It is estimated that 20% to 30% of the children and adolescents in this country suffer from a chronic disease or health condition. These conditions can affect children throughout their lives and also affect the family unit. The increase in day-to-day caregiving requirements, the complexities of disease management activities, lifestyle, and family dynamics, alone or collectively, may influence long-term health outcomes. Furthermore, chronic health conditions may affect the financial status, and social, community, and school interactions of the child and the family. The child or adolescent is affected personally by the pathology of the disease, side effects or treatment, and by the required lifestyle and health management adaptations. The family is involved in the child's illness management through requirements for care assistance, supervision/guidance, travel and time from work for health visits or hospitalizations, cost of care, and the effect of these requirements on family dynamics and lifestyle.
Over the past several years, many studies have examined the potential impact of childhood chronic illness on parents and families (for review see Kazak et al., 2003). In general, the literature has delineated a myriad of stressors that parents may experience, including financial stress, role strains, separations, adjustment to the various components of the medical system, interruptions in daily routines and plans for the future, and the general uncertainty with regard to the child’s prognosis. All of these possible experiences may lead directly and indirectly to anxiety, depression, post-traumatic-stress, hopelessness, and feelings of loss of control. What is not known is how single, or “lone,” parents trying to navigate the complex needs of maintaining a home, family, and a chronically ill child adapt to these challenges.
The proportion of children in two-parent families has decreased from 85% to 69% in the last 30 years; thus nearly 3 in 10 children live in single parent homes (Shudy et al., 2006). The most common type of single parent home is one with a mother present, although single father homes are among the fastest growing type of family situation in this country (Garasky, 1996). Single parenthood may occur as a result of loss (death, separation, divorce, or abandonment by one parent) or by choice (adoption, assisted reproductive technology, choosing to become or remain pregnant without a partner).
In general, the field of pediatric chronic illness has not kept pace with the demographic changes that now characterize our society; changes that have the potential to profoundly affect child and family functioning. A recent review of the impact of family structure on family income revealed that financial resources for lone parents were only 55% of those of married-parent families (Thomas & Sawhill, 2007). Even more striking, children in lone-parent families are more than four times as likely to live in poverty than those in married-parent families – across all race/ethnic categories (Thomas & Sawhill, 2007). These findings are particularly salient in the case of pediatric chronic illness, which frequently taxes the economic resources of the family under the best of conditions.
In response to the increasing number of children growing up in single parent households who must face challenges associated with chronic illness, and the dearth of literature specifically focused in this area, a one-day “think tank” was organized and led by Lori Wiener, Ph.D. (National Cancer Institute, Pediatric Oncology Branch) and Mary Jo Kupst, Ph.D. (Medical College of Wisconsin) in collaboration with the Children’s Inn at the National Institutes of Health. The think tank was generously sponsored by the Andre Sobel River of Life Foundation. A distinguished group of multidisciplinary experts in pediatric psychosocial research of chronic illness was invited to attend a one-day meeting that was designed to address three primary questions pertaining to single parents of children living with a chronic or life-limiting illness: “What do we know?”, “What do we need to know?” and “Where do we go from here?” Each expert was to respond to these three basic and fundamental questions from his/her own clinical experiences and programs of research. We were humbled by the dearth of knowledge about the complexity and diversity of the variables affecting the needs and adjustment of all parents, particularly those who care for a child with a chronic illness by themselves. Furthermore, while we all recognized the challenges that single parents must endure in negotiating the financial stressors of having a child with a chronic illness, and the caregiving of multiple children in a family, we realized a primary challenge was to define who should be considered a “single parent” and how variables such as socioeconomic status, distance from home to hospital, presence of other children or support figures altered the potential impact on a single-individual meeting the needs of a chronically ill child. As researchers, we also recognized that we had failed to examine systematically the challenges that these individuals must face. Indeed, there was consensus that this is an overlooked population much in need of our careful attention.
While the initial goal of the “think tank” was to develop a limited institutional study to examine the psychosocial correlates of single parents dealing with pediatric chronic illness, by the end of the day it was clear that a need to better understand the complexity of this issue exists, and therefore, the development of a research study was deferred. We now provide an overview of what we learned, including a review of the extant literature in the area of single parenting and chronic illness, concluding with recommendations for investigators who work with chronically ill children and their families.