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.

Determinants of resource development strategies in nonprofit organizations: An analysis of children, youth and family services

This study is an exploratory analysis of an operational measure for resource development strategies, and an exploratory analysis of internal organizational contingencies influencing choices of these strategies in charitable nonprofit organizations. The study provides conceptual guidance for advancing understanding about resource development in the nonprofit sector. The statistical findings are, however, inconclusive without further rigorous examination. A three category typology based on organization technology is initially presented to define the strategies. Three dimensions of internal organizational contingencies explored represent organization identity, professional staff, and boards of directors. Based on relevant literature and key informant interviews, an original survey was administered by mail to a national sample of nonprofit organizations. The survey collected data on indicators of the proposed strategy types and selected contingencies. Factor analysis extracted two of the initial categories in the typology. The Building Resource Development Infrastructure Strategy encompasses information technology, personnel, legal structures, and policies facilitating fund development. The Building Resource Development Infrastructure Strategy encompasses the mission, service niche, and type of service delivery forming the basis for seeking financial support. Linear regressions with each strategy type as the dependent variable identified distinct and common contingencies which may partly explain choices of strategies. Discriminant analysis suggests the potential predictive accuracy of the contingencies. Follow-up case studies with survey respondents provide additional criteria for operationalizing future measures of resource development strategies, and support and expand the analysis on contingencies. The typology offers a beginning framework for defining alternative approaches to resource development, and for exploring organization capacity specific to each approach. Contingencies that may be integral components of organization capacity are funding, leadership frame, background and experience, staff and volunteer effort, board member support, and relationships in the external environment. Based on these findings, management questions are offered for nonprofit organization stakeholders to consider in planning for resource development. Lessons learned in designing and conducting this study are also provided to enhance future related research. ^

Sexual Health Education and Family Planning: A Vital Component of the Healthy Start Program

The paper will describe the Healthy Start program as a comprehensive sex education program and implications for preventing subsequent adolescent pregnancies.

Parent's emotional expressiveness and child, parent, and family functioning

This study investigated associations between parents' expressed emotion during a series of play tasks with their child, and psychological assessments of parent, child, and family functioning. Parent and child dyads included 41 families with a child between ages 4 and 12 who sought a developmental assessment at the Youth and Family Development Program laboratory at Florida International University. Videotaped dyadic play tasks were rated, using an Emotional Expressiveness Rating Scale (EERS) developed for this study, for parents' communication of criticism, hostility, emotional over-involvement, indifference, and warmth toward their child. Associations between parent expressed emotion and parent, child, and family functioning were assessed. Negative expressed emotion in parents, particularly criticism, was correlated with externalizing child problems, high parental stress, and family conflict; parent warmth was correlated with parents' feeling rewarded by their child, and with family cohesion. The implications for mental health research and practice with parents and children are discussed.

New trends in health architecture for children and the effects of the built environment on young patients

The objective of this thesis was to investigate the effects of the built environment on the outcome of young patients. This investigation included recent innovations in children's hospitals that integrated both medical and architectural case studies as part of their design issues. In addition, the intervention responded to man-made conditions and natural elements of the site. The thesis project, a Children's Rehabilitation Hospital, is located at 1500 N.W. River Drive in Miami, Florida. The thesis intervention emerged from a site analysis that focused on the shifting of the urban grid, the variation in scale of the immediate context and the visual-physical connection to the river's edge. Furthermore, it addressed the issues of overnight accommodation for patient's families, as well as sound control through the use of specific materials in space enclosures and open courtyards. The key to the success of this intervention lies in the special attention given to the integration between nature and the built environment. Issues such as the incorporation of nature within a building through the use of vistas and the exploitation of natural light through windows and skylights, were pivotal in the creation of a pleasant environment for visitors, employees and young patients.

