MEETING THE NEEDS OF HANDICAPPED CHILDREN: A STUDY OF EDUCATIONAL AND HEALTH CARE SERVICES PROVIDED TO PRE-KINDERGARTEN CHILDREN IN THE HOUSTON INDEPENDENT SCHOOL DISTRICT EARLY CHILDHOOD PROGRAM FOR THE HANDICAPPED (PARENT SATISFACTION, FUNCTIONAL STATUS, PSYCHOSOCIAL DEVELOPMENT)

The Education for All Handicapped Children Act of 1975, P.L. 94-142, created a new challenge for the nation's public school systems. During 1982-1983, a national study, called the "Collaborative Study of Children with Special Needs", was conducted in 5 metropolitan school districts to evaluate the effectiveness of education and health care services of children in kindergarten to 6th grade being provided under P.L. 94-142 programs. This dissertation (the Substudy) was undertaken to augment the findings of the Collaborative Study. The purpose of this study was to develop a database to provide descriptive information on the demographic, service and health characteristics of a small group of 3 and 4 year old handicapped children served by the Houston Independent School District (HISD) during 1982-1983.^ The study involved a stratified sample of 105 three and four year old children divided into 3 groups according to type of handicapping condition.^ The results of the study gave a clearer picture of the demographic characteristics of these Pre-K children. Specifically, sex ratio was approximately one, lower than the national norm. Family and socioeconomic characteristics were assessed.^ The study used an independence/dependence index composed of 11 items on the parent questionnaire to assess the level of functional independence of each child. An association was found between index scores and parent-reported effects of the child on family activity. Parents who said that their child's condition had affected the family's job situation, housing accomodations, vacation plans, marriage, choice of friends and social activities were also more likely to report less independence in the child. In addition, many of the Substudy children had extensive care-taking needs reflected in specific components of the index such as dressing, feeding, toileting or moving about the house.^ In general the results of the Pre-K Substudy indicate that at the early childhood level, the HISD special education program is functioning well in most areas and that parents are very satisfied with the program. (Abstract shortened with permission of author.)^

AN ECONOMIC ANALYSIS OF THE DEMAND FOR CARE IN A FREE-STANDING EMERGENCY CENTER

Free-standing emergency centers (FECs) represent a new approach to the delivery of health care which are competing for patients with more conventional forms of ambulatory care in many parts of the U.S. Currently, little is known about these centers and their patient populations. The purpose of this study, therefore, was to describe the patients who visited two commonly-owned FECs, and determine the reasons for their visits. An economic model of the demand for FEC care was developed to test its ability to predict the economic and sociodemographic factors of use. Demand analysis of other forms of ambulatory services, such as a regular source of care (RSOC), was also conducted to examine the issues of substitution and complementarity.^ A systematic random sample was chosen from all private patients who used the clinics between July 1 and December 31, 1981. Data were obtained by means of a telephone interview and from clinic records. Five hundred fifty-one patients participated in the study.^ The typical FEC patient was a 26 year old white male with a minimum of a high school education, and a family income exceeding $25,000 a year. He had lived in the area for at least twenty years, and was a professional or a clerical worker. The patients made an average of 1.26 visits to the FECs in 1981. The majority of the visits involved a medical complaint; injuries and preventive care were the next most common reasons for visits.^ The analytic results revealed that time played a relatively important role in the demand for FEC care. As waiting time at the patients' regular source of care increased, the demand for FEC care increased, indicating that the clinic serves as a substitute for the patients' usual means of care. Age and education were inversely related to the demand for FEC care, while those with a RSOC frequented the clinics less than those lacking such a source.^ The patients used the familiar forms of ambulatory care, such as a private physician or an emergency room in a more typical fashion. These visits were directly related to the age and education of the patients, existence of a regular source of care, and disability days, which is a measure of health status. ^

Global practice experience: A useful lens for understanding patient and staff perceptions of successful integration of health information technology in primary care

