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. ^

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.