Support services for the care of chronically ill children
- Margaret R Ugalde, RN, DrPH
Margaret R Ugalde, RN, DrPH
- Assistant Professor of Pediatrics
- Baylor College of Medicine
Technological advances have dramatically improved survival rates for children with life-threatening conditions caused by congenital anomalies, disease, or injury . As a result, the population of children living with chronic illness or disability is growing, and the vast majority of these children live at home with their families . A trend toward earlier discharge of children from hospitals and rehabilitation facilities to outpatient or home healthcare also exists. Thus, primary care clinicians increasingly are expected to coordinate the care for chronically ill children [1,2].
Many medically fragile children who require complex care are receiving that care at home. Home care is viewed to be more cost-effective than is institutional care [3-7]. Families are required to perform care that used to be provided by hospital staff [8,9]. More families will be asked to care for chronically ill and disabled children at home as the family-centered care model that has been adopted by pediatric hospitals is extended into the home [8,10,11]. Caring for these children in the home places additional strain on daily family life. The medically fragile child's "special" routine and healthcare needs must be incorporated into the normal routines of work, school, transportation, child care, and housekeeping [10,11].
The particular needs of families caring for chronically ill children and the resources and support services available to them are reviewed here. The medical, developmental, psychosocial, and financial aspects of caring for children with special needs are discussed separately. (See "Children with special health care needs".)
Children with chronic illness have been defined as those "who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally" [1,2]. Approximately 27 percent of children in the United States younger than 18 years of age (12.6 million children) met this definition in 2006 .
The prevalence of childhood disability is higher for boys, school-age children, children from low-income and single-parent families, and children in rural communities . Childhood disability most frequently is associated with respiratory disease and mental impairment [1,2,13-15].
- Bramlett MD, Blumberg SJ. Prevalence of children with special health care needs in metropolitan and micropolitan statistical areas in the United States. Matern Child Health J 2008; 12:488.
- Bethell CD, Read D, Blumberg SJ, Newacheck PW. What is the prevalence of children with special health care needs? Toward an understanding of variations in findings and methods across three national surveys. Matern Child Health J 2008; 12:1.
- Benedict RE. Quality medical homes: meeting children's needs for therapeutic and supportive services. Pediatrics 2008; 121:e127.
- Homer CJ, Klatka K, Romm D, et al. A review of the evidence for the medical home for children with special health care needs. Pediatrics 2008; 122:e922.
- Norlin C, Romeo A, Rocha R. Developing a web site to support the implementation of medical home. AMIA Annu Symp Proc 2007; :563.
- Nageswaran S, Farel A. Access to a medical home for infants and young children with special healthcare needs. Infants Young Child 2007; 20:222.
- Wang G, Watts C. Genetic counseling, insurance status, and elements of medical home: analysis of the national survey of children with special health care needs. Matern Child Health J 2007; 11:559.
- Shattuck PT, Parish SL. Financial burden in families of children with special health care needs: variability among states. Pediatrics 2008; 122:13.
- Antonelli RC, Stille CJ, Antonelli DM. Care coordination for children and youth with special health care needs: a descriptive, multisite study of activities, personnel costs, and outcomes. Pediatrics 2008; 122:e209.
- Hintz SR, Kendrick DE, Vohr BR, et al. Community supports after surviving extremely low-birth-weight, extremely preterm birth: special outpatient services in early childhood. Arch Pediatr Adolesc Med 2008; 162:748.
- Inkelas M, Raghavan R, Larson K, et al. Unmet mental health need and access to services for children with special health care needs and their families. Ambul Pediatr 2007; 7:431.
- Van Cleave J, Gortmaker SL, Perrin JM. Dynamics of obesity and chronic health conditions among children and youth. JAMA 2010; 303:623.
- Skinner AC, Slifkin RT. Rural/urban differences in barriers to and burden of care for children with special health care needs. J Rural Health 2007; 23:150.
- Liu CL, Zaslavsky AM, Ganz ML, et al. The financial implications of availability and quality of a usual source of care for children with special health care needs. Matern Child Health J 2008; 12:243.
- Ngui EM, Flores G. Unmet needs for specialty, dental, mental, and allied health care among children with special health care needs: are there racial/ethnic disparities? J Health Care Poor Underserved 2007; 18:931.
- Warfield ME, Gulley S. Unmet need and problems accessing specialty medical and related services among children with special health care needs. Matern Child Health J 2006; 10:201.
- Houtrow AJ, Kim SE, Chen AY, Newacheck PW. Preventive health care for children with and without special health care needs. Pediatrics 2007; 119:e821.
- Newacheck PW, Kim SE, Blumberg SJ, Rising JP. Who is at risk for special health care needs: findings from the National Survey of Children's Health. Pediatrics 2008; 122:347.
- Kalke T, Glanton A, Cristalli M. Positive behavioral interventions and supports: using strength-based approaches to enhance the culture of care in residential and day treatment education environments. Child Welfare 2007; 86:151.
- Canty-Mitchell J, Austin JK, Jaffee K, et al. Behavioral and mental health problems in low-income children with special health care needs. Arch Psychiatr Nurs 2004; 18:79.
- Clawson B, Selden M, Lacks M, et al. Complex pediatric feeding disorders: using teleconferencing technology to improve access to a treatment program. Pediatr Nurs 2008; 34:213.
- Kane D, Mosca N, Zotti M, Schwalberg R. Factors associated with access to dental care for children with special health care needs. J Am Dent Assoc 2008; 139:326.
- Liu CL, Zaslavsky AM, Ganz ML, et al. Continuity of health insurance coverage for children with special health care needs. Matern Child Health J 2005; 9:363.
- Kuhlthau K, Hill KS, Yucel R, Perrin JM. Financial burden for families of children with special health care needs. Matern Child Health J 2005; 9:207.
- Kogan MD, Newacheck PW, Honberg L, Strickland B. Association between underinsurance and access to care among children with special health care needs in the United States. Pediatrics 2005; 116:1162.
- Van Cleave J, Heisler M, Devries JM, et al. Discussion of illness during well-child care visits with parents of children with and without special health care needs. Arch Pediatr Adolesc Med 2007; 161:1170.
- Zaslow T, Dorey F, Limbos MA. Literacy-related activities among children with special healthcare needs. Infants Young Child 2008; 21:221.
- Margolis LH, Mayer M, Clark KA, Farel AM. The relationship between state capacity measures and allocations to children and youth with special needs within the MCH Services Block Grant. Matern Child Health J 2009; 13:435.
- American Academy of Pediatrics Council on Children With Disabilities, Cartwright JD. Provision of educationally related services for children and adolescents with chronic diseases and disabling conditions. Pediatrics 2007; 119:1218.
- Macon T, Miller JE, Gaboda D, et al. Is there differential retention of children with special health care needs in the State Children's Health Insurance Program? Pediatrics 2007; 120:e1217.
- Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics 2005; 115:1562.
- Konrad SC. What parents of seriously ill children value: parent-to-parent connection and mentorship. Omega (Westport) 2007; 55:117.
- Schmidt S, Thyen U, Chaplin J, et al. Cross-cultural development of a child health care questionnaire on satisfaction, utilization, and needs. Ambul Pediatr 2007; 7:374.
- Samuels RC, Liu J, Sofis LA, Palfrey JS. Immunizations in children with special health care needs in a medical home model of care. Matern Child Health J 2008; 12:357.