Making healthcare comprehensive and more efficient remains a complex challenge. Health Information Technology (HIT) is recognized as an important component of this transformation but few studies describe HIT adoption and it's effect on the bedside experience by physicians, staff and patients. This study applied descriptive statistics and correlation analysis to data from the Patient-Centered Medical Home National Demonstration Project (NDP) of the American Academy of Family Physicians. Thirty-six clinics were followed for 26 months by clinician/staff questionnaires and patient surveys. This study characterizes those clinics as well as staff and patient perspectives on HIT usefulness, the doctor-patient relationship, electronic medical record (EMR) implementation, and computer connections in the practice throughout the study. The Global Practice Experience factor, a composite score related to key components of primary care, was then correlated to clinician and patient perspectives. This study found wide adoption of HIT among NDP practices. Patient perspectives on HIT helpfulness on the doctor-patient showed a suggestive trend that approached statistical significance (p = 0.172). Clinicians and staff noted successful integration of EMR into clinic workflow and their perception of helpfulness to the doctor-patient relationship show a suggestive increase also approaching statistical significance (p=0.06). GPE was correlated with clinician/staff assessment of a helpful doctor-patient relationship midway through the study (R 0.460, p = 0.021) with the remaining time points nearing statistical significance. GPE was also correlated to both patient perspectives of EMR helpfulness in the doctor-patient relationship (R 0.601, p = 0.001) and computer connections (R 0.618, p = 0.0001) at the start of the study. ^

Family Preservation: The Parents’ Perceptions

This research documents the perspective of 100 parents who had an open case with the Department of Children and Family Service’s (DCFS) regarding their family’s well-being, reasons for referral and satisfaction with services. Two DCFS services, Family Preservation (FP) and routine Family Maintenance (FM) were examined using standardized instruments. Parents’ responses regarding reasons for involvement with the system differed from DCFS administrative data. FP parents had more children, were more likely to be monolingual Spanish speakers, and perceived greater improvement in discipline and emotional care of children and housing than FM parents. FP parents reported being satisfied with services. Implications include supporting community based culturally competent FP programs.

Are Intensive Family Preservation Services Useful?: A Study in the United Kingdom

This evaluation of the first year of an Intensive Family Preservation Service in England is based on the analysis of eighty-six families: fifty-seven families who received the service and a comparison group of twenty-nine families who did not. The study considered whether the program was fulfilling its objectives of reducing the number of children and young people in the public care system; offering a safe, supportive service for children who need protection; integrating the program into family support services as a whole, and improving family functioning. The findings were complex to interpret. Child protection was improved but there was not a reduction in the number of children needing out of home care (indeed there was an increase) meaning that short term savings in costs could not be made. Nor were there lasting improvements in the children’s behavior. There were instead a number of more subtle, arguably more sensitive outcomes: parents’ capacity to tolerate their child’s behavior was greater and overall family functioning was better for most families who received the service. Also families were, on the whole, able to make better use of follow up services.

Promoting Family Continuity - Perspectives from Italy

In this essay I review a recent research study from Italy, “Le Radici nel Futuro – La Continuita’ della Relazione Genitoriale oltre la Crisi Familiare,” edited by Paola Dallanegra (2005). The contributors focus on “Spazio Neutro,” a multi-purpose child welfare agency in southern Italy that facilitates parent-child visiting and relationships between children placed in out-of-home care and their families. They delineate and illustrate, through comments from family members, selected principles and strategies for maintaining such continuity throughout the out-of-home placement.

Let their voices be heard: Understanding the barriers to seeking early prenatal care for low-income non-Hispanic Black women

