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. ^

Impact of nutrition education on knowledge and eating patterns in HIV-infected individuals

Acquired Immune Deficiency Syndrome (AIDS) and impaired or threatened nutritional status seem to be closely related. It is now known that AIDS results in many nutritional disorders including anorexia, vomiting, protein-energy malnutrition (PEM), nutrient deficiencies, and gastrointestinal, renal, and hepatic dysfunction (1-7, 8). Reversibly, nutritional status may also have an impact on the development of AIDS among HIV-infected people. Not all individuals who have tested antibody positive for the Human Immunodeficiency Virus (HIV) have developed AIDS or have even shown clinical symptoms (9, 10). A poor nutritional status, especially PEM, has a depressing effect on immunity which may predispose an individual to infection (11). It has been proposed that a qualitatively or quantitatively deficient diet could be among the factors precipitating the transition from HIV-positive to AIDS (12, 13). The interrelationship between nutrition and AIDS reveals the importance of having a multidisciplinary health care team approach to treatment (11), including having a registered dietitian on the medical team. With regards to alimentation, the main responsibility of a dietitian is to inform the public concerning sound nutritional practices and encourage healthy food habits (14). In individuals with inadequate nutritional behavior, a positive, long-term change has been seen when nutrition education tailored to specific physiological and emotional needs was provided along with psychological support through counseling (14). This has been the case for patients with various illnesses and may also be true in AIDS patients as well. Nutritional education specifically tailored for each AIDS patient could benefit the patient by improving the quality of life and preventing or minimizing weight loss and malnutrition (15-17). Also, it may influence the progression of the disease by delaying the onset of the most severe symptoms and increasing the efficacy of medical treatment (18, 19). Several studies have contributed to a dietary rationale for nutritional intervention in HIV-infected and AIDS patients (2, 4, 20-25). Prospective, randomized clinical research in AIDS patients have not yet been published to support this dietary rationale; however, isolated case reports show its suitability (3). Furthermore, only nutrition intervention as applied by a medical team in an institution or hospital has been evaluated. Research is lacking concerning the evaluation of nutritional education of either non-institutionalized or hospitalized groups of persons who are managing their own food choice and intake. This study compares nutrition knowledge and food intakes in HIV-infected individuals prior to and following nutrition education. It was anticipated that education would increase the knowledge of nutritional care of AIDS patients and lead to better implementation of nutrition education programs.

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. ^