strengths and challenges: findings on community capability from a systematic health systems research literature review

Background

Community capability is the combined influence of a community’s social systems and collective resources that can address community problems and broaden community opportunities. We frame it as consisting of three domains that together support community empowerment: what communities have; how communities act; and for whom communities act. We sought to further understand these domains through a secondary analysis of a previous systematic review on community participation in health systems interventions in low and middle income countries (LMICs).

Methods

We searched for journal articles published between 2000 and 2012 related to the concepts of “community”, “capability/participation”, “health systems research” and “LMIC.” We identified 64 with rich accounts of community participation involving service delivery and governance in health systems research for thematic analysis following the three domains framing community capability.

Results

When considering what communities have, articles reported external linkages as the most frequently gained resource, especially when partnerships resulted in more community power over the intervention. In contrast, financial assets were the least mentioned, despite their importance for sustainability. With how communities act, articles discussed challenges of ensuring inclusive participation and detailed strategies to improve inclusiveness. Very little was reported about strengthening community cohesiveness and collective efficacy despite their importance in community initiatives. When reviewing for whom communities act, the importance of strong local leadership was mentioned frequently, while conflict resolution strategies and skills were rarely discussed.Synergies were found across these elements of community capability, with tangible success in one area leading to positive changes in another. Access to information and opportunities to develop skills were crucial to community participation, critical thinking, problem solving and ownership. Although there are many quantitative scales measuring community capability, health systems research engaged with community participation has rarely made use of these tools or the concepts informing them. Overall, the amount of information related to elements of community capability reported by these articles was low and often of poor quality.

Conclusions

Strengthening community capability is critical to ensuring that community participation leads to genuine empowerment. Our simpler framework to define community capability may help researchers better recognize, support and assess it.

     

Association of Maternal Depressive Symptoms and Offspring Physical Health in Low-Income Families

Objectives The present study sought to examine the association between maternal depressive symptoms and characteristics of offspring physical health, including health status, health behaviors, and healthcare utilization, among low-income families. Maternal engagement was explored as a mediator of observed effects. Methods Cross-sectional survey data from a community sample of 4589 low-income women and their preschool-age children participating in the WIC program in Los Angeles County were analyzed using logistic, Poisson, and zero-inflated negative binomial regression. Mediation was tested via conditional process analyses. Results After controlling for the effects of demographic characteristics including maternal health insurance coverage, employment status, education, and preferred language, children of depressed women (N?=?1025) were significantly more likely than children of non-depressed women (N?=?3564) to receive a “poor” or “fair” maternal rating of general health (OR 2.34), eat fewer vegetables (IRR: 0.94) more sweets (IRR: 1.20) and sugary drinks daily (IRR: 1.32), and consume fast food more often (OR 1.21). These children were also less likely to have health insurance (OR 1.59) and more likely to receive medical care from a public medical clinic or hospital emergency room (OR 1.30). Reduced maternal engagement partially mediated associations between maternal depressive symptoms and several child health outcomes including poor diet, health insurance coverage, and use of public medical services. Conclusions for Practice Maternal depressive symptoms are associated with poor health among preschool-age children in low-income families. Prevention, screening, and treatment efforts aimed at reducing the prevalence of maternal depression may positively affect young children’s health.     

Factors Associated with Ease of Using Community-Based Systems of Care for CSHCN in Hawai’i

Objectives: To study factors contributing to difficulty using community-based services by families of children with special health care needs (CSHCN) in Hawai’i. Methods: Data source was the 2001 National Survey of Children With Special Health Care Needs. The study population included the 449 respondents who were surveyed after additional items were added to the original questionnaire. Outcome of interest was “% of CSHCN whose families report community-based service systems are organized so they can use them easily.” Explanatory variables included child health conditions (functional limitation, degree of severity, types of service needs), child and family characteristics (child age, maternal education, poverty level), and health services characteristics (partnership of family in decision making, family-centered coordinated care, adequate health insurance). Results: Children with special health care needs comprised 11.0% of < 18 years old children. Overall, 69% of respondents reported that community-based services could be used easily. Logistic regression analysis showed that the odds of reporting difficulties in using community-based services were almost 5 times higher for families who did not partner in decision making, 2.9 times higher for families who did not receive family-centered coordinated care, and 2.7 times higher for families who did not have adequate health insurance compared with families who were satisfied with the care received. Need for services contributed independently to reporting difficulties in community-based service use. Contrary to the hypothesized associations, severe health conditions or limited functionality did not contribute significantly to reporting difficulties in service use. Conclusions: Families who reported difficulties in using community-based services were those who have children who need extensive and varied services. Lack of involvement in decision making, lack of coordinated care in a medical home, and insufficient health insurance were the main obstacles to their ability to use community-based services easily.     