Background: Receipt of early prenatal care, care during the first three months of pregnancy, is the standard in the United States. Sixty percent of non-Hispanic Black women who had a live birth in the Sunnyside community of Houston did not obtain early prenatal care in 2009. ^ This study's aims were to: 1) Describe the barriers to obtaining early prenatal care in non-Hispanic Black women who live in the Sunnyside community of Houston; and, 2) Describe the actions that could encourage non-Hispanic Black women who live in the Sunnyside Community to obtain early prenatal care. The goal was to provide information to organizations that promote early prenatal care use in non-Hispanic Black women in Harris County that may aid in developing interventions. ^ Methods: The Participatory Learning for Action rapid assessment qualitative method was used in a group setting to answer the research questions on behalf of women in the community. Women who participated in the group sessions also participated in an in-depth interview. Key informants who work in the community with pregnant women, or promote the use of prenatal care services, were also interviewed. An inductive analysis of the data was conducted to identify common themes that address the study's aims. ^ Results: Aim 1: Group participants identified fear of the reaction from family and/or the baby's daddy and shame, not having insurance or money, and lack of knowledge of the pregnancy and resources as the top three barriers to early prenatal care for women in the community. Aim 2: Group participants stated that to help women to overcome these barriers, communication, awareness and support; help, resources and services; and information and early education are needed. Participant in-depth interviewees echoed the themes of fear of the reaction from family and/or the baby's daddy and not knowing of the pregnancy. Key informants mentioned these themes as well, though not at the same priority level. Participants and key informants also mentioned similar themes for helping women to overcome barriers to early prenatal care. ^ Conclusion: A comprehensive approach is needed to improve early prenatal care use in the Sunnyside community. Education efforts must include all members of the community, young and old, to promote support for pregnant women. Community members must be a part of the process for developing education campaigns. Engaging the community builds a relationship with organizations that serve the community, which may promote use of the organizations' services, and build trust with the community. All efforts must be ongoing so that women and men of all ages in the community understand the importance of prenatal care and support women obtaining care early in the pregnancy.^

Targeting Special Populations for Family Preservation: The Influence of Worker Competence and Organizational Culture

Today there are approximately 581,000 children in the United States foster care system. Children of color, one special population group, are disproportionately represented in the foster care system. Family preservation, a program that aims to improve family functioning and thus decrease the need for foster care, has been examined closely. Some researchers believe that family preservation programs have failed partly due to practitioners' inability to target appropriate families (Feldman, 1990; Schuerman, Rzepnicki & Littell, 1994). Additionally, research confirms that children of color are not the target of family preservation services (Denby, Curtis, & Alford, 1998). Improvements in the effectiveness of family preservation will require many types of reform both internal and external to the program. Among the types of internal reform needed is accurate "targeting of services. " Given the overrepresentation of children of color in the foster care system, this group must be among those who are targeted for services. The results of a national survey of 254 family preservation workers reveal a "profile" of the worker who is likely to target special populations, including children of color, for family preservation services. A case is made for service improvements and training to facilitate the "profiled" workers' competencies.

Supporting Families through Short-Term Foster Care: An Essay Review

Aldgate, J. and Bradley, M. (1999). Supporting families through short-term fostering. London: The Stationery Office. This essay reviews a British qualitative study of short-term foster care from the perspectives of birth parents, children, foster parents, and social workers. Respondents highlighted the value of short-term foster care as a family support service and also offered many recommendations for improving service delivery. The study provides useful implications for restructuring child welfare services in the United States and for promoting cross-national collaboration in future research activities in the area of child and family services.

Family Preservation Journal, 2002, Volume 6, Issue 2. (Entire issue)

Entire issue (large pdf file) Articles include: Applying the Strengths Perspective to Increase Safety and Well-Being: Views from Families and Providers. Diane DePanfilis, Joshua Okundaye, Esta Glazer-Semmel, Lisa Kelly, and Joy Swanson Ernst Changing Tides and Changing Focus: Mapping the Challenges and Successes of One State's Implementation Of the Adoption and Safe Families Act of 1997. Scottye J. Cash, Scott D. Ryan, and Alison Glover Promising Practices to Engage Families and Support Family Preservation. Marianne Berry Implementing Intensive Family Preservation Services: A Case of lnfidelity. Raymond S. Kirk, Kellie Reed-Ashcrafi, and Peter J. Pecora Supporting Families through Short-Term Foster Care: An Essay Review. Anthony Maluccio Failed Child Welfare Policy: An Essay Review. Anthony Maluccio

Preserving Family: Themes from a Qualitative Study of Kin Caregivers

This article presents themes from a qualitative study of 58 African American female kinship caregivers in San Francisco. Core concepts that emerged describe various paths along which children move into kin homes, and caregivers' mixed emotional reactions to becoming surrogate parents. Women also discussed multiple family roles they assumed after taking in children. Responses highlight three primary reasons for becoming caregivers that center on providing for and protecting these children—particularly from the perceived threat of the public foster care system—and ultimately preserving the family unit. Paradoxically, caregivers' reasons mirror the stated goals of the public foster care system, which they view as a threat to family stability. We discuss the problems of implementing practice and policy recommendations for permanency and family preservation and how to bridge the gap between the deeply held negative beliefs of African American caregivers towards the public system and begin to build trust.