Blood Lead Levels in Children and Environmental Lead Contamination in Miami Inner City, Florida

Studies have shown that the environmental conditions of the home are important predictors of health, especially in low-income communities. Understanding the relationship between the environment and health is crucial in the management of certain diseases. One health outcome related to the home environment among urban, minority, and low-income children is childhood lead poisoning. The most common sources of lead exposure for children are lead paint in older, dilapidated housing and contaminated dust and soil produced by accumulated residue of leaded gasoline. Blood lead levels (BLL) as low as 10 μg/dL in children are associated with impaired cognitive function, behavior difficulties, and reduced intelligence. Recently, it is suggested that the standard for intervention be lowered to BLL of 5 μg /dl. The objectives of our report were to assess the prevalence of lead poisoning among children under six years of age and to quantify and test the correlations between BLL in children and lead exposure levels in their environment. This cross-sectional analysis was restricted to 75 children under six years of age who lived in 6 zip code areas of inner city Miami. These locations exhibited unacceptably high levels of lead dust and soil in areas where children live and play. Using the 5 μg/dL as the cutoff point, the prevalence of lead poisoning among the study sample was 13.33%. The study revealed that lead levels in floor dust and window sill samples were positively and significantly correlated with BLL among children (p < 0.05). However, the correlations between BLL and the soil, air, and water samples were not significant. Based on this pilot study, a more comprehensive environmental study in surrounding inner city areas is warranted. Parental education on proper housecleaning techniques may also benefit those living in the high lead-exposed communities of inner city Miami.

A content analysis of selected recreational therapy journals from 1990 to 1998: The extent to which children and youth are included

This paper presents an analysis of articles involving children and youth in the last 9 years (1990–1998) of professional literature in recreational therapy. A total of 539 articles were analyzed to examine the authors, subjects, methods, and outcomes of therapeutic recreation studies published in three selected journals: Therapeutic Recreation Journal, Leisure Studies , and Leisure Sciences. A central finding was that the literature involving children and youth was very under-represented in the journals. Only 6.5% of the articles targeted children and youth; of this group, approximately two thirds were research-based; the remaining articles were conceptual papers. The findings are discussed in terms of the need for future scholarships in recreational therapy to target children and youth, including those with disabilities. ^

The influence of spirituality, race/ethnicity and religion on parent grief and mental health at one and three months after their infant's/child's death in the neonatal or pediatric intensive care unit

The death of an infant/child is one of the most devastating experiences for parents and immediately throws them into crisis. Spiritual and religious coping strategies may help parents with their loss. The purposes of this longitudinal study were to: (1) describe differences in bereaved parents' use of spiritual coping strategies across racial/ethnic and religious groups, mother/father dyads, and time—one (T1) and three (T2) months after the infant's/child's death in the neonatal (NICU) or pediatric intensive care unit (PICU), and (2) test the relationship between spiritual coping strategies and grief, mental health, and personal growth for mothers and fathers at T1 and T2. A sample of 126 Hispanic, Black/African American, and White parents of 119 deceased children completed the Spiritual Coping Strategies scale, Beck Depression Inventory-II, Impact of Events-Revised, Hogan Grief Reaction Checklist, and a demographic form at T1 and T2. Controlling for race and religion, spiritual coping was a strong predictor of lower grief, better mental health, and greater personal growth for mothers at T1 and T2 and lower grief for fathers at T1. The findings of this study will guide bereaved parents to effective strategies to help them cope with their early grief.

Time spent with children and working parents' willingness to medicate ADHD-like behaviors

ADHD, which refers to one of the most common behavioral problems among children, is subject to controversial arguments surrounding its nature and its primary treatment with psychiatric medications. At the heart of the problem are parents, whose responsibility includes providing pivotal information to clinicians for the diagnosis and deciding whether their children will receive medications. This study investigates the relationship between working parents' willingness to medicate ADHD-like behaviors and the time they are able to spend with their children during a regular workday. The importance of time spent with children derives from the observation that it is likely to influence not only parents' judgments of their children's behaviors but the behaviors themselves. The relationship was investigated using a subsample of 551 working parents (452 parents reporting no child with problems and 99 parents reporting child with problems) drawn from a population-based telephone survey of parents in the Miami-Dade and Broward counties of Florida. A series of path analyses, controlling for selected socio-demographic and family variables, showed that spending more time with their children during a regular workday was significantly related to being less willing to medicate ADHD-like behaviors. The association was stronger for parents reporting having a child with emotional and behavioral problems (β = −.20) and faint for other parents (β = −.06). The interpretation of the study findings emphasizes the vagueness surrounding the nature of ADHD and the events and procedures leading to the diagnosing of a child, as well as the delicate situations in which parents find themselves.