Family Centeredness Research Articles

Associations Between Quality of Primary Care and Health Care Use Among Children With Special Health Care Needs

To determine whether parent-reported quality of primary care was associated with subsequent health care use for children with special health care needs. Secondary analysis of prospectively collected data. The 2004-2005 and 2005-2006 Medical Expenditure Panel Survey panels. A total of 1591 children with special health care needs. Composite measures for family centeredness of care, timeliness of care, and realized access derived from the Consumer Assessment of Healthcare Providers and Systems survey. Rates of parent-reported emergency department visits (nonurgent and urgent) and hospitalizations. Only encounters occurring after completion of the Consumer Assessment of Healthcare Providers and Systems survey were assessed. Weighted multivariate Poisson regression analyses, yielding incident rate ratios, were used for analysis. Of the parents of the 1591 children included, 68.3% rated family centeredness, 51.5% rated timeliness, and 80.4% rated realized access as high quality. Low-quality family centeredness was associated with higher rates (incident rate ratio, 2.24; 95% confidence interval, 1.32-3.80) of nonurgent emergency department visits compared with corresponding rates associated with high-quality family centeredness. There were no associations between quality-of-care domains and rates of urgent emergency department visits. For privately insured children, low-quality family centeredness was associated with higher rates (incident rate ratio, 3.87; 95% confidence interval, 1.23-12.13) of hospitalizations compared with corresponding rates associated with high-quality family-centered care. For publicly insured children, no significant associations were found. Parent-reported, low-quality family centeredness was associated with higher rates of subsequent nonurgent emergency department visits and hospitalizations among children with special health care needs. These findings highlight family-centered care as a critical area for primary care intervention to reduce potentially preventable health care use.

A National and State Profile of Leading Health Problems and Health Care Quality for US Children: Key Insurance Disparities and Across-State Variations

BackgroundParent/consumer–reported data is valuable and necessary for population-based assessment of many key child health and health care quality measures relevant to both the Children’s Health Insurance Program Reauthorization Act (CHIPRA) of 2009 and the Patient Protection and Affordable Care Act of 2010 (ACA). ObjectivesThe aim of this study was to evaluate national and state prevalence of health problems and special health care needs in US children; to estimate health care quality related to adequacy and consistency of insurance coverage, access to specialist, mental health and preventive medical and dental care, developmental screening, and whether children meet criteria for having a medical home, including care coordination and family centeredness; and to assess differences in health and health care quality for children by insurance type, special health care needs status, race/ethnicity, and/or state of residence. MethodsNational and state level estimates were derived from the 2007 National Survey of Children’s Health (N = 91 642; children aged 0–17 years). Variations between children with public versus private sector health insurance, special health care needs, specific conditions, race/ethnicity, and across states were evaluated using multivariate logistic regression and/or standardized statistical tests. ResultsAn estimated 43% of US children (32 million) currently have at least 1 of 20 chronic health conditions assessed, increasing to 54.1% when overweight, obesity, or being at risk for developmental delays are included; 19.2% (14.2 million) have conditions resulting in a special health care need, a 1.6 point increase since 2003. Compared with privately insured children, the prevalence, complexity, and severity of health problems were systematically greater for the 29.1% of all children who are publicly insured children after adjusting for variations in demographic and socioeconomic factors. Forty-five percent of all children in the United States scored positively on a minimal quality composite measure: 1) adequate insurance, 2) preventive care visit, and 3) medical home. A 22.2 point difference existed across states and there were wide variations by health condition (autism, 22.8, to asthma, 39.4). After adjustment for demographic and health status differences, quality of care varied between children with public versus private health insurance on all but the following 3 measures: not receiving needed mental health services, care coordination, and performance on the minimal quality composite. A 4.60 fold (gaps in insurance) to 1.27 fold (preventive dental and medical care visits) difference in quality scores was observed across states. Notable disparities were observed among publicly insured children according to race/ethnicity and across all children by special needs status and household income. ConclusionsFindings emphasize the importance of health care insurance duration and adequacy, health care access, chronic condition management, and other quality of care goals reflected in the 2009 CHIPRA legislation and the ACA. Despite disparities, similarities for public and privately insured children speak to the pervasive nature of availability, coverage, and access issues for mental health services in the United States, as well as the system-wide problem of care coordination and accessing specialist care for all children. Variations across states in key areas amenable to state policy and program management support cross-state learning and improvement efforts.

