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Article Excerpt
The 2001 National Survey of Children with Special Health Care Needs estimates 13% of children in the United States live with special health care needs (Child and Adolescent Health Measurement Initiative, 2005). Recent data indicate this number continues to increase and may currently be as high as 18% of the U.S. population (Mayer, Skinner, & Slifkin, 2004). Further increases are predicted (Wise, 2004). Hospital and outpatient costs associated with care of these children account for over 50% of all child health care expenses (Neff, 2006). An even more important concern to parents may be the non-monetary costs of providing ongoing daily management.
Most care for children with special health care needs or chronic illnesses takes place in the home and requires parents/caregivers (hereafter referred to as "parents," although these persons may be biologic or adoptive parents, or other primary caregivers) to be prepared and self-confident in their ability to meet the physical, social, and psychological challenges they face in managing the child's condition. Ultimately, children also need these abilities so they can become active and effective collaborators in their own health care. Though health care systems may provide expert care for the child's medical needs and medication-specific education (McMullen et al., 2007), parents typically receive little preparation for the ongoing process of goal setting and bringing their child into shared care. In addition, clinicians and researchers know little of how to measure progress in parent-child shared management of the child's chronic illness. A few exceptions are disease-specific and age-limited (Barlow & Ellard, 2004; McQuaid et al., 2001), and thus, may not be applicable to a wide range of situations.
The purpose of this article is to describe findings from an effort to measure parent reports of three aspects of parent-child shared management from a non-disease specific approach, with parents of children ages 2 to 11 years who have a variety of special health care needs. Measures of reliability and validity of the tool and subscales are presented. Results from univariate and multivariable approaches then examined for persistent associations when demographic characteristics of the parent and child, aspects of the child's condition, parental self-efficacy, and coping with the chronic condition are taken into consideration. Implications for future nursing research, along with possible clinical practice considerations, are provided.
Theoretical Perspective
A review of prior empirical studies on the concept of parent-child shared management, shared responsibility, and/or self-management of childhood chronic conditions reveals that several major themes emerge across disease-specific research. First, child responsibility for the management of the condition typically increases with age (Anderson, Ho, Brackett, Finkelstein, & Laffel, 1997; Hanna & Guthrie, 2003; McQuaid et al., 2001; Miller-Johnson et al., 1994; Schilling, Knafl, & Grey, 2006; Wade, Islam, Holden, Kruszon-Moran, & Mitchell, 1999). The desire to assist with self-care has been shown to be strong, particularly in children in late middle school (Ayala et al., 2006). For example, studies of families with young children who have diabetes mellitus show a progression from all care being done by parents to care being managed primarily by the adolescent. During early adolescence, parents often manage diet, blood glucose monitoring, and medication, and they attend clinic visits. However, by late adolescence, many teens manage all care, and in many cases, attend clinic visits alone (Schilling et al., 2006).
Sharing of responsibilities can begin earlier. A study by Kieckhefer and Spitzer (1995) showed that children as young as 7 years of age with moderately severe asthma were beginning to take on a noteworthy level of responsibility for their condition management. During a clinic visit, children who gave a theoretically appropriate rationale for why a management behavior would improve their breathing reported a greater desire to take on more responsibility of their care after 6 weeks, as did their parents. Six months later, these same children reported higher self-efficacy about performing asthma management behavior.
A second theme in this body of work is that although adolescents are taking more responsibility for their chronic care, continued involvement by parents supports better physiologic control (such as blood glucose management) (Anderson et al., 1997; Dashiff, 2003). This reinforces the need for a true partnership between the parent and child, and it reveals the potential importance of a careful and well-planned transition of responsibility over the years rather than a quick "handover" when the child is thought to be cognitively ready. There are multiple studies that support this growing partnership in literature regarding diabetes mellitus management (Hanna, Juarez, Lenss, & Guthrie, 2003; Miller-Johnson et al., 1994), and results from asthma research are also consistent. It has been demonstrated that assigning children primary responsible for medication administration during the early school years has been linked to elevated asthma morbidity (Warman, Silver, & Wood, 2006), while actively involving parents in asthma education programs has been shown to enhance program impact (Bartholomew et al., 2006). Drawing the child over time into increased shared management could be seen as providing multiple transition points (Buford, 2004; Christian, D'Auria, & Fox, 1999).
In a prior theoretical article, Kieckhefer and Trahms (2000) discussed a third theme, the critical role of parents in advancing parent-child shared management activities from even the early years of childhood, regardless of the specific chronic illness. This framework emphasizes the leadership role parents take in moving the process forward in light of the child's unique developmental capabilities and the context of the family's daily life. In its "Call to Action," the Maternal and Child Health Bureau (2005) acknowledges this important parental role, noting parents are the most constant and important care providers and teachers of their children. Parental desire and knowledge are seen as necessary and supportive of actions to promote the child's incorporation into condition management (Kieckhefer, 1987). This notion that desire preceeds knowledge and action is consistent with other theories of behavior change (Bandura, 1986, 1997; Baranowski, Perry, & Parcell, 1997). This conceptualization emphasizes the benefits of viewing parent-child shared management as a process guided by the parent, which can be supported by health care professionals when the professionals are aware of the parent's motivation, knowledge, and current actions in support of parent-child shared management.
In combination, the literature supports management of childhood chronic conditions as an emerging shared responsibility between parent and child, a process that takes time and...
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