Impact of Caring for Children with Special Health Care Needs on the Family: Rhode Island’s Experience

Objectives: The impact of caring for children with special health care needs (CSHCN) on their families’ finances and employment was studied. Methods: Data from the 2001 National Survey of Children with Special Health Care Needs were used to measure financial and employment problems. The level of impact was examined by child’s age, gender, ethnicity, race, mother’s education, poverty status, and severity of the child’s condition. The association between core outcome measures and the level of family impact was determined after adjusting for potential confounding factors. Results: Financial or employment problems were more likely to occur among families with young children, with incomes below 200% poverty and with children whose condition usually/always affected their activities. Compared to families without these problems, impacted families were less likely to partner in decision making, be satisfied with services, receive comprehensive care in a medical home, have adequate health insurance, and feel service systems are organized for easy use. Conclusions: Many families of CSHCN face financial and employment problems and are less likely to have a medical home, adequate insurance, and access to health care services.     

Caring for Children with Special Health Care Needs: Profiling Pediatricians and Their Health Care Resources

Background and Objectives Pediatricians face numerous challenges in providing care for children with special health care needs (CSHCN). Few studies have described health care resources available to support pediatricians to care for CSHCN. This study investigated available resources to care for CSHCN and factors associated with having a greater proportion of CSHCN in practice. Methods We conducted a statewide survey of active members of the American Academy of Pediatrics in California to study pediatric subspecialty care access, community and office resources and practice barriers. We performed a logistic regression model on having an “above average proportion” of CSHCN in practice, adjusting for demographics, practice type (rural vs. suburban/urban) and medical resources, care satisfaction, and ease of subspecialty access. Results Our response rate was 50.2% (n?=?1290); 75% of respondents reported providing some primary care services, with many primary care pediatricians caring for a high proportion of CSHCN. Pediatricians reported an average of 28% CSHCN in their practices. Rural pediatricians lacked subspecialty access (10–59% reporting no access to the various subspecialties). Factors relating to higher CSHCN in practice included being in academic medical centers and satisfaction in caring for CSHCN. Conclusions Pediatricians report lack of access to mental health services, care coordination and case management. Academic medical centers and higher physician satisfaction in care delivery for CSHCN are associated with more CSHCN in practice. Promoting ways to support pediatricians, such as practice collaboration with behavioral specialists, may be necessary to encourage primary care pediatricians to provide medical homes for CSHCN.     

The use of a lot quality assurance sampling methodology to assess and manage primary health interventions in conflict-affected West Darfur,Sudan

Background

Organizations working in conflict-affected areas have a need to monitor and evaluate their programs, however this is often difficult due to the logistical challenges of conflict areas. Lot quality assurance sampling may be a suitable method of assessing programs in these situations.

Methods

We conducted a secondary data analysis of information collected during Medair’s routine program management functions. Medair’s service area in West Darfur, Sudan was divided into seven supervisory areas. Using the available population information, a sampling frame was developed and interviews were conducted from randomly selected caretakers of children in each supervisory area every six months over 19 months. A survey instrument with questions related to key indicators for immunizations and maternal, newborn, and child health was used for the interviews. Based on Medair’s goals for each indicator, decision rules were calculated for the indicators; these decision rules determined which supervisory areas and indicators performed adequately in each assessment period. Pearson’s chi-squared tests, adjusted for the survey design using STATA “svy: tab” commands, were used to detect overall differences in coverage in this analysis.

Results

The coverage of tetanus toxoid vaccination among pregnant women increased from 47.2 to 69.7 % (p value?=?0.046), and births attended by a skilled health professional increased from 35.7 to 52.7 % (p value?=?0.025) from the first to last assessment periods. Measles vaccinations declined from 72.0 to 54.1 % (p value?=?0.046). The estimated coverage for the proportion of women receiving a postpartum dose of vitamin A (54.7 to 61.3 %, p value?=?0.44); pregnant women receiving a clean delivery kit (54.6 to 47.1 %, p value?=?0.49); and pentavalent vaccinations (49.7 to 42.1 %, p value?=?0.28) did not significantly change.