Parents' Definition of Effective Child Disability Support Services: Implications for Implementing Family-Centered Practice

The current study examined parents' perspectives of services within a community-based childhood disability program in the process of enhancing the family centeredness of its services. Qualitative interviews were conducted with 39 mothers and 22 fathers approximately 18 months after entering the service delivery system. Parents reported that effective service delivery requires service coordinators with interpersonal and practice skills working within an adequately resourced service system that has policies and procedures that are responsive to family needs. Parent feedback was congruent with the principles of family-centered practice and has important implications for the implementation of family-centered services.

SpitexPlus: Assessment und fortgeschrittene Pflegeinterventionen für zuhause lebende alte Menschen und ihre Familien

Current demographic developments and the high prevalence of chronic conditions require new approaches to nursing care of the elderly population in Switzerland. New care models need to be developed that go beyond traditional nursing practice with its focus on the individual. Existing preventive home visit and case management programmes have mostly focussed on the young old with the goal to maintain functional health and prevent institutionalisation. Families, who play a crucial role in the care of the elderly at home, were not included. The purpose of this article is to describe the development of the SpitexPlus Project, which is directed at people 80 years and older and their families, irrespective of their health status and social situation. It aims to improve self-care capabilities and quality of life in people 80+ and their families and to enable them to manage the challenges of daily life at home. Evidence based nursing interventions, based on the principles of health promotion, empowerment, family centeredness, and partnership were developed. The development of the programme phases, interventions, and the role of the advanced practice nurses are described in detail. Potential benefits for nursing practice are delineated.

University of Vermont College of Medicine

University of Vermont College of Medicine

Usual Source of Care and the Quality of Medical Care Experiences

This study used a recent patient survey to examine the relationship between having a usual source of care (USC) and the quality of ambulatory medical care experiences in Taiwan, where there is universal health insurance coverage. The study design was a cross-sectional survey of 879 patients in Taichung County, Taiwan. Children and adults visiting hospital-based physicians were included. Quality of care was measured using items from the Primary Care Assessment Tool (PCAT), representing 7 ambulatory medical care domains: first contact (ie, access and utilization), longitudinality (ie, ongoing care), coordination (ie, referrals and information systems), comprehensiveness (ie, services available and provided), family centeredness, community orientation, and cultural competence. USC was defined based on responses to 3 survey items from the PCAT. Having a USC was significantly associated with higher quality of medical care experiences. Specifically, having a USC was associated with improved accessibility and utilization, ongoing care, coordination of referrals, and healthcare providers' family centeredness and cultural competence. However, having a USC was not strongly related with comprehensiveness of services, coordination of information systems, or healthcare providers' community orientation. In a region with universal health insurance, patients with a USC reported higher quality of medical care experiences compared with those without a USC. Beyond the provision of health insurance coverage, efforts to improve quality of care should include policies promoting USC.

Characteristics and Trends in Family-Centered Conceptualizations

Early-intervention and early childhood professionals have long considered family-centered service delivery best practice. Exactly what family-centered practice means, however, remains unclear. The lack of consensus in defining family centeredness results in incongruence in the manner and degree to which professionals implement family centeredness. This review of the literature examines current conceptualizations of family-centered practice in an effort to determine whether there is a common definition; and, if so, how that definition has changed over the past decade. The authors found that, though the key elements of family centeredness (i.e., family as the unit of attention, family choice, family strengths, family–professional relationship, and individualized family services) have remained consistent, the emphasis has shifted from the family as the unit of attention to family–professional relationship and family choice. Implications for early intervention practice and research are discussed.

Physician Specialty and the Quality of Medical Care Experiences in the Context of the Taiwan National Health Insurance System

Based on a recent patient survey from Taiwan, where there is universal health insurance coverage and unrestricted physician choice, this study examined the relationship between physician specialty and the quality of primary medical care experiences. We assessed ambulatory patients' experiences with medical care using the Primary Care Assessment Tool, representing 7 primary care domains: first contact (ie, accessibility and utilization); longitudinality (ie, ongoing care); coordination (ie, referrals and information systems); comprehensiveness (ie, services available and provided); family centeredness; community orientation; and cultural competence. Having a primary care physician was significantly associated with patients reporting higher quality of primary care experiences. Specifically, relative to specialty care physicians, primary care physicians enhanced accessibility, achieved better community orientation and cultural competence, and provided more comprehensive services. In an area with universal health insurance and unrestricted physician choice, ambulatory patients of primary care physicians rated their medical care experiences as superior to those of patients of specialists. In addition to providing health insurance coverage, promoting primary care should be included as a health policy to improve patients' quality of ambulatory medical care experiences.

