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.

The effect of a breakfast program on nutritional status, quality of life, and health care use among frail homebound older adults

The population of older adults is rapidly increasing, creating a need for community services that assist vulnerable older adults in maintaining independence and quality of life. Recent evidence confirms the importance of food and nutrition in reaching this objective. The Elderly Nutrition Program (ENP) is part of a system of federally funded community based programs, authorized through the Older Americans Act. ENP services include the home-delivered meals program, which targets frail homebound older adults at nutritional risk. Traditionally, ENP services provide a noon meal 5 days/week. This study evaluated the impact of expanding the home-delivered meals service to include breakfast + lunch, on the nutritional status, quality of life and health care utilization of program participants. ^ This cross-sectional study compared 2 groups. The Breakfast group (n = 167) received a home-delivered breakfast + lunch, 5 days/week. The Comparison group (n = 214) received lunch 5 days/week. Participants, recruited from 5 ENP programs, formed a geographically, racially/ethnically diverse sample. Participants ranged in age from 60–100 years, they were functionally limited, at high nutritional risk, low income, and they lived alone and had difficulty shopping or preparing food. Participant data were collected through in-home interviews and program records. A 24-hour food recall and information on participant demographics, malnutrition risk, functional status, health care use, and applicable quality of life factors were obtained. Service and cost data were collected from program administrators. ^ Breakfast group participants had greater energy/nutrient intakes (p < .05), fewer health care contacts (p < .05), and greater quality of life measured as food security (p < .05) and fewer depressive symptoms (p < .05), than comparison group participants. These benefits were achieved for $1.30/person/day. ^ The study identified links from improvements in nutritional status to enhanced quality of life to diminished health care utilization and expenditures. A model of health, loneliness, food enjoyment, food insecurity, and depression as factors contributing to quality of life for this population, was proposed and tested (p < .01). ^ The breakfast service is an inexpensive addition to traditional home-delivered meals services and can improve the lives of frail homebound older adults. Agencies should be encouraged to expand meals programs to include a breakfast service. ^

Diabetes Self Management: Are Cuban Americans Receiving Quality Health Care?

Objectives: We investigated the relationship among factors predicting inadequate glucose control among 182 Cuban-American adults (Females=110, Males=72) with type 2 diabetes mellitus (CAA). Study Design: Cross-sectional study of CAA from a randomized mailing list in two counties of South Florida Methods: Fasted blood parameters and anthropometric measures were collected during the study. BMI was calculated (kg/ m2). Characteristics and diabetes care of CAA were self-reported Participants were screened by trained interviewers for heritage and diabetes status (inclusion criteria: self-reported having type 2 diabetes; age  35 years, male and female; not pregnant or lactating; no thyroid disorders; no major psychiatric disorders). Participants signed informed consent form. Statistical analyses used SPSS and included descriptive statistic, multiple logistic and ordinal logistic regression models, where all CI 95%. Results: Eighty-eight percent of CAA had BMI of ≥ 25 kg/ m2. Only 54% reported having a diet prescribed/told to schedule meals. We found CAA told to schedule meals were 3.62 more likely to plan meals (1.81, 7.26), p<0.001) and given a prescribed diet, controlling for age, corresponded with following a meal plan OR 4.43 (2.52, 7.79, p<0.001). The overall relationship for HbA1c < 8.5 to following a meal plan was OR 9.34 (2.84, 30.7. p<0.001). Conclusions: The advantage of having a medical professional prescribe a diet seems to be an important environmental support factor in this sample’s diabetes care, since obesity rates are well above the national average. Nearly half CAA are not given dietary guidance, yet our results indicate CAA may improve glycemic control by receiving dietary instructions.

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 . ^

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. ^