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 effects of a family-based educational intervention on the prevention of lead poisoning in children

The effects of lead exposure may endure through one's lifetime and can negatively effect educational performance. While the link between the cause and effects of lead poisoning has been identified, the application of lead health education as the mechanism of disease prevention has not. The purpose of this study was to examine whether caregiver participation in a family-based educational intervention can result in decreased lead exposure in low socioeconomic children. ^ Participants (n = 50) were caregivers of children 12 to 36 months of age. They were randomly selected from an urban clinic and randomly assigned to either a treatment or control group. The experimental design of this study involved two clinic visits. Parents in the treatment group were given the educational intervention during the first clinic visit while those in the control group were given the intervention during the second clinic visit. The intervention was reinforced with a lead education brochure coupled with a video on childhood lead poisoning. One instrument was used to test parental knowledge of lead poisoning both pre- and post-intervention. Blood lead levels in pediatric participants were tested using two blood lead screens approximately three to four months apart determined by well-child check-up schedules. ^ Findings from the analysis of variance showed the interaction between the change in blood lead level between the children's first and second clinic visits and the treatment level. This demonstrated a significant interaction between the differences of first and second clinic visits blood lead levels and the presence or absence of the educational intervention. ^ The findings from an analysis of covariance support that caregivers in the treatment group have significantly higher scores on the second clinic visit scores on the CLKT than the caregivers in the control group. These data suggest that the educational treatment is effective in increasing the knowledge of caregivers about the dangers of lead poisoning and the strategies for lead poisoning prevention. ^ Conclusions indicate that the education of adult caregivers can affect blood lead levels of children, the educational treatment increased the knowledge of caregivers, caregivers were able to carry out procedures taught, and caregivers retained knowledge over time. ^

The impact of a family home-learning program on levels of parental/caregiver efficacy

This study sought to determine if participation in a home education learning program would impact the perceived levels of parental self-efficacy of parents/caregivers who participate in the completion of home-learning assignments and increase their levels of home-learning involvement practices. Also, the study examined the relationship between the parental involvement practice of completing interactive home-learning assignments and the reading comprehension achievement of first grade students. A total of 146 students and their parents/caregivers representing a convenience sample of eight first grade classes participated in the study. Four classes (n=74) were selected as the experimental group and four classes (n=72) served as the control group. There were 72 girls in the sample and 74 boys and the median age was 6 years 6 months. The study employed a quasi-experimental research design utilizing eight existing first grade classes. It examined the effects of a home-learning support intervention program on the perceived efficacy levels of the participating parents/caregivers, as measured by the Parent Perceptions of Parent Efficacy Scale (Hoover-Dempsey, Bassler, & Brissie, 1992) administered on a pre/post basis. The amount and type of parent involvement in the completion of home assignments was determined by means of a locally developed instrument, the H.E.L.P. Parent Involvement Home-learning Scale, administered on a pre/post basis. Student achievement in reading comprehension was measured via the reading subtest of the Brigance, CIB-S pre and post. The elementary students and their parents/caregivers participated in an interactive home-learning intervention program for 12 weeks that required parent/caregiver assistance. Results revealed the experimental group of parents/caregivers had a significant increase in their levels of perceived self-efficacy, p<.001, from the pre to post, and also had significantly increased levels of parental involvement in seven home-learning activities, p<.001, than the control group parents/caregivers. The experimental group students demonstrated significantly higher reading levels than the control group students, p<.001. This study provided evidence that interactive home-learning activities improved the levels of parental self-efficacy and parental involvement in home-learning activities, and improved the reading comprehension of the experimental group in comparison to the control.