Families' experiences of interaction with the public health nurse at the child health clinic in connection with mother's post‐natal depression

The birth of a new family member causes many changes in the way a family functions. Annually some 10% of mothers giving birth suffer from post-natal depression. This depression affects the mother herself, the baby and the functioning of the entire family. The healthcare personnel are faced with an important task in supporting the family in the course of changes occasioned by the birth of a baby. According to earlier studies, families with small children are fairly satisfied with the service provided by the child health clinics. The purpose of the present study was to form a theory of interaction with the public health nurse in the child health clinic when the mother is suffering from post-natal depression from the viewpoint of family. The data for the study were gathered by interviewing nine families (nine mothers and five fathers) where the mother had displayed symptoms of post-natal depression. The data were analysed using continuous comparative analysis of grounded theory. The concepts of the theory emerged as a lack of continuing relationship, a need to be equal partners, a lack of individuality and a lack of family care. The relationships between categories were lack of discussing, lack of being confidential and lack of getting help enough. The core category emerging was lack of holistic cooperation with unique family. In spite of the emphasis placed on family centeredness in the operating principles of the work in child health clinics, its implementation in practical work cannot be taken for granted. Because of the limited resources available to the clinics, it is the experience of depressed mother in particular that they are not treated sufficiently as individuals and that they are subjected to adjudication in the clinics. The parents felt that the personality of the public health nurse was crucial to how they felt about the service they obtained from the clinic.

Primary Care Quality and Subsequent Emergency Department Utilization for Children in Wisconsin Medicaid

Children enrolled in Medicaid have disproportionately high emergency department (ED) visit rates. Despite the growing importance of patient reported quality-of-care assessments, little is known about the association between parent-reported quality of primary care and ED utilization for these high-risk children. Our goal was to determine the association between parent-reported primary care quality and subsequent ED utilization for children in Medicaid. We studied a retrospective cohort of children enrolled in Wisconsin Medicaid. Parents of children sampled during fall 2002 and fall 2004 completed Consumer Assessment of Healthcare Providers and Systems surveys assessing their child's primary care quality in 3 domains: family centeredness, timeliness, and realized access. Primary outcomes were the rates of subsequent nonurgent and urgent ED visits, extracted from claims data for the year after survey completion. Negative binomial regression was used to determine the association between the domains of care and ED utilization. A total of 5468 children were included. High-quality family centeredness was associated with a 27% (95% confidence interval [95% CI] 11%-40%) lower nonurgent ED visit rate, but no lowering of the urgent visit rate. High-quality timeliness was associated with 18% (95% CI, 3%-31%) lower nonurgent and 18% (95% CI, 1%-33%) lower urgent visit rates. High-quality realized access was associated with a 27% (95% CI, 8%-43%) lower nonurgent visit rate and a 33% (95% CI, 14%-48%) lower urgent visit rate. Parent-reported high-quality timeliness, family centeredness, and realized access for a publicly insured child are associated with lower nonurgent ED, with high-quality timeliness and realized access associated with lower urgent ED utilization.

Nursing Leadership Collaboration for Rehabilitation of Polytrauma Patients

This article describes a variety of nursing issues that emerged over a 3-year period on polytrauma rehabilitation nursing units and the leadership roles and strategies that were used to meet the rehabilitation needs of newly injured servicemembers who served in Operation Enduring Freedom (OEF) in Afghanistan and Operation Iraqi Freedom (OIF). Nursing's leadership responsibilities focus on three primary areas: patient advocacy, family centeredness, and advocacy for staff Collaboration among the four national polytrauma rehabilitation centers (PRCs) run by the U.S. Department of Veterans Affairs has enhanced the skill set for nursing staff members. These rehabilitation nurses possess the strong skills necessary to assess complex patient cases involving blast injuries, as well as strengthened interpersonal competencies in family dynamics, family education, and team function.

