II: Examples of Nursing Science Shaping Health Policy
Self-Management of Illness in Teens
Margaret Grey and Kaitlyn Rechenberg
It is increasingly recognized that self- and family management of chronic conditions is an essential aspect of today’s health care (Newman, Steed, & Mulligan, 2009). Self-management has been defined in several ways in the literature, but it is usually defined as a dynamic, interactive, and daily process in which individuals engage to manage a chronic illness (Ruggiero et al., 1997). It also is defined as the ability of the individual, in conjunction with family, community, and health care professionals, to manage symptoms, treatments, lifestyle changes, and psychosocial, cultural, and spiritual consequences of health conditions. Corbin and Strauss (1991) were among the first to describe the work related to living with a chronic illness, and they defined the work as illness-related work (e.g., managing symptoms or crisis prevention, often named illness management), everyday life work (e.g., managing work or household tasks, often described as role management), and biographical work (e.g., managing emotions or identity). In a report from the Institute of Medicine (IOM), self-management was defined as including the tasks related to management of medical or behavioral treatments, role management, and emotional management (Adams, Greiner, & Corrigan, 2004).
Self-management by those with chronic conditions and their families is critical to ensuring the best possible outcomes. Thus, interventions that provide patients and their families with information and skills that enhance their ability to participate in their health care (e.g., communicate with health professionals, identify relevant information, manage symptoms, perform health behaviors, adhere to multiple treatment requirements) are increasingly recognized, not only as an essential component of management of chronic conditions, but also as part of secondary prevention and as a way of reducing the burden of chronic conditions on individuals, families, and communities. Accordingly, self- and family management of chronic conditions is receiving increased attention in health care reform. Supporting patient self-management is, for example, a key component of Wagner’s Chronic Care Model (Wagner et al., 2001) and the patient-centered medical home (Parekh, Goodman, Gordon, Koh, & HHS Intra-agency Workgroup on Multiple Chronic Conditions, 2011), and is one of the four goals in the U.S. Department of Health and Human Services framework for addressing complex chronic conditions (U.S. Department of Health & Human Services, 2011). An IOM report pointed to the importance of identifying family-level risk and protective factors that contribute to the health and well-being of family members (IOM & National Research Council, 2011).
Nursing plays a central role in addressing the challenges of chronic condition management, as reflected in the recent recommendations by the IOM and the National Institute of Nursing Research (IOM, 2010; NINR, 2011). The enhancement of individuals’ and families’ capacities to prevent or manage chronic conditions is a core activity of nursing that is supported by a growing body of knowledge. Enhancing self- and family management to improve quality of life and health outcomes continues to be a scientific priority supported by the NINR (2011). As noted in the new NINR Strategic Plan (2016), “NINR supports research to discover new ways to promote health and prevent disease” and “on new and better ways to manage symptoms of acute and chronic illness.” Both of these scientific areas require the understanding of and interventions to improve self-management.
Chronic conditions in childhood and adolescence require not just the development of self-management skills and behaviors for the affected youth, but also partnership with the family and health care providers to ensure better health and quality of life outcomes. In this chapter, we provide a review of prominent clinical trial research in the area of self-management of illness in teens and discuss those that have moved to public policy in detail.
SCOPE OF THE REVIEW
We searched the electronic databases Medline, Embase, PsychINFO, and CINAHL. The initial search terms included “self-management,” “self-efficacy,” and “chronic disease” (or chronic illness), and these were used consistently in each database when the search term matched a keyword. When “self-management” was not a keyword, the included search term was “self-management-ti.ab.” For example, the search strategy for PsychINFO was as follows: (a) exp Self-Management, (b) exp Self-Efficacy, and (c) exp Chronic Illness, with the following limitations: published in English within the past 10 years with participants 18 years old or younger. The entire search yielded 248 articles, 136 of which were eliminated because they either did not include a pediatric population, or because they were not topically appropriate. The final sample of the initial search consisted of 112 articles.
