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.

Predictors of Independent Living Outcomes Among Older Women Receiving Informal Care

This study examined the predictors of independent living outcomes among community–living older women who received informal care. The central hypothesis was that older women’s level of functioning is influenced by their relationship with their informal caregiver. The study attempted to understand the independence of older women through the perspective of both informal caregivers and the older women themselves. The following eight variables were measured: 1) the older women’s independence (dependent variable); 2) the relationship between older women and their informal caregivers (independent variable); 3) roles of both the informal caregiver and older women (independent variable); 4) the older women’s attitudes toward aging (independent variable); 5) the older women’s age identity (independent variable); 6) the older women’s health (control variable); 7) the older women’s level of social support (control variable); and 8) the older women’s level of depression (control variable). The variables were measured from the perspective of the older woman herself and her informal caregiver. This study used an ecological and developmental framework along with role theory to understand the interaction among the aforementioned variables through a cross-sectional design. The recruited older women participants of this study were receiving ongoing care and personal assistance from two large home care agencies located in Miami, FL. An analysis was conducted through a mixed-methods incorporated into the study design. The present study aimed to contribute to the understanding of how the relationship between older women and their informal caregivers influences older women’s ability to maintain independent outcomes. The primary finding of this study was that there were both positive and negative experiences within the relationship dynamic of older women and their informal caregivers and that this relationship was either unidirectional or bi-directional.

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. ^

A study of dual cultures in dyadic relations

Elderly caregiving, a fact of life for millions of Americans, has gained significance with the increase in the elderly population. Over 25 million family caregivers in the US, most of whom are women rearing their own children, care for severely ill or disabled family members. The increased flow of women into the labor force has caused this traditional role to be entrusted to hired caregivers, mainly home health aides. ^ This case study describes and explains the dyadic experiences of elderly Jewish clients and their Jamaican home health aides in a mixed-culture environment. The inquiry was conducted with a purposive sample of four dyads, their case manager, and the placement officer, all of whom were selected through a home care agency in Fort Lauderdale, Florida. Strategies of data collection including non-participant observation, interviews, document analysis, and researcher's journals. Data from verbatim transcription of interviews and field notes were coded, sorted into emic categories, and reduced as linkages were identified via cross-case comparison. Three major themes—mixed-culture experiences, relationship building and maintenance, and agency role perceptions—emerged from the interpretative analysis of the data. ^ Assertions from these findings include that dyads have established a range of relationships to meet their personal needs, expectations, and desires in these goal-driven relationships. Relationally, they have reached interactional synchrony with some achieving the ideal family-type bond. Cultural difference is but one of the many contextual variables in the home care environment, which has its own cultural norms and expectations. Conflicts transcend cultural difference and seemed more a factor of individual relational disposition. ^

Elder malnutrition: A meta analysis of studies using the nutrition screening initiative determine checklist

To demonstrate the extent of elder malnutrition risk in this country, a meta analysis of 30 studies that used the Nutrition Screening Initiative's "DETERMINE Your Nutritional Health Checklist" was conducted. The studies were divided into three categories: Elder Populations in Healthcare Related Systems (HS), Elder Meal Program Participants (MP), and General Community Residing Elder Population (GC). HS was sub-divided into Hospital Inpatient/Clinic Outpatient and Long Term Care/Home Care. The MP population were identified as Congregate or Home Delivered meal participants. Overall, results indicate that 63% of elders are at moderate (32%) or high (31 %) risk of malnutrition. Home Delivered Meal Participants and Hospital Inpatient/Clinic Outpatients are most likely to be at high risk of malnutrition (49.5% and 49.1%, respectively). Individuals least likely to be at high malnutrition risk are the General Community Residing Elder Population (17.5%) and Congregate Meal Participants (22.5%).

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 sociorecreation 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.

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. ^

A follow-up outcome evaluation of independent living services for foster care youth