Intensive care unit utilization among patients with cancer at the end of life

Over the last 2 decades, survival rates in critically ill cancer patients have improved. Despite the increase in survival, the intensive care unit (ICU) continues to be a location where end-of-life care takes place. More than 20% of deaths in the United States occur after admission to an ICU, and as baby boomers reach the seventh and eighth decades of their lives, the volume of patients in the ICU is predicted to rise. The aim of this study was to evaluate intensive care unit utilization among patients with cancer who were at the end of life. End of life was defined using decedent and high-risk cohort study designs. The decedent study evaluated characteristics and ICU utilization during the terminal hospital stay among patients who died at The University of Texas MD Anderson Cancer Center during 2003-2007. The high-risk cohort study evaluated characteristics and ICU utilization during the index hospital stay among patients admitted to MD Anderson during 2003-2007 with a high risk of in-hospital mortality. Factors associated with higher ICU utilization in the decedent study included non-local residence, hematologic and non-metastatic solid tumor malignancies, malignancy diagnosed within 2 months, and elective admission to surgical or pediatric services. Having a palliative care consultation on admission was associated with dying in the hospital without ICU services. In the cohort of patients with high risk of in-hospital mortality, patients who went to the ICU were more likely to be younger, male, with newly diagnosed non-metastatic solid tumor or hematologic malignancy, and admitted from the emergency center to one of the surgical services. A palliative care consultation on admission was associated with a decreased likelihood of having an ICU stay. There were no differences in ethnicity, marital status, comorbidities, or insurance status between patients who did and did not utilize ICU services. Inpatient mortality probability models developed for the general population are inadequate in predicting in-hospital mortality for patients with cancer. The following characteristics that differed between the decedent study and high-risk cohort study can be considered in future research to predict risk of in-hospital mortality for patients with cancer: ethnicity, type and stage of malignancy, time since diagnosis, and having advance directives. Identifying those at risk can precipitate discussions in advance to ensure care remains appropriate and in accordance with the wishes of the patient and family.^

Improving disclosure of medical errors: Including patients and family members in the disclosure process

Over the last decade, adverse events and medical errors have become a main focus of interest for the standards of quality and safety in the U.S. healthcare system (Weinstein & Henderson, 2009). Particularly when a medical error occurs, the disclosure of medical errors and its practices have become a focal point of the healthcare process. Patients and family members who have experienced a medical error might be able to provide knowledge and insight on how to improve the disclose process. However, patient and family member are not typically involved in the disclosure process, thus their experiences go unnoticed. ^ The purpose of this research was to explore how best to include patients and family members in the disclosure process regarding a medical error. The research consisted of 28 qualitative interviews from three stakeholder groups: Hospital Administrators, Clinical Service Providers, and Patients and Family Members. They were asked for their ideas and suggestions on how best to include patients and family members in the disclosure process. Framework Analysis was used to analyze this data and find prevalent themes based on the primary research question. A secondary aim was to index categories created based on the interviews that were collected. Data was used from the Texas Disclosure and Compensation Study with Dr. Eric Thomas as the Principal Investigator. Full acknowledgement of access to this data is given to Dr. Thomas. ^ The themes from the research revealed that each stakeholder group was interested and open to including patients and family members in the disclosure process and that the disclosure process should not be a "one-way" avenue. The themes gave many suggestions regarding how to best include patients and family members in the disclosure process of a medical error. Secondary aims revealed several ways to assess the ideas and suggestion given by the stakeholders. Overall, acceptability of getting the perspective of patients and family members was the most common theme. Comparison of each stakeholder group revealed that including patients and family members would be beneficial to improving hospital disclosure practices. ^ Conclusions included a list of recommendations and measureable appropriate strategies that could provide hospital with key stakeholders insights on how to improve their disclosure process. Sharing patients and family members experience with healthcare providers can encourage a shift in culture where patients are valued and active in participating in hospital practices. To my knowledge, this research is the very first of its kind and moves the disclosure process conversation forward in a patient-family member inclusion direction that will assist in improving disclosure practices. Future research should implement and evaluate the success of the various inclusion strategies.^