A Review of the Evidence for the Medical Home for Children With Special Health Care Needs

The receipt of health care in a medical home is increasingly touted as a fundamental basis for improved care for persons with chronic conditions, yet the evidence for this claim has not been systematically assessed. Our goal was to determine the evidence for the federal Maternal and Child Health Bureau recommendation that children with special health care needs receive ongoing comprehensive care within a medical home. We searched the nursing and medical literature, references of selected articles, and requested expert recommendations. Search terms included children with special health care needs, medical home-related interventions, and health-related outcomes. Articles that met defined criteria (eg, children with special health care needs, United States-based, quantitative) were selected. We extracted data, including design, population characteristics, sample size, intervention, and findings from each article. We selected 33 articles that reported on 30 distinct studies, 10 of which were comparison-group studies. None of the studies examined the medical home in its entirety. Although tempered by weak designs, inconsistent definitions and extent of medical home attributes, and inconsistent outcome measures, the preponderance of evidence supported a positive relationship between the medical home and desired outcomes, such as better health status, timeliness of care, family centeredness, and improved family functioning. The evidence provides moderate support for the hypothesis that medical homes provide improved health-related outcomes for children with special health care needs. Additional studies with comparison groups encompassing all or most of the attributes of the medical home need to be undertaken.

Welcome to a Special Issue

As the United States enters one of the largest healthcare construction programs in its history-with construction projected to exceed $70 billion a year by 2011 (Jones, 2007)-many healthcare organizations are using evidence-based design (EBD) to help guide their capital facility investment. EBD relies on a deep and broad knowledge of the relevant evidence from research and best practice. However, as Zimring, Augenbroe, Malone, & Sadler (2008) say in their paper in this issue:At the core of EBD is a fundamental shift in the way healthcare organizations think about, deliver, and manage buildings. Rather than simply being regarded as cost centers, in EBD buildings are seen as strategic tools where strategic investments can yield important benefits. Yet to achieve these benefits, buildings must be planned, designed, and operated in a new way?. [A]n EBD approach is a structured process that establishes broad agreement on the principles underlying a design, articulates goals that must be satisfied to achieve those principles, and sets measurable, expected outcomes. (pp. 7-8)This special issue focuses on four sets of key questions that illuminate the practice and science of EBD:* How does a chief executive officer actually implement EBD? All projects have ambitious goals; how can this practice actually be infused into the thousands of decisions made in a multiyear healthcare project?* What is the overall business case for EBD and how does one build a business case for individual projects?* How can physical design development be linked to development of the culture of an organization?* What is the evidence base for EBD? Where is rigorous evidence about the impact of the built environment on key healthcare outcomes to be found?These articles are based on research conducted by a diverse group of thought leaders with funding from the Robert Wood Johnson Foundation. The purpose of this grant is to provide materials and tools that will help high-level hospital decision makers effectively implement EBD in their projects. As this project, conducted jointly by Georgia Tech, The Center for Health Design, and the research partners writing in this issue, is completed, it will yield white papers, webinars, a Health- Care Design Community Portal, and other tools.This issue of HERD includes four papers:1. Implementing Healthcare Excellence: The Vital Role of the CEO in Evidence-Based Design. This paper uses lessons learned from hospital leaders and the experience of the authors to create practical guidance for CEOs who want to use EBD as a tool to transform their organizations. In addition to keys to success, the paper also discusses barriers to innovation and strategies for overcoming these barriers. This paper provides a model for EBD that CEOs can use to create a facility that increases quality, safety, patientand- family centeredness, and revenue and that reduces cost. …

Relations Between Program and System Variables and Fidelity to the Wraparound Process for Children and Families

Relations Between Program and System Variables and Fidelity to the Wraparound Process for Children and Families

The Ottawa Model of Research Use

To improve performance of a neonatal transport team by implementing a research-based family assessment instrument. Objectives included providing a structure for evaluating families and fostering the healthcare relationship. Neonatal transports are associated with family crises. Transport teams require a comprehensive framework to accurately assess family responses to adversity and tools to guide their practice toward parental mastery of the event. Currently, there are no assessment tools that merge family nursing expertise with neonatal transport. A family assessment tool grounded in contemporary family nursing theory and research was developed by a clinical nurse specialist. The Ottawa Model of Research Use guided the process of piloting the innovation with members of a transport team. Focus groups, interviews, and surveys were conducted to create profiles of barriers and facilitators to research use by team members. Tailored research transfer strategies were enacted based on the profile results. Formative evaluations demonstrated improvements in team members' perceptions of their knowledge, family centeredness, and ability to assess and intervene with families. The family assessment tool is currently being incorporated into Clinical Practice Guidelines for Transport and thus will be considered standard care. Use of a family assessment tool is an effective way of appraising families and addressing suffering. The Ottawa Model of Research Use provided a framework for implementing the clinical innovation. A key role of the clinical nurse specialist is to influence nursing practice by fostering research use by practitioners. When developing and implementing a clinical innovation, input from end users and consumers is pivotal. Incorporating the innovation into a practice guideline provides a structure to imbed research evidence into practice.