Conclusions

Lot quality assurance sampling was a feasible method for Medair staff to evaluate and optimize primary health programs in a conflict-affected area. Medair managers were able to collect, analyze, and disseminate data to staff alongside the routine work of the organization. These results suggest LQAS may be used in other complex humanitarian emergencies in which there are logistical challenges and limited resources.

     

“Top Performing” US Hospitals and the Health Status of Counties they Serve

This study (a) examined the relationships between “top performing” US hospitals and the health status of counties they serve and (b) compared the health status of “top performing” US hospital counties versus that of remaining US counties. Statistical analyses considered US News and World Report Honor Roll ranking data, as a measure of hospital performance, and County Health Rankings (CHR) data, as a measure of county health status. “Top performing” hospital Honor Roll scores were correlated with measures of Clinical Care (p?<?0.001). Counties with “top performing” US hospitals presented greater health status with regard to All Health Outcomes (p?<?0.001), Length of Life (p?<?0.001), Quality of Life (p?<?0.001), All Health Factors (p?<?0.001), Health Behaviors (p?<?0.001), and Clinical Care (p?<?0.001), than compared to remaining US counties. Hospital impact on county health status remains primarily recognized in clinical care and not in overall health. Also, counties that contain a “top performing” US hospital tend to present lower health risks to their citizens than compared to other US counties.     

Exploring Preconception Care: Insurance Status,Race/Ethnicity,and Health in the Pre-pregnancy Period

Objective To measure the association of preconception health insurance status with preconception health among women in New York City, and examine whether this association is modified by race/ethnicity. Methods Using data from the New York City Pregnancy Risk Assessment Monitoring System 2009–2011 (n?=?3929), we created a “Preconception Health Score” (PHS) capturing modifiable behaviors, healthcare services utilization, pregnancy intention, and timely entry into prenatal care. We then built multivariable logistic regression models to measure the association of PHS with health insurance status and race/ethnicity. Results We found PHS to be higher among women with private insurance (7.3?±?0.07) or public insurance (6.3?±?0.08) before pregnancy than no insurance (5.9?±?0.09) (p?<?.001). However, when stratified by race/ethnicity, the positive association of PHS with insurance was absent in the non-white population. Conclusions for Practice Having health insurance during the pre-pregnancy period is associated with greater health among white women, but not among black or Hispanic women in NYC.     

Ensuring Implementation Fidelity of a 10-Week Home Visiting Program in Two Randomized Clinical Trials

Introduction Implementation fidelity is a challenge for the adoption of evidence-based programs within social service broadly and child welfare specifically. However, implementation fidelity is critical for maintaining the integrity of clinical trials and for ensuring successful delivery of services in public health settings. Methods Promoting First Relationships ^® (PFR), a 10-week home visiting parenting intervention, was evaluated in two randomized clinical trials with populations of families in child welfare. Seven providers from community agencies participated in the trials and administered PFR. Fidelity data collected included observational measures of provider behavior, provider records, and input from clients to assess training uptake, adherence to content, quality of delivery, program dosage, and participant satisfaction. Results In mock cases to assess training uptake, providers demonstrated an increase in PFR verbalization strategies and a decrease non-PFR verbalizations from pre to post PFR training, and overall this was maintained a year later (Mann–Whitney U’s?=?0, p’s?<?.01). Adherence to content in actual cases was high, with M?=?97% of the program elements completed. Quality of delivery varied across providers, indicated by PFR consultation strategies (Wilks’ Lambda F?=?18.24, df?=?15, p?<?.001) and global ratings (F?=?13.35, df?=?5, p?<?.001). Program dosage was high in both trials (71 and 86% receiving 10 sessions), and participant satisfaction was high (M?=?3.9, SD?=?0.2; 4?=?greater satisfaction). Discussion This system of training and monitoring provides an example of procedures that can be used effectively to achieve implementation fidelity with evidence-based programs in social service practice.     