An ICT-based closed-loop model to improve care for heart failure patients

Durante las últimas décadas se ha producido un fenómeno global de envejecimiento en la población. Esta tendencia se puede observar prácticamente en todos los países del mundo y se debe principalmente a los avances en la medicina, y a los descensos en las tasas de fertilidad y mortalidad. El envejecimiento de la población tiene un gran impacto en la salud de los ciudadanos, y a menudo es la causa de aparición de enfermedades crónicas. Este tipo de enfermedades supone una amenaza y una carga importantes para la sociedad, especialmente en aspectos como la mortalidad o los gastos en los sistemas sanitarios. Entre las enfermedades cardiovasculares, la insuficiencia cardíaca es probablemente la condición con mayor prevalencia y afecta a 23-26 millones de personas en todo el mundo. Normalmente, la insuficiencia cardíaca presenta un mal pronóstico y una tasa de supervivencia bajas, en algunos casos peores que algún tipo de cáncer. Además, suele ser la causa de hospitalizaciones frecuentes y es una de las enfermedades más costosas para los sistemas sanitarios. La tendencia al envejecimiento de la población y la creciente incidencia de las enfermedades crónicas están llevando a una situación en la que los sistemas de salud no son capaces de hacer frente a la demanda de la sociedad. Los servicios de salud existentes tendrán que adaptarse para ser efectivos y sostenibles en el futuro. Es necesario identificar nuevos paradigmas de cuidado de pacientes, así como mecanismos para la provisión de servicios que ayuden a transformar estos sistemas sanitarios. En este contexto, esta tesis se plantea la búsqueda de soluciones, basadas en las Tecnologías de la Información y la Comunicación (TIC), que contribuyan a realizar la transformación en los sistemas sanitarios. En concreto, la tesis se centra en abordar los problemas de una de las enfermedades con mayor impacto en estos sistemas: la insuficiencia cardíaca. Las siguientes hipótesis constituyen la base para la realización de este trabajo de investigación: 1. Es posible definir un modelo basado en el paradigma de lazo cerrado y herramientas TIC que formalice el diseño de mejores servicios para pacientes con insuficiencia cardíaca. 2. El modelo de lazo cerrado definido se puede utilizar para definir un servicio real que ayude a gestionar la insuficiencia cardíaca crónica. 3. La introducción, la adopción y el uso de un servicio basado en el modelo definido se traducirá en mejoras en el estado de salud de los pacientes que sufren insuficiencia cardíaca. a. La utilización de un sistema basado en el modelo de lazo cerrado definido mejorará la experiencia del usuario de los pacientes. La definición del modelo planteado se ha basado en el estándar ISO / EN 13940- Sistema de conceptos para dar soporte a la continuidad de la asistencia. Comprende un conjunto de conceptos, procesos, flujos de trabajo, y servicios como componentes principales, y representa una formalización de los servicios para los pacientes con insuficiencia cardíaca. Para evaluar el modelo definido se ha definido un servicio real basado en el mismo, además de la implementación de un sistema de apoyo a dicho servicio. El diseño e implementación de dicho sistema se realizó siguiendo la metodología de Diseño Orientado a Objetivos. El objetivo de la evaluación consistía en investigar el efecto que tiene un servicio basado en el modelo de lazo cerrado sobre el estado de salud de los pacientes con insuficiencia cardíaca. La evaluación se realizó en el marco de un estudio clínico observacional. El análisis de los resultados ha comprendido métodos de análisis cuantitativos y cualitativos. El análisis cuantitativo se ha centrado en determinar el estado de salud de los pacientes en base a datos objetivos (obtenidos en pruebas de laboratorio o exámenes médicos). Para realizar este análisis se definieron dos índices específicos: el índice de estabilidad y el índice de la evolución del estado de salud. El análisis cualitativo ha evaluado la autopercepción del estado de salud de los pacientes en términos de calidad de vida, auto-cuidado, el conocimiento, la ansiedad y la depresión, así como niveles de conocimiento. Se ha basado en los datos recogidos mediante varios cuestionarios o instrumentos estándar (i.e. EQ-5D, la Escala de Ansiedad y Depresión (HADS), el Cuestionario de Cardiomiopatía de Kansas City (KCCQ), la Escala Holandesa de Conocimiento de Insuficiencia Cardíaca (DHFKS), y la Escala Europea de Autocuidado en Insuficiencia Cardíaca (EHFScBS), así como cuestionarios dedicados no estandarizados de experiencia de usuario. Los resultados obtenidos en ambos análisis, cuantitativo y cualitativo, se compararon con el fin de evaluar la correlación entre el estado de salud objetivo y subjetivo de los pacientes. Los resultados de la validación demostraron que el modelo