Children with special health care needs: Comparison of the effects of home care setting, prescribed pediatric extended care setting, and long-term care setting on child and family health outcomes and health care service use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL™ Generic Core Module for child health and functioning, PedsQL™ Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Effects of two intervention strategies on the behavior of nurses and nurse students related to advance directives

Advance directives are one mechanism for preserving the rights of individuals to exercise some control over their health care when serious illness may prevent them from direct participation. Nurses, as the health care providers with the closest and most sustained contact with critically ill and dying patients, are positioned to assist patients to plan for future health care needs. Although a majority of nurses favor the concept of advance directives for their patients and for themselves, they have not played a significant role in facilitating advance health care planning with their patients nor implemented advance health care planning for themselves.^ Research has also shown that differing forms of education and counseling increase the completion rates for advance directives in selected populations, mostly the elderly and seriously ill. Not yet developed are effective educational strategies to assist nurses and nurse students to make optimal contributions in assisting their clients' plans for future health care decision-making. This study sought to determine whether specific learning strategies (a) increased the involvement of nurses and nurse students in facilitating advance care planning with patients and (b) increased the percentage of the nurses' and nurse students' own personal advance care planning activities.^ The study compared two learning interventions and two populations, nurses and nurse students. The participants were randomly assigned to one of the two learning interventions, L1 or L2. Participants in L1 received a lecture, discussion and exploration of the forces impacting on advance directive behavior. Participants in L2 received the same intervention components with the additional component of group practice completing advance directives.^ Analysis of the data by chi-square and logistic regression did not support the hypotheses that the practice component would make a difference in the participants' facilitation of advance care planning with patients or in their own personal advance care planning activities. There were significant differences in post-intervention behavior between the nurse and nurse student groups. The nurses in the study did significantly more facilitation of advance care planning with patients and completed significantly more advance care documents than the nurse students post-intervention. However, the nurse students held more post-intervention family discussions than did the nurses. ^

A planning model for needs analysis for subacute care

The purpose of this study is to produce a model to be used by state regulating agencies to assess demand for subacute care. In accomplishing this goal, the study refines the definition of subacute care, demonstrates a method for bed need assessment, and measures the effectiveness of this new level of care. This was the largest study of subacute care to date. Research focused on 19 subacute units in 16 states, each of which provides high-intensity rehabilitative and/or restorative care carried out in a high-tech unit. Each of the facilities was based in a nursing home, but utilized separate staff, equipment, and services. Because these facilities are under local control, it was possible to study regional differences in subacute care demand.^ Using this data, a model for predicting demand for subacute care services was created, building on earlier models submitted by John Whitman for the American Hospital Association and Robin E. MacStravic. The Broderick model uses the "bootstrapping" method and takes advantage of high technology: computers and software, databases in business and government, publicly available databases from providers or commercial vendors, professional organizations, and other information sources. Using newly available sources of information, this new model addresses the problems and needs of health care planners as they approach the challenges of the 21st century. ^

A planning model for needs analysis for subacute care

The purpose of this study is to produce a model to be used by state regulating agencies to assess demand for subacute care. In accomplishing this goal, the study refines the definition of subacute care, demonstrates a method for bed need assessment, and measures the effectiveness of this new level of care. This was the largest study of subacute care to date. Research focused on 19 subacute units in 16 states, each of which provides high-intensity rehabilitative and/or restorative care carried out in a high-tech unit. Each of the facilities was based in a nursing home, but utilized separate staff, equipment, and services. Because these facilities are under local control, it was possible to study regional differences in subacute care demand. Using this data, a model for predicting demand for subacute care services was created, building on earlier models submitted by John Whitman for the American Hospital Association and Robin E. MacStravic. The Broderick model uses the "bootstrapping" method and takes advantage of high technology: computers and software, databases in business and government, publicly available databases from providers or commercial vendors, professional organizations, and other information sources. Using newly available sources of information, this new model addresses the problems and needs of health care planners as they approach the challenges of the 21st century.

