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.

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. ^

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.

The effectiveness of explicit individualized phonemic awareness instruction by a speech -language pathologist to preschool children with phonological speech disorders

This study investigated the effects of an explicit individualized phonemic awareness intervention administered by a speech-language pathologist to 4 prekindergarten children with phonological speech sound disorders. Research has demonstrated that children with moderate-severe expressive phonological disorders are at-risk for poor literacy development because they often concurrently exhibit weaknesses in the development of phonological awareness skills (Rvachew, Ohberg, Grawburg, & Heyding, 2003).^ The research design chosen for this study was a single subject multiple probe design across subjects. After stable baseline measures, the participants received explicit instruction in each of the three phases separately and sequentially. Dependent measures included same-day tests for Phase I (Phoneme Identity), Phase II (Phoneme Blending), and Phase III (Phoneme Segmentation), and generalization and maintenance tests for all three phases.^ All 4 participants made substantial progress in all three phases. These skills were maintained during weekly and biweekly maintenance measures. Generalization measures indicated that the participants demonstrated some increases in their mean total number of correct responses in Phase II and Phase III baseline while the participants were in Phase I intervention, and more substantial increases in Phase III baseline while the participants were in Phase II intervention. Increased generalization from Phases II to III could likely be explained due to the response similarities in those two skills (Cooper, Heron, & Heward, 2007).^ Based upon the findings of this study, speech-language pathologists should evaluate phonological awareness in the children in their caseloads prior to kindergarten entry, and should allocate time during speech therapy to enhance phonological awareness and letter knowledge to support the development of both skills concurrently. Also, classroom teachers should collaborate with speech-language pathologists to identify at-risk students in their classrooms and successfully implement evidence-based phonemic awareness instruction. Future research should repeat this study including larger groups of children, children with combined speech and language delays, children of different ages, and ESOL students.^

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.