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.

Generational change among women in rural Valencia

The demise of Generalissimo Francisco Franco in 1975 and the subsequent democratization of Spain and its inclusion in the European Community have profoundly altered the patriarchal traditions of Spanish society. This study focused on the changes that women in Moixent, a rural village in Valencia, Spain, have experienced as a result of this liberalization of government policies, modernization, and economic development. ^ The purpose of this research was to illuminate the changing lives of two generations of women and their families in rural Valencia. The qualitative research techniques of participant observation, in-depth interviewing, and narrative analysis were used to present the different frames of reference of the two generations. Young working women in this rural community have come to rely on the help and support of their mothers in their attempts to work outside the home and improve their standard of living. As they enter Spain's modernizing economy their consumption patterns increasingly mimic those promoted by the global media, and especially television. As these young women take jobs outside the home they are having fewer children and dramatically altering the nation's demographic profile. ^ The older generation of women, who lived through decades of deprivation during the Spanish Civil War and Franco's long regime, support their daughters' new independence by assuming the arduous tasks of providing informal day care for their grandchildren and performing a variety of unpaid services for their daughters, including shopping, cooking, and housecleaning. This older generation of grandmothers is assuming a more difficult and demanding workload in what otherwise would be their retirement years. Hence they are the true enablers of their daughters' economic progress and modern patterns of consumption. ^ Other influences from the outside world have altered family farming practices. The participation of women in the harvests has declined, and most harvesting is now done by migrant foreign workers. As young women enter the workforce grandmothers strive to impart traditional values to their grandchildren, in the face of a rapidly changing world. ^

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 impact of parent participation in a hospital-based kangaroo care program on time spent with their preterm infant in the neonatal intensive care unit

Occupational therapists and other health professionals are faced with the challenge of helping parents cope with the birth of their preterm infant and fostering parent-infant bonding and attachment. Kangaroo care, or skin to skin contact, has the potential to minimize the delay in the parent-infant attachment process and facilitate more normal infant growth and development. The present study investigated the impact of parent participation in a hospital-based kangaroo care program on time spent with their preterm infant in the NICU. Fourteen parents with preterm infants in the NICU participated in the study. The results indicated that parents who participated in the kangaroo care program spent significantly more time with their infant than the parents who did not participate in the program (p $<$.022). In addition, parents in the kangaroo care group visited their infant more frequently than the control group (p $<$.037). However, the mean time with baby per day did not show a significant difference between the groups (p $<$.194). This information may assist occupational therapists in developing family-centered early intervention programs beginning in the NICU. ^

Health beliefs and health care options of disparate black communities in the United States

According to the 1999 U.S. Census, there were approximately thirty-three million African Americans and approximately 1.8 million non-Hispanic black immigrants in the United States. The 1997 U.S. Census estimated that there were as many as 554,000 foreign-born Haitians and 505,000 foreign-born Jamaicans living in the United States, mainly residing in Florida and New York. The U.S. Census claims that blacks are one of the largest emerging ethnic groups in America constituting at least twelve percent of this country's population. Because of this increase, their specific health beliefs and health care options are increasingly nationally significant. ^ In the present intra-black and inter-ethnic study, two hundred seventy African Americans, Haitian immigrants, and Jamaican immigrants residing in South Florida were quantitatively and qualitatively surveyed in order to investigate their health beliefs and health care options. According to the reviewed literature, the three black ethnic groups researched in this study have not been compared or contrasted before in relation to these beliefs and health care choices. ^ As was discovered by the present research, differing health beliefs and health care options were the cultural products of the ethnic differences of the researched communities. It was expected that differing health beliefs among the researched black groups might indicate disparate patterns of health care utilization of either western or non-western models. Additionally, it was projected that by investigating the health beliefs and the health care options of these emerging black ethnic groups, western health care providers in the United States could become better versed in medically servicing growing ethnically-disparate black populations. The study yielded results about the researched groups that supported major findings in the reviewed literature. The data were reported and examined, and theoretical generalizations from the data were discussed. The most important of these findings was that, within a race, health beliefs and health care options were determined by specific ethno-cultural variables dependent on national origins. ^

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. ^

Application and evaluation of an Institute of Medicine approach to dietary assessment and planning in long -term care

The primary purpose of these studies was to determine the effect of planning menus using the Institute of Medicine's (IOMs) Simple Nutrient Density Approach on nutrient intakes of long-term care (LTC) residents. In the first study, nutrient intakes of 72 subjects were assessed using Dietary Reference Intakes (DRIs) and IOM methodology. The intake distributions were used to set intake and menu planning goals. In the second study, the facility's regular menus were modified to meet the intake goals for vitamin E, magnesium, zinc, vitamin D and calcium. An experiment was used to test whether the modified menu resulted in intakes of micronutrients sufficient to achieve a low prevalence (<3%) of nutrient inadequacies. Three-day weighed food intakes for 35 females were adjusted for day-to-day variations in order to obtain an estimate of long-term average intake and to estimate the proportion of residents with inadequate nutrient intakes. ^ In the first study, the prevalence of inadequate intakes was determined to be between 65-99% for magnesium, vitamin E, and zinc. Mean usual intakes of Vitamin D and calcium were far below the Adequate Intakes (AIs). In the experimental study, the prevalence of inadequacies was reduced to <3% for zinc and vitamin E but not magnesium. The groups' mean usual intake from the modified menu met or exceeded the AI for calcium but fell short for vitamin D. Alternatively, it was determined that addition of a multivitamin and mineral (MVM) supplement to intakes of the regular menu could be used to achieve goals for vitamin E, zinc and vitamin D but not calcium and magnesium. ^ A combination of menu modification and MVM supplementation may be necessary to achieve a low prevalence of micronutrient inadequacies among LTC residents. Menus should be planned to optimize intakes of those nutrients that are low in an MVM, such as calcium, magnesium, and potassium. A MVM supplement should be provided to fill the gap for nutrients not provided in sufficient amounts by the diet, such as vitamin E and vitamin D. ^

Left to right: Nicole Poret, Kim de Mutsert, Dan Bond arriving in Flamingo after a day of sampling

This material is based upon work supported by the National Science Foundation through the Florida Coastal Everglades Long-Term Ecological Research program under Cooperative Agreements #DBI-0620409 and #DEB-9910514. This image is made available for non-commercial or educational use only.