Utilization of needs assessments by decision makers: A comparative analysis of assessment methods

The major purpose of this study was to ascertain how needs assessment findings and methodologies are accepted by public decision makers in the U.S. Virgin Islands. To accomplish this, the following five different needs assessments were executed: (1) population survey; (2) key informants survey; (3) community forum; (4) rates-under-treatment (RUT); and (5) social indicators analysis. The assessments measured unmet needs of older persons regarding transportation, in-home care, and socio-recreation services, and determined which of the five methodologies is most costly, time consuming, and valid.^ The results of a five-way comparative analysis was presented to public sector decision makers who were surveyed to determine whether they are influenced more by needs assessment findings, or by the methodology used, and to ascertain the factors that lead to their acceptance of needs assessment findings and methodologies.^ The survey results revealed that acceptance of findings and methodology is influenced by the congruency of the findings with decision makers' goals and objectives, feasibility of the findings, and credibility of the researcher.^ The study also found that decision makers are influenced equally by needs assessment findings and methodology; that they prefer population surveys, although they are the most expensive and time consuming of the methodologies; that different types of needs assessments produce different results; and, that needs assessment is an essential program planning tool. Executive decision makers are found to be influenced more by management factors than by legal and political factors, while legislative decision makers are influenced more by legal factors. Decision makers overwhelmingly view their leadership style as democratic.^ A typology of the five needs assessments, highlighting their strengths and weaknesses, is offered as a planning guide for public decision makers. ^

Nurses' spiritual well-being: Its influence on attitudes and level of practice in providing spiritual care

The purpose of this study was to examine the relationship between the spiritual well-being of nurses and its influence on their attitudes toward providing spiritual care to patients. Two research instruments and a demographic data form were used for the survey. Using a descriptive design, tbe Spiritual Well-Being Scale, the Health Professional's Spiritual Role Scale, and the demographic data form were administered to 100 registered nurses from a large South Florida teaching hospital. The findings indicated a significantly positive correlation between the overall Spiritual Well-Being Scale and the Health Professional's Spiritual Role Scale (r = 0.52; p =.005). Significant differences were found between correlation of nurses' levels of spiritual well-being and all sociodemographic factors except for the three Age Groups and for religious affiliations. Findings have implications for how nurses should be trained in meeting patients total needs. ^

Managerial work roles of health care executives in the changing environment of academic medical centers

The current U.S. health care system faces numerous environmental challenges. To compete and survive, health care organizations are developing strategies to lower costs and increase efficiency and quality. All of these strategies require rapid and precise decision making by top level managers. The purpose of this study is to determine the relationship between the environment, made up of unfavorable market conditions and limited resources, and the work roles of top level managers, specifically in the settings of academic medical centers. Managerial work roles are based on the ten work roles developed by Henry Mintzberg, in his book, The Nature of Managerial Work (1973). ^ This research utilized an integrated conceptual framework made up of systems theory in conjunction with role, attribution and contingency theories to illustrate that four most frequently performed Mintzberg's work roles are affected by the two environment dimensions. The study sample consisted of 108 chief executive officers in academic medical centers throughout the United States. The methods included qualitative methods in the form of key informants and case studies and quantitative in the form of a survey questionnaire. Research analysis involved descriptive statistics, reliability tests, correlation, principal component and multivariate analyses. ^ Results indicated that under the market condition of increased revenue based on capitation, the work roles increased. In addition, under the environment dimension of limited resources, the work roles increased when uncompensated care increased while Medicare and non-government funding decreased. ^ Based on these results, a typology of health care managers in academic medical centers was created. Managers could be typed as a strategy-formulator, relationship-builder or task delegator. Therefore, managers who ascertained their types would be able to use this knowledge to build their strengths and develop their weaknesses. Furthermore, organizations could use the typology to identify appropriate roles and responsibilities of managers for their specific needs. Consequently, this research is a valuable tool for understanding health care managerial behaviors that lead to improved decision making. At the same time, this could enhance satisfaction and performance and enable organizations to gain the competitive edge . ^