The Impact of a Family Home-learning Program on levels of Parental/Caregiver Efficacy

This study sought to determine if participation in a home education learning program would impact the perceived levels of parental self-efficacy of parents/caregivers who participate in the completion of home-learning assignments and increase their levels of home-learning involvement practices. Also, the study examined the relationship between the parental involvement practice of completing interactive home-learning assignments and the reading comprehension achievement of first grade students. A total of 146 students and their parents/caregivers representing a convenience sample of eight first grade classes participated in the study. Four classes (n=74) were selected as the experimental group and four classes (n=72) served as the control group. . There were 72 girls in the sample and 74 boys and the median age was 6 years 6 months. The study employed a quasi-experimental research design utilizing eight existing first grade classes. It examined the effects of a home-learning support intervention program on the perceived efficacy levels of the participating parents/care¬givers, as measured by the Parent Perceptions of Parent Efficacy Scale (Hoover-Dempsey, Bassler, & Brissie, 1992) administered on a pre/post basis. The amount and type of parent involvement in the completion of home assignments was determined by means of a locally developed instrument, the H.E.L.P. Parent Involvement Home-learning Scale, administered on a pre/post basis. Student achievement in reading comprehension was measured via the reading subtest of the Brigance, CIB-S pre and post. The elementary students and their parents/caregivers participated in an interactive home-learning intervention program for 12 weeks that required parent/caregiver assistance. Results revealed the experimental group of parents/caregivers had a significant increase in their levels of perceived self-efficacy, p<.001, from the pre to post, and also had significantly increased levels of parental involvement in seven home-learning activities, p<.001, than the control group parents/caregivers. The experimental group students demonstrated significantly higher reading levels than the control group students, p<.001. This study provided evidence that interactive home-learning activities improved the levels of parental self-efficacy and parental involvement in home-learning activities, and improved the reading comprehension of the experimental group in comparison to the control.

The effect of self-operated prompts on leisure participation by persons with mental retardation

The use of permanent prompts for individuals with severe disabilities has been shown to be effective in acquiring new skills, improving the accuracy and maintenance of existing skills, and in eliminating the need for trainer prompts. However, this technology has not been evaluated for its potential impact in promoting leisure participation. In this study, two men with mental retardation were administered auditory and/or visual prompts to investigate their effect on increasing participation in a leisure activity. In addition, their performance was evaluated to establish whether continuous versus intermittent schedules of the prompts would influence participation. The data were collected using a partial interval observation system and evaluated using a multiple baseline and an alternating treatment design. While both men increased their participation modestly in the leisure activity, there was no substantial difference between the two prompting schedules. ^

Cuba’s Role in Venezuela’s Control of the Internet and Online Social Networks

The arrival of Cuba’s Information Technology (IT) and Communications Minister Ramiro Valdés to Venezuela in the Spring of 2010 to serve as a ‘consultant’ to the Venezuelan government awakened a new reality in that country. Rampant with deep economic troubles, escalating crime, a murder rate that has doubled since Chávez took over in 1999, and an opposition movement led by university students and other activists who use the Internet as their primary weapon, Venezuela has resorted to Cuba for help. In a country where in large part traditional media outlets have been censored or are government-controlled, the Internet and its online social networks have become the place to obtain, as well as disseminate, unfiltered information. As such, Internet growth and use of its social networks has skyrocketed in Venezuela, making it one of Latin America’s highest Web users. Because of its increased use to spark political debate among Venezuelans and publish information that differs with the official government line, Chávez has embarked on an initiative to bring the Internet to the poor and others who would otherwise not have access, by establishing government-sponsored Internet Info Centers throughout the country, to disseminate information to his followers. With the help of Cuban advisors, who for years have been a part of Venezuela’s defense, education, and health care initiatives, Chávez has apparently taken to adapting Cuba’s methodology for the control of information. He has begun to take special steps toward also controlling the type of information flowing through the country’s online social networks, considering the implementation of a government-controlled single Internet access point in Venezuela. Simultaneously, in adapting to Venezuela’s Internet reality, Chávez has engaged online by creating his own Twitter account in an attempt to influence public opinion, primarily of those who browse the Web. With a rapidly growing following that may soon reach one million subscribers, Chávez claims to have set up his own online trench to wage cyber space battle.