Evaluation of a Comprehensive Oral Health Services Program in School-Based Health Centers

Objectives In 2011, the Maternal and Child Health Bureau, within the Health Resources and Services Administration, awarded a 4-year grant to increase access to and assure the delivery of quality oral health preventive and restorative services to children. The grant was awarded to organizations serving high-need communities through school-based health centers (SBHCs). This article describes an independent evaluation investigating program efficacy, integration, and sustainability. Methods Program process and outcomes data were gathered from interim and final reports. Interviews with key informants were conducted by phone, and analyzed in NVivo qualitative software. Results Students had great need for comprehensive services: on average, 45% had dental caries at enrollment. Enrollment increased from 5000 to more than 9700, and the percent receiving preventive services increased from 58 to 88%. Results of the analytically weighted linear regression show statistically significant increases in the proportion of enrollees who had their teeth cleaned in the past year (t(4)?=?5.19, β?=?8.85, p?<?0.05) and those receiving overall preventive services (t(4)?=?13.52, β?=?10.93, p?<?0.01). Grantees integrated into existing programs using clear, consistent, and open communication. Grantees sustained the full suite of services beyond the grant period by increasing billing and insurance claims while still offering free and reduced-cost services to those uninsured or otherwise unable to pay. Conclusions for Practice This project demonstrates that access to comprehensive oral health care for children can be expanded through SBHCs. State Title V Block Grant and other similar federal initiatives can learn from the strategic approaches used to overcome challenges in the school-based environment.     

Barriers Faced by the Health Workers to Deliver Maternal Care Services and Their Perceptions of the Factors Preventing Their Clients from Receiving the Services: A Qualitative Study in South Sudan

Objective The study objective was to explore challenges and barriers confronted by maternal and child healthcare providers to deliver adequate quality health services to women during antenatal care visits, facility delivery and post-delivery care. Methods We conducted 18 in-depth-interviews with maternal and child health professionals including midwives/nurses, trained traditional birth attendants (TBAs), gynecologists, and pediatricians in three public health facilities in Juba, South Sudan. We purposively selected these health professionals to obtain insights into service delivery processes. We analyzed the data using thematic analysis. Results Limited support from the heath system, such as poor management and coordination of staff, lack of medical equipment and supplies and lack of utilities such as electricity and water supply were major barriers to provision of health services. In addition, lack of supervision and training opportunity, low salary and absence of other forms of non-financial incentives were major elements of health workers’ de-motivation and low performance. Furthermore, security instability as a result of political and armed conflicts further impact services delivery. Conclusions for Practice This study highlighted the urgent need for improving maternal and child healthcare services such as availability of medical supplies, equipment and utilities. The necessity of equal training opportunities for maternal and child healthcare workers at different levels were also stressed. Assurance of safety of health workers, especially at night, is essential for providing of delivery services.     

Language bias and self-rated health status among the Latino population: evidence of the influence of translation in a wording experiment

Purpose

This research uses a translation experiment to assess the Spanish translation of the “fair” response in the self-rated health measure among a representative study of the Latino population in the USA.

Methods

Using a unique Latino-specific survey (n = 1200), researchers built in a split sample approach in the self-rated health status measure where half of the Spanish-speaking respondents (n = 600) were randomly given “regular” and the other half were given “Mas o Menos” in translating the English “fair” response. We first estimate a logistic regression model to estimate differences across language categories on the probability of reporting poor and fair health and then estimate a multinomial logistic regression to test whether respondents who took the survey in Spanish and given “regular” are more likely to rate their health as fair compared to English speakers and Spanish-speaking respondents who are given the “Mas o Menos” version.

Results

From our logistic regression model, we find that Spanish-speaking respondents given the “regular” response are more likely to report poor health relative to English-speaking respondents and Spanish-speaking respondents who were randomly given “Mas o Menos.” The results from our multinomial logistic models suggest that Spanish respondents provided with “Mas o Menos” are more likely to rate their health as good relative to the base category of fair and relative to both English and Spanish speakers given “regular.”

Conclusion

This research informs the study of racial and ethnic disparities by providing a detailed explanation for mixed findings in the Latino health disparities literature. Researchers interested in self-rated health should translate the general self-rated health option “fair” to “Mas o Menos” as our wording experiment suggests that the current wording “regular” overinflates the reporting of poor health.