Health care utilization behavior of elders in a multicultural urban environment

The objective of this research is to determine the influences of social, environmental, behavioral, and economic forces on the health care service utilization of four racial/ethnic groups of non-institutionalized elders in a multicultural urban environment. To address these issues this dissertation examines three intertwined themes of culture, aging, and health, using a sample of elders residing in Miami-Dade County, FL in four racial/ethnic groups: white non-Hispanic; black non-Hispanic English speakers; Cuban; and non-Cuban Hispanic. ^ The research questions were analyzed using both quantitative and qualitative data. Data for the quantitative component uses telephone survey data from the Dade County Needs Assessment. The purpose of this component is to develop a more comprehensive model of elder health care utilization behavior. The qualitative component uses data from focus groups from Dade County Needs Assessment, archival data and a literature review of previous ethnographic research. The purpose of this component is to gain a better understanding of the social construction of the terms “age”' and “aging,” as well as to place issues of health and health care in the lives of elders. ^ The findings raised several important issues. First, just because people share a common chronological age does not mean that they are the same in every other respect. Examining elders as a homogeneous group of users of formal health care services in a community is simplistic. Placing “aging” and “health” in a cultural context is important. My findings confirm that the meaning of “aging” and “old” are socially constructed. Further, the term “aging” is NOT synonymous with ill health or frailty. This was a consistent finding in both the quantitative and qualitative results. ^ While all aging individuals share a mutual orientation toward aging (i.e., biological process), they do not age the same way (i.e., social construction of “aging”). Thus, policymakers and others serving the elder population must be aware of the particular cultural context, as well as the previous life experiences of the individuals that they serve. This analysis documents the importance of culture and geographic community in understanding health care service utilization of elders. ^

Stressors, mediators, and health care outcomes of home enteral nutrition in family caregivers and their older adult care recipients

Family caregivers manage home enteral nutrition (HEN) for over 77% of an estimated 1 of every 400 Medicare recipients. Increasing usage of HEN in older adults combined with reliance on family caregivers raises concerns for the quality, outcomes, and costs of care. These concerns are relevant in light of Medicare limitations on nursing assistance and non-reimbursement for nutrition services, despite annual costs of over $600 million. This study applied stress process theories to assess stressor, mediator, and outcome variables salient to HEN and caregiving. In-home structured interviews occurred with a multi-ethnic sample of 30 caregiving dyads at 1–3 months after discharge on HEN. Care recipients were aged ≥60 (M = 68.4 years) and did not have dementia. Caregivers were aged ≥21, unpaid, and lived within 45 minutes of care recipients. Caregivers performed an average of 19.7 tasks daily for 61.9 hours weekly. Training needs were identified for 33 functional, care management, technical, and nutritional tasks. Preparedness scores were low (M = 1.73/4.0), and positively correlated with competence, self-rated quality of care and positive feelings, and negatively with overload, role captivity, and negative feelings (Ps < .05). Caregivers had multiple changes in lifestyle and dietary behaviors. Lifestyle changes positively correlated with overload, and negatively with preparedness and positive feelings. Dietary changes positively correlated with number of tasks, overload, role captivity and negative feelings, and negatively with preparedness (Ps < .01). Fifty-seven percent of caregivers aged >50 were at nutrition risk. Care recipients fared worse. Average weight change was −4.35 pounds (P < .001). Physical complications interrupted daily enteral infusions. Water intake was half of fluid need and associated with signs of dehydration (P < .001). Physical and social function was poor, with older subjects more impaired ( P < .04). Those with better prepared or less overloaded caregivers had higher functionality and QOL (P < .002). Complications, type of feeding tube, and caregiver preparedness correlated with frequency of health care utilization (Ps < .05). Efficacy of HEN in older adults requires specialized caregiver training, attention to caregivers' needs, and frequent monitoring from a highly skilled multidisciplinary team including dietitians. ^

