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.

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 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. ^

Effect of child care subsidies on price and quality of care for low -income families

This dissertation examines the effect of regulations, resource and referral agencies, and subsidies on price and quality of care in child care centers. This research is based on a carefully developed conceptual framework that incorporates the factors affecting the demand and supply of child care. The first step in developing this framework is sketching out the structural equations. The structural equations help us understand the underlying behavior of individuals and firms making a decision. The exogenous variables are vector of attributes relating to family characteristics, child characteristics, regulations, subsidy, community characteristics and prices of inputs. Based on the structural equations, reduced form equations are estimated to find the effect of each of the exogenous variables on each of the endogenous variables. Reduced form equations help us answer public policy questions. The sample for this study is from the 1990 Profile of Child Care Settings (PCCS) data in which 2,089 center based programs were interviewed.^ Child/Staff Ratio (Group Level). Results indicate that among subsidies, only the state subsidy per child in poverty has a significant effect on the child/staff ratio at the group level. Presence of resource and referral agencies also increase the child/staff ratio at the group level. Also when the maximum center group size regulation for 25-36 months becomes more stringent, the child/staff ratio at the group level decreases.^ Child/Staff Ratio (Center Level). When the regulations for the maximum child/staff ratio for age groups 13-24 months and 37-60 months become lax, the child/staff ratio for the center increases. As the regulation for maximum group size for infants becomes stringent, the child/staff ratio decreases. An interesting finding is that as the regulations for maximum group size for age groups 13-24 months and 25-36 months become stringent, the child/staff ratio for the center increases. Another significant finding is that when a center is located in a rural area the child/staff ratio is significantly lower.^ Center Weighted Average Hourly Fees. Maximum group size regulations for age groups 25-36 months and 37-60 months have a negative effect on center hourly fee. Maximum child staff regulations for age groups 13-24 months and 37-60 months have a negative effect on center hourly fee. Maximum child staff regulations for age groups 0-12 months and 25-36 months have a positive effect on center hourly fee. Findings also indicate that the center average hourly price is lower when there is a resource and referral agency present. Cost adjusted prekindergarten funds and JOBS child care subsidies have a negative effect on average hourly fee. Cost adjusted social services block grant and state subsidy per child in poverty have a positive effect on the average hourly price. A major finding of this dissertation is the interaction of subsidy and regulatory variables.^ Another major finding is that child/staff ratio at the group level is lower when there is an interaction between geographic location and nature of center sponsorship. ^

Effect of child care subsidies on price and quality of care for low -income families

This dissertation examines the effect of regulations, resource and referral agencies, and subsidies on price and quality of care in child care centers. This research is based on a carefully developed conceptual framework that incorporates the factors affecting the demand and supply of child care. The first step in developing this framework is sketching out the structural equations. The structural equations help us understand the underlying behavior of individuals and firms making a decision. The exogenous variables are vector of attributes relating to family characteristics, child characteristics, regulations, subsidy, community characteristics and prices of inputs. Based on the structural equations, reduced form equations are estimated to find the effect of each of the exogenous variables on each of the endogenous variables. Reduced form equations help us answer public policy questions. The sample for this study is from the 1990 Profile of Child Care Settings (PCCS) data in which 2,089 center based programs were interviewed. Child/Staff Ratio (Group Level): Results indicate that among subsidies, only the state subsidy per child in poverty has a significant effect on the child/staff ratio at the group level. Presence of resource and referral agencies also increase the child/staff ratio at the group level. Also when the maximum center group size regulation for 25-36 months becomes more stringent, the child/staff ratio at the group level decreases. Child/Staff Ratio (Center Level): When the regulations for the maximum child/staff ratio for age groups 13-24 months and 37-60 months become lax, the child/staff ratio for the center increases. As the regulation for maximum group size for infants becomes stringent, the child/staff ratio decreases. An interesting finding is that as the regulations for maximum group size for age groups 13-24 months and 25-36 months become stringent, the child/staff ratio for the center increases. Another significant finding is that when a center is located in a rural area the child/staff ratio is significantly lower. Center Weighted Average Hourly Fees: Maximum group size regulations for age groups 25-36 months and 37-60 months have a negative effect on center hourly fee. Maximum child staff regulations for age groups 13-24 months and 37-60 months have a negative effect on center hourly fee. Maximum child staff regulations for age groups 0-12 months and 25-36 months have a positive effect on center hourly fee. Findings also indicate that the center average hourly price is lower when there is a resource and referral agency present. Cost adjusted prekindergarten funds and JOBS child care subsidies have a negative effect on average hourly fee. Cost adjusted social services block grant and state subsidy per child in poverty have a positive effect on the average hourly price. A major finding of this dissertation is the interaction of subsidy and regulatory variables. Another major finding is that child/staff ratio at the group level is lower when there is an interaction between geographic location and nature of center sponsorship.