Newborn jaundice and kernicterus--health and societal perspectives.

Kernicterus, a preventable injury to the brain from severe neonatal jaundice, has re-emerged in the United States as a public and societal health concern. Kernicterus, in its usually recognized form, causes devastating disabilities, including athetoid cerebral palsy and speech and hearing impairment. This condition not only ranks amongst the highest cost per new case (per CDCs Financial Burden of Disability study, 1992), but also results in profound and uncompromising grief for the family and loss to siblings of healthy, talkative playmates. And for the child with kernicterus (usually remarkably intelligent, but trapped in an uncontrollable body), grief and frustration are enormous. In 2001 national healthcare organizations, including Centers for Disease Control (CDC), the Joint Commission for the Accreditation of Healthcare Organizations (JACHO) and the American Academy of Pediatrics (AAP) issued alerts to all accredited hospitals and public health professionals in the United States that all healthy infants are at potential risk of kernicterus if their newborn jaundice is unmonitored and inadequately treated. The re-emergence of kernicterus in the United States is the result of interacting phenomena including (a) Early hospital discharge (before extent of jaundice is known and signs of impending brain damage have appeared); (b) Lack of adequate concern for the risks of severe jaundice in healthy term and near newborns; (c) An increase in breast feeding; (d) Medical care cost constraints; (e) Paucity of educational materials to enable parents to participate in safeguarding their newborns; and (f) Limitations within in healthcare systems to monitor the outpatient progression of jaundice. A multidisciplinary approach that encompasses both healthcare and societal needs should be evaluated at a national level for practical and easy to implement strategies. An approach that is based on principles of evidence-based medicine, patient-safety and family centeredness is presented in this article. These strategies should also be based on public awareness campaign such that the healthcare providers can attempt to achieve a "Zero Tolerance of Kernicterus" and thereby decrease both childhood disabilities and infant mortality within the community.

Early Intervention

Early Intervention

Comprehensiveness Is a Cliché

The purpose of this study was to explore professionals' orientation toward child assessment and planning. Semistructured questionnaire data and interview data were collected from child neurological units in Finland. Legislation in Finland does not specifically provide guidelines for family centeredness and comprehensiveness in early intervention, yet professionals have widely accepted these approaches in their work with children with disabilities and their families. Results of this study indicated that practices were not implemented consistently. Professionals' varying perceptions of the concept of comprehensiveness and family involvement seemed to interfere with the implementation of these guidelines.

Involving families in training early childhood educators: Developing a framework for family centeredness

More early childhood programs are including young children with disabilities, thereby creating inclusive environments. In order to adequately prepare personnel for working in these inclusive settings and because of the major focus on family involvement, teacher preparation programs have developed competencies related to family centered practices. One of the most valuable methods for assisting students in developing a family‐centered philosophy is to involve families in the training process. Families of children with disabilities already have much experience in dealing with the many diverse services provided to young children such as, medical staff, social service agencies, specialists (i.e., physical therapists, occupational therapists), early interventionists and teachers and therefore, could provide extensive learning opportunities for students especially from a parents’ perspective. While there are many advantages for involving family members in training activities, there are also some challenges. The purpose of this article is to discuss the importance of involving families in early childhood teacher preparation programs, different strategies for including them, and the benefits and challenges of partnering with them. © 2001 Elsevier Science Inc. All rights reserved.

Family-Centered Services

The purpose of this study was to examine family-centered practice in terms of six service providers' philosophies and behaviors. Six professionals from a pool of 43 service providers were identified as matching the practices and philosophies identified in the literature as family centered. These providers and some of the families they served were interviewed. Five underlying components of family-centered services were identified: positiveness, responsiveness, orientation to the whole family, friendliness, and sensitivity. Moreover, these service providers displayed skills with children and communities. Understanding these features of high-quality service provision expands our understanding of family centeredness and establishes a basis for policy, training, and service recommendations.