Risk based post closure care analysis for Florida landfills

Subtitle D of the Resource Conservation and Recovery Act (RCRA) requires a post closure period of 30 years for non hazardous wastes in landfills. Post closure care (PCC) activities under Subtitle D include leachate collection and treatment, groundwater monitoring, inspection and maintenance of the final cover, and monitoring to ensure that landfill gas does not migrate off site or into on site buildings. The decision to reduce PCC duration requires exploration of a performance based methodology to Florida landfills. PCC should be based on whether the landfill is a threat to human health or the environment. Historically no risk based procedure has been available to establish an early end to PCC. Landfill stability depends on a number of factors that include variables that relate to operations both before and after the closure of a landfill cell. Therefore, PCC decisions should be based on location specific factors, operational factors, design factors, post closure performance, end use, and risk analysis. The question of appropriate PCC period for Florida’s landfills requires in depth case studies focusing on the analysis of the performance data from closed landfills in Florida. Based on data availability, Davie Landfill was identified as case study site for a case by case analysis of landfill stability. The performance based PCC decision system developed by Geosyntec Consultants was used for the assessment of site conditions to project PCC needs. The available data for leachate and gas quantity and quality, ground water quality, and cap conditions were evaluated. The quality and quantity data for leachate and gas were analyzed to project the levels of pollutants in leachate and groundwater in reference to maximum contaminant level (MCL). In addition, the projected amount of gas quantity was estimated. A set of contaminants (including metals and organics) were identified as contaminants detected in groundwater for health risk assessment. These contaminants were selected based on their detection frequency and levels in leachate and ground water; and their historical and projected trends. During the evaluations a range of discrepancies and problems that related to the collection and documentation were encountered and possible solutions made. Based on the results of PCC performance integrated with risk assessment, projection of future PCC monitoring needs and sustainable waste management options were identified. According to these results, landfill gas monitoring can be terminated, leachate and groundwater monitoring for parameters above MCL and surveying of the cap integrity should be continued. The parameters which cause longer monitoring periods can be eliminated for the future sustainable landfills. As a conclusion, 30 year PCC period can be reduced for some of the landfill components based on their potential impacts to human health and environment (HH&E).

The role of the health care organization in supporting nurses in the delivery of culturally competent care

This study was designed to explore ways in which health care organizations (HCOs) can support nurses in their delivery of culturally competent care. While cultural competence has become a priority for the federal government as well as the major health professional organizations, its integration into care delivery has not yet been realized. Health professionals cite a lack of educational preparation, time, and organizational resources as barriers. Most experts in the field agree that the cultural and linguistic needs of ethnic minorities pose challenges that individual care providers are unable to manage without the support of the health care organizations within which they practice. While several studies have identified implications for HCOs, there is a paucity of research on their role in this aspect of care delivery. Using a qualitative design with a case study approach, data collection included face-to-face interviews with 23 registered nurses, document analysis, and reports of critical incidents. The site chosen was a large health care system in South Florida that serves a culturally diverse population. Major findings from the study included language barriers, lack of training, difficulty with cultural differences, lack of organizational support, and reliance on culturally diverse staff members. Most nurses thought the ethnic mix was adequate, but rated other supports such as language services, training, and patient education materials as inadequate. Some of the recommendations for organizational performance were to provide the expectations and support for culturally competent care. Implications and recommendations for practice include nurses using trained interpreters instead of relying on coworkers or trying to "wing it", pursuing training, and advocating for organizational supports for culturally competent care. Implications and recommendations for theory included a blended model that combines both models in the conceptual framework. Recommendations for future research were for studies on the impact of language bathers on care delivery, develop and test a quantitative instrument, and to incorporate Gilbert's model into nursing research.