propuesto tiene efectos positivos en el cuidado de los pacientes con insuficiencia cardíaca y contribuye a mejorar su estado de salud. Asimismo, ratificaron al modelo como instrumento válido para la definición de servicios mejorados para la gestión de esta enfermedad. ABSTRACT During the last decades we have witnessed a global aging phenomenon in the population. This can be observed in practically every country in the world, and it is mainly caused by the advances in medicine, and the decrease of mortality and fertility rates. Population aging has an important impact on citizens’ health and it is often the cause for chronic diseases, which constitute global burden and threat to the society in terms of mortality and healthcare expenditure. Among chronic diseases, Chronic Heart Failure (CHF) or Heart Failure (HF) is probably the one with highest prevalence, affecting between 23 and 26 million people worldwide. Heart failure is a chronic, long-term and serious condition with very poor prognosis and worse survival rates than some type of cancers. Additionally, it is often the cause of frequent hospitalizations and one of the most expensive conditions for the healthcare systems. The aging trends in the population and the increasing incidence of chronic diseases are leading to a situation where healthcare systems are not able to cope with the society demand. Current healthcare services will have to be adapted and redefined in order to be effective and sustainable in the future. There is a need to find new paradigms for patients’ care, and to identify new mechanisms for services’ provision that help to transform the healthcare systems. In this context, this thesis aims to explore new solutions, based on ICT, that contribute to achieve the needed transformation within the healthcare systems. In particular, it focuses on addressing the problems of one of the diseases with higher impact within these systems: Heart Failure. The following hypotheses represent the basis to the elaboration of this research: 1. It is possible to define a model based on a closed-loop paradigm and ICT tools that formalises the design of enhanced healthcare services for chronic heart failure patients. 2. The described closed-loop model can be exemplified in a real service that supports the management of chronic heart failure disease. 3. The introduction, adoption and use of a service based on the outlined model will result in improvements in the health status of patients suffering heart failure. 4. The user experience of patients when utilizing a system based on the defined closed-loop model will be enhanced. The definition of the closed-loop model for health care support of heart failure patients have been based on the standard ISO/EN 13940 System of concepts to support continuity of care. It includes a set of concept, processes and workflows, and services as main components, and it represent a formalization of services for heart failure patients. In order to be validated, the proposed closed-loop model has been instantiated into a real service and a supporting IT system. The design and implementation of the system followed the user centred design methodology Goal Oriented Design. The validation, that included an observational clinical study, aimed to investigate the effect that a service based on the closed-loop model had on heart failure patients’ health status. The analysis of results comprised quantitative and qualitative analysis methods. The quantitative analysis was focused on determining the health status of patients based on objective data (obtained in lab tests or physical examinations). Two specific indexes where defined and considered in this analysis: the stability index and the health status evolution index. The qualitative analysis assessed the self-perception of patients’ health status in terms of quality of life, self-care, knowledge, anxiety and depression, as well as knowledge levels. It was based on the data gathered through several standard instruments (i.e. EQ-5D, the Hospital Anxiety and Depression Scale, the Kansas City Cardiomyopathy Questionnaire, the Dutch Heart Failure Knowledge Scale, and the European Heart Failure Self-care Behaviour Scale) as well as dedicated non-standardized user experience questionnaires. The results obtained in both analyses, quantitative and qualitative, were compared in order to assess the correlation between the objective and subjective health status of patients. The results of the validation showed that the proposed model contributed to improve the health status of the patients and had a positive effect on the patients’ care. It also proved that the model is a valid instrument for designing enhanced healthcare services for heart failure patients.

Who has a repeat abortion? Identifying women at risk of repeated terminations of pregnancy : analysis of routinely collected health care data

Peer reviewed