This study aimed to evaluate the effectiveness of the Independent Living (IL) program targeting foster youths to prepare them for effective adulthood. The study employed a pre-post, two-group comparative research design. The IL group was composed of 49 young adults who participated in the IL or SIL (subsidized IL) program prior to their emancipation from foster care (mean age, 20.6 years). The comparison was made up of 18 young adults who experienced foster care but never participated in the IL or SIL programs (mean age, 20.2 years). Data were collected via a mailed survey that included the Daniel Memorial Independent Living Assessment (DMILA) and an additional questionnaire developed by the researcher. The study also examined: (1) why youth in foster care do not participate in IL programs, (2) how participating youth evaluate IL services and what recommendations they make to improve services, and (3) the internal consistency of the DMILA. Results suggest that the DMILA assessment has mediocre reliability. IL program participation is associated with better educational, employment, income, housing, early parenting-prevention, transportation, anger control, criminal-prevention, and self-evaluation outcomes. However, IL participation is not associated with better social support, perceived parenting competence, substance abuse-prevention, sexual risk-prevention outcomes, increased knowledge in money management skills, job seeking and job maintenance skills, interpersonal skills, or lower depression. Results also suggest that the outreach activities of the IL program may be flawed. IL participants reported the IL program was doing best in educational preparation, criminal involvement prevention, and money management preparation and least well in parenting preparation, housing preparation, employment preparation, and substance abuse prevention. To improve services, youths recommended primarily that IL counselors develop closer relationships with youths, that IL training better address organizational skills, and that monthly subsidy be raised and SIL eligibility requirements softened. The study's political context and limitations are also discussed and implications are derived regarding prevention, intervention, outreach, mentorship, empowerment, cross-systems collaboration, and future research. ^

From foster care to college: Young adults' perceptions of factors that impacted their academic achievement

Despite increased Federal, state, and local efforts in the United States to improve outcomes among young adults who emancipate from foster care, low educational achievement and attainment continue to characterize this vulnerable subpopulation. Approximately 50% of foster children do not obtain a high school diploma or a general equivalency diploma (GED). Only about 20% of former foster children enroll in college, compared to 60% of youth not in foster care. The purpose of this study was to explore, describe and explain the perceptions of college students who had lived in foster care regarding the external and internal influences that impacted their academic achievement and attainment. Interviews with a purposefully selected sample of 24 Florida college students were conducted; transcripts were coded and analyzed thematically. Findings included that participants experienced a particular set of external and internal influences at school, in foster care settings, and in the community. External influences include interactions with (a) multiple non-relative guardians and case workers, (b) relatives, especially siblings, (c) mentors, (d) teachers and school administrators, and (e) school counselors. Internal influences include the barriers of anger and bad behavior and a newly identified set of internal characteristics, called success strengths by the researcher, that promote academic achievement and college attainment. Implications are as follows: (a) Future theory on academic achievement concerning foster youth should reflect the importance of the affective aspect of school interactions. (b) Policy should mandate awareness training for educators, social workers, and other adults who work with former foster youth to increase professionals' awareness of the barriers, supports and success strengths that impact the academic lives of children and youth in foster care. (c) Adult educators and human resource development professionals should develop and implement appropriate new education and training materials and interventions. Future research may include a similar interview with former foster youth who graduated from college and with foster youth who leave school before graduating. Finally, a study with a nationally representative sample of college enrolled former foster children should be conducted to determine the relative importance of the barriers, supports and success strengths identified in this study.

From Foster Care to College: Perceptions of Young Adults on Their Academic Success

Perceptions of college students, all former foster youth, regarding influences that impacted their academic attainment are described. Themes involve external interactions and internal influences, including a newly identified set of internal characteristics, “success strengths,” that promote college attainment. The Foster Youth Academic Achievement Model is introduced.

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 qualitative study of the impact of an educational intervention on older parents of adults with disabilities engaged in the phenomenon of future-care planning

This phenomenological study describes the impact of an educational intervention on the day-to-day experiences of older parent caregivers of adults with developmental disabilities who were engaged in the process of future-care planning. Qualitative strategies of individual and focus group interviewing were used with a purposive sample of older caregivers. Participants were members of an existing parent support group. Twenty-three caregivers representing 18 families were queried before and after the education program. The disabilities represented were mental retardation, cerebral palsy and autism. Parents whose children live at or away from home were included. The intervention was conducted on five Saturdays over a two month period; the duration of the study was five months. Findings used typical words of the respondents from their individual and focus group interviews to describe feelings, attitudes and experiences in making future-care plans. Data from verbatim transcriptions and researcher's field notes were coded, analyzed, sorted into themes, and subjected to interpretive analysis. Respondents showed a positive change in attitudes and actions after participating in the education program, regardless of their initial stage in care planning. Fears were replaced by hope and determination; hesitation and ineptitude by feelings of competence and confidence; and procrastination and delay by purposeful actions. Other key findings: use of a planning document greatly aided caregivers; barriers to planning were often intrinsic and amenable to education; residential plans were the most difficult aspect of planning; listening to the experiences of other parent caregivers was helpful; and making burial plans for their offspring was one aspect of planning parents wished to do themselves. ^

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. ^