Occupational therapists' attitudes toward family -centered care

The purpose of this study was to examine pediatric occupational therapists attitudes towards family-centered care. Specific attributes identified by the literature (professional characteristics, educational experiences and organizational culture) were investigated to determine their influence on these attitudes. Study participants were 250 pediatric occupational therapists who were randomly selected from the American Occupational Therapy Association special interest sections. ^ Participants received a mail packet with three instruments to complete and mail back within 2 weeks. The instruments were (a) the Professional Attitude Scale, (b) the Professional Characteristics Questionnaire, and (c) the Family-Centered Program Rating Scale. There was a 50% return rate. Data analysis was conducted in SPSS using descriptive statistics, correlations and regression analysis. ^ The analysis showed that pediatric occupational therapists working in various practice settings demonstrate favorable attitudes toward family-centered care as measured by the Professional Attitude Scale. There was no correlation between professional characteristics and educational experiences to therapists' attitudes. A moderate correlation (r = .368, p < .05) was found between the occupational therapists attitudes and the organizational culture of their workplaces. A factor analysis was conducted on the organizational culture instrument (FamPRS) as this sample was exclusively pediatric occupational therapists and the original sample was interdisciplinary professionals. Two factors were extracted using a principal components extraction and varimax rotation, in addition to examination of the scree plot. These two factors accounted for 50% of the total variance of the scores on the instrument. Factor 1, called empowerment accounted for 45.6% of the variance, and Factor 2, responsiveness accounted for 4.3% of the variance of the entire instrument. Stepwise regression analysis demonstrated that these two factors accounted for 16% of the variance toward attitudes clinicians hold toward family-centered care. These factors support the tenets of family-centered care; empowering parents to be leaders in their child's health care and helping organizations become more responsive to family needs. ^ These study findings suggest that organizational culture has some influence on occupational therapists attitudes toward family-centered care (R 2 = .16). These findings suggest educators should consider families as valuable resources when considering program planning in family-centered care at preservice and workplace settings. ^

Risk Based Post Closure Care Analysis for Florida Landfills

Subtitle D of the Resource Conservation and Recovery Act (RCRA) requires a post closure period of 30 years for non hazardous wastes in landfills. Post closure care (PCC) activities under Subtitle D include leachate collection and treatment, groundwater monitoring, inspection and maintenance of the final cover, and monitoring to ensure that landfill gas does not migrate off site or into on site buildings. The decision to reduce PCC duration requires exploration of a performance based methodology to Florida landfills. PCC should be based on whether the landfill is a threat to human health or the environment. Historically no risk based procedure has been available to establish an early end to PCC. Landfill stability depends on a number of factors that include variables that relate to operations both before and after the closure of a landfill cell. Therefore, PCC decisions should be based on location specific factors, operational factors, design factors, post closure performance, end use, and risk analysis. The question of appropriate PCC period for Florida’s landfills requires in depth case studies focusing on the analysis of the performance data from closed landfills in Florida. Based on data availability, Davie Landfill was identified as case study site for a case by case analysis of landfill stability. The performance based PCC decision system developed by Geosyntec Consultants was used for the assessment of site conditions to project PCC needs. The available data for leachate and gas quantity and quality, ground water quality, and cap conditions were evaluated. The quality and quantity data for leachate and gas were analyzed to project the levels of pollutants in leachate and groundwater in reference to maximum contaminant level (MCL). In addition, the projected amount of gas quantity was estimated. A set of contaminants (including metals and organics) were identified as contaminants detected in groundwater for health risk assessment. These contaminants were selected based on their detection frequency and levels in leachate and ground water; and their historical and projected trends. During the evaluations a range of discrepancies and problems that related to the collection and documentation were encountered and possible solutions made. Based on the results of PCC performance integrated with risk assessment, projection of future PCC monitoring needs and sustainable waste management options were identified. According to these results, landfill gas monitoring can be terminated, leachate and groundwater monitoring for parameters above MCL and surveying of the cap integrity should be continued. The parameters which cause longer monitoring periods can be eliminated for the future sustainable landfills. As a conclusion, 30 year PCC period can be reduced for some of the landfill components based on their potential impacts to human health and environment (HH&E).

A phenomenological perspective of the lived experiences of Jewish holocaust survivors seeking health care in the United States today

Seven Jewish Holocaust survivors were interviewed using a phenomenological method to determine the essence of the Jewish Holocaust survivor's experience with health care in the United States today. The transcriptions were analyzed using Colaizzi's approach to phenomenological research. This approach includes extraction of significant statements, from the transcriptions, that described the participant's health care behaviors and needs. Formulated meanings of the significant statements were then organized into six themes: Hiding and Avoidance, Self care, Fear/Trust Dichotomy, Security, Luck, and Need for Understanding. These six themes were forms of protection for the participants, which ultimately led to continued survival, the essence of their experience. Knowledge of their experience may direct the nurse in implementing creative and appropriate nursing interventions to provide comfort and assist the survivor with their needs in today's health care arena.