     

Effect of a Best Practice Alert on Gestational Weight Gain,Health Services,and Pregnancy Outcomes

Objective To examine whether an electronic medical record “best practice alert” previously shown to improve antenatal gestational weight gain patient education resulted in downstream effects on service delivery or patient health outcomes. Methods This study involved secondary analysis of data from an intervention to improve provider behavior surrounding gestational weight gain patient education. Data were from retrospective chart reviews of patients who received care either before (N = 333) or after (N = 268) implementation of the intervention. Pre-post comparisons and multivariable logistic regression were used to analyze downstream effects of the intervention on health outcomes and obesity-related health services while controlling for potential confounders. Results The intervention was associated with an increase in the proportion of prenatal patients who gained weight within Institute of Medicine guidelines, from 28 to 35 % (p < .05). Mean total gestational weight gain did not change, but variability decreased such that post-intervention women had weight gains closer to their gestational weight gain targets. The intervention was associated with a 94 g decrease in mean infant birth weight (p = .03), and an increase in the proportion of overweight and obese women screened for undiagnosed Type 2 diabetes before 20 weeks gestation, from 13 to 25 % (p = .01). Conclusions for Practice The electronic medical record can be leveraged to promote healthy gestational weight gain and early screening for undiagnosed Type 2 diabetes. Yet most patients still need additional support to achieve gestational weight gain within Institute of Medicine guidelines.     

Obstetric Provider Maldistribution: Georgia,USA, 2011

Objectives In 2010, Georgia had the nation’s highest maternal mortality rate, sixteenth highest infant mortality rate, and a waning obstetrician/gynecologist (ob/gyn) workforce. Statewide ob/gyn workforce data, however, masked obstetric-specific care shortages and regional variation in obstetric services. The Georgia Maternal and Infant Health Research Group thereby assessed each Georgia region’s obstetric provider workforce to identify service-deficient areas. Methods We identified 63 birthing facilities in the 82 Primary Care Service Areas (PCSAs) outside metropolitan Atlanta and interviewed nurse managers and others to assess the age, sex, and expected departure year of each delivering professional. Using accepted annual delivery rates of 155 per obstetrician (OB), 100 per certified nurse midwife (CNM), and 70 per family medicine physician (FP) we converted obstetric providers into “OB equivalents” to standardize obstetric services available in any given area. Using facility births and computed OB equivalents (contemporary and 2020 estimates), we calculated current and projected average annual births per provider (AABP) for each PCSA, categorizing its obstetric provider workforce as “adequate” (AABP < 144), “at risk” (144 ≤ AABP ≤ 166), or “deficient” (AABP > 166). We mapped results using ArcGIS. Results Of 82 surveyed PCSAs, 52 % (43) were deficient in obstetric care; 16 % (13) had a shortage and 37 % (30) lacked obstetric providers entirely. There were no delivering FPs in 89 % (73) of PCSAs and no CNMs in 70 % (56). If Georgia fails to recruit delivering providers, 72 % (58/77) of PCSAs will have deficient or no obstetric care by 2020. Conclusions Obstetric provider shortages in Georgia hinder access to prenatal and delivery services. Care-deficient areas will expand if recruitment and retention of delivering professionals does not improve.     

A Data Driven Process in Washington State to Improve Systems of Care for Children With Special Health Care Needs: The National Survey of CSHCN

Objectives: The purpose of this article is to present strategies used in one state to engage public health stakeholders in the use of National Survey of Children With Special Health Care Needs (NS-CSHCN) results to improve systems of care for children with special health care needs (CSHCN). This is not a research report. Methods: Seven “CSHCN Road Shows” were conducted with 39 local health departments, five state agencies, five parent leaders, three managed health care plans, and 12 school nurses. These “CSHCN Road Shows” were used to present and validate Washington State findings from the NS-CSHCN, obtain input on additional topics for analysis and elicit ways of incorporating NS-CSHCN results into the state’s MCH Five Year Needs Assessment. Results: Overall, a majority of stakeholders reported a high level of interest in using state-level data from the NS-CSHCN for local community efforts. Uses included program planning, presenting data to local boards of health and other community agencies, and utilizing results as talking points with other partners on the needs and unmet needs of the population. The state Title V office used feedback from “CSHCN Road Show” participants to prioritize program-planning activities, initiate policy discussions, and incorporate feedback into the MCH Five Year Needs Assessment. Conclusions: State-level data from the NS-CSHCN are a rich source of information for driving improvements in systems of care, facilitating state and local program planning efforts, writing grants, and completing MCH Five Year Needs Assessment activities.