Financial Effects on Families of Children With Special Needs
Financial Effects on Families of Children With Special Needs
Introduction Over 10 million children in the United States have special health care needs (U.S. Department of Health & Human Services, 2008). Parents struggle to afford needed health care and wrestle with the dual responsibilities of caregiving and employment. Researchers from a variety of disciplines, health care, and social science, in particular, are analyzing what variables affect a family's ability to access needed health care while balancing work and caregiving.
Methods A systematic literature review was conducted on the past 11 years of research that examined insurance status, insurance type, family out-of-pocket expenses, employment outcomes (reductions in hours or stopping work all together), and the role of receiving care in a medical home.
Results It was found that private health insurance, more severe conditions, and specific diagnoses are related to increased expenses and employment changes. It was also found that receiving care in a medical home reduces both.
Discussion It is vital that clinicians and policy makers move forward in expanding the concept of the medical home model as a means to improving the well-being of families raising children with special health care needs.
One in five households in the United States with children is raising at least one child with a special health care need (CSHCN) (U.S. Department of Health & Human Services [USDHHS], Health Resources and Services Administration [HRSA], Maternal and Child Health Bureau [MCHB], 2008). This statistic translates into nearly 14% of U.S. children or more than 10 million CSHCN, defined by the MCHB 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" (McPherson et al., 1998, p. 138). Families with CSHCN struggle with a unique set of challenges including but not limited to accessing needed health services, keeping or getting adequate health insurance, dealing with caregiving burdens that can affect work levels of parents, and dealing with added financial pressures. Researchers and practitioners are starting to examine what might help alleviate these burdens. This article will examine what researchers have found regarding employment and financial burdens on families.
Researchers have started to examine which variables potentially moderate the impact on employment and financial well-being of families. Particularly interesting to researchers in the health care field is the examination of how health care is provided. Are there ways to better provide care that supports families and may allow parents to balance work and caregiving? One idea that is gaining ground is the provision of health care in what is called a "medical home." The concept of a medical or health care home is not new. It was originally conceptualized by the American Academy of Pediatrics (AAP) in 1967 as a method for improving the care of children with special needs (Backer, 2007). In 2002 the AAP published a definition of a medical home as care that is accessible, family-centered, coordinated, comprehensive, continuous, compassionate, and culturally effective (AAP, 2002). The National Association of Pediatric Nurse Practitioners (NAPNAP) released a position statement on the concept of the health care home model in 2009. According to NAPNAP (2009), a pediatric medical or health care home is a "model of care that promotes holistic care of children and their families where each patient/family has an ongoing relationship with a health care professional" (p. 23A).
The purpose of this review is to evaluate and summarize the most recent research in the peer-reviewed literature that pertains to employment and financial effects on families raising a CSHCN and to synthesize what is known about the potential moderating effects of receiving care in a medical home. The quantity of research on CSHCN has grown markedly during the past 10 years in part because of the availability of the first national survey of CSHCN (NSCSHCN) (USDHHS, HRSA, MCHB, 2008).
Abstract and Introduction
Abstract
Introduction Over 10 million children in the United States have special health care needs (U.S. Department of Health & Human Services, 2008). Parents struggle to afford needed health care and wrestle with the dual responsibilities of caregiving and employment. Researchers from a variety of disciplines, health care, and social science, in particular, are analyzing what variables affect a family's ability to access needed health care while balancing work and caregiving.
Methods A systematic literature review was conducted on the past 11 years of research that examined insurance status, insurance type, family out-of-pocket expenses, employment outcomes (reductions in hours or stopping work all together), and the role of receiving care in a medical home.
Results It was found that private health insurance, more severe conditions, and specific diagnoses are related to increased expenses and employment changes. It was also found that receiving care in a medical home reduces both.
Discussion It is vital that clinicians and policy makers move forward in expanding the concept of the medical home model as a means to improving the well-being of families raising children with special health care needs.
Introduction
One in five households in the United States with children is raising at least one child with a special health care need (CSHCN) (U.S. Department of Health & Human Services [USDHHS], Health Resources and Services Administration [HRSA], Maternal and Child Health Bureau [MCHB], 2008). This statistic translates into nearly 14% of U.S. children or more than 10 million CSHCN, defined by the MCHB 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" (McPherson et al., 1998, p. 138). Families with CSHCN struggle with a unique set of challenges including but not limited to accessing needed health services, keeping or getting adequate health insurance, dealing with caregiving burdens that can affect work levels of parents, and dealing with added financial pressures. Researchers and practitioners are starting to examine what might help alleviate these burdens. This article will examine what researchers have found regarding employment and financial burdens on families.
Researchers have started to examine which variables potentially moderate the impact on employment and financial well-being of families. Particularly interesting to researchers in the health care field is the examination of how health care is provided. Are there ways to better provide care that supports families and may allow parents to balance work and caregiving? One idea that is gaining ground is the provision of health care in what is called a "medical home." The concept of a medical or health care home is not new. It was originally conceptualized by the American Academy of Pediatrics (AAP) in 1967 as a method for improving the care of children with special needs (Backer, 2007). In 2002 the AAP published a definition of a medical home as care that is accessible, family-centered, coordinated, comprehensive, continuous, compassionate, and culturally effective (AAP, 2002). The National Association of Pediatric Nurse Practitioners (NAPNAP) released a position statement on the concept of the health care home model in 2009. According to NAPNAP (2009), a pediatric medical or health care home is a "model of care that promotes holistic care of children and their families where each patient/family has an ongoing relationship with a health care professional" (p. 23A).
The purpose of this review is to evaluate and summarize the most recent research in the peer-reviewed literature that pertains to employment and financial effects on families raising a CSHCN and to synthesize what is known about the potential moderating effects of receiving care in a medical home. The quantity of research on CSHCN has grown markedly during the past 10 years in part because of the availability of the first national survey of CSHCN (NSCSHCN) (USDHHS, HRSA, MCHB, 2008).
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