Keywords from articles in the final sample and from articles known to be important in the field were reviewed to ensure that all relevant search terms were included. The reference lists of included articles were also reviewed to assess for outliers. Two additional searches were conducted. Keywords from the second search were “psychoeducation,” “self-care,” and “chronic disease” (or chronic illness), and from the third search included “technology,” “Internet,” and “chronic disease” (or chronic illness). When “psychoeducation” was not a keyword, “psychoeducation-ti.ab.” was used. The same limitations described in the preceding paragraph were used. After removal of duplicates and review of articles for relevance, 13 articles were retained from the second search and four articles were retained from the third search. Detailed search strings for all databases are available upon request. In addition, we searched for articles authored by people well known to have conducted research with teens with chronic conditions.
The full citations of all identified titles, including bibliographic details, keywords, abstract, and web addresses (when available), were imported into the online bibliographic management program RefWorks™ and combined into a database. Articles were included if they were published between 2005 and 2015, evaluated a pediatric population, and included a self-management intervention. Excluded articles were (a) topically not appropriate, (b) written in a language other than English, (c) case studies, and (d) duplicates. The titles and abstracts of all articles were reviewed for relevance. Potentially relevant articles were retained for further review. The articles remaining in the final sample were read and organized into the following categories: (a) interventions, (b) exploratory/descriptive studies, (c) family focused, (d) transitional care, (e) review articles, and (f) other. This process was repeated for each search.
APPROACHES TO IMPROVING SELF-MANAGEMENT IN TEENS
Although self-management is critical across a variety of chronic conditions, and there are commonalities in self-management (Grey, Knafl, Schulman-Green, & Reynolds, 2015), the majority of interventions that have been tested in rigorous studies focus on a single condition. Therefore, we have divided our presentation of the studies according to conditions where there was at least one randomized clinical trial. Study details of the trials included in this review can be found in Table 7.1.
Asthma is the most common chronic illness in childhood. Management of asthma and avoiding high-risk exacerbations requires not only adherence to asthma medications but also to regular testing of respiratory capacity to detect early changes. Barriers to self-management in adolescents include being unwilling to give up things providers tell them to, difficulty in remembering to do self-management, and trying to forget that they have asthma (Rhee, Belyea, Ciurzynski, & Brasch, 2009). Thus, as is true with many conditions, youth with asthma require substantial self-management support.
Early approaches to self-management support for adolescents with asthma were educational in nature. In a meta-analysis of randomized controlled trials conducted prior to 2001, such educational interventions were found to be less effective in improving lung function and self-efficacy than more comprehensive behavioral self-management approaches (Guevara, Wolf, Grum, & Clark, 2003). Rhee et al. (2011) conducted a randomized clinical trial of a peer-lead asthma self-management program for adolescents compared to a conventional adult-led asthma program. The peer-led program yielded greater improvements in attitudes, quality of time, and spirometry results compared to the control group. In a more recent randomized clinical trial conducted in low-income urban African American schools, Velsor-Friedrich et al. (2012) found that both a coping skills training (CST) program and a traditional asthma education program led to increases in asthma-related quality of life, knowledge, and self-efficacy as well as decreases in symptom days and asthma-related school absences, but that CST did not improve on the educational program’s results.
TABLE 7.1 Descriptions of Trials of Self-Management Interventions in Teens
Type 1 Diabetes
Type 1 diabetes is also one of the most common severe chronic illnesses in children, affecting more than 200,000 youth in the United States (Chiang, Kirkman, Laffel, Peters, & Type 1 Diabetes Sourcebook authors, 2014). Youth with type 1 diabetes are at a high risk of negative psychosocial and physiological outcomes, particularly during adolescence. There are considerable demands associated with living with the condition. The treatment regimen is complex and demanding, requiring constant monitoring of blood glucose and carbohydrate intake, performing daily insulin therapy, and adjusting insulin dose to match diet and activity (Chiang et al., 2014). Appropriate self-management of these daily tasks helps to reduce short-and long-term diabetes-related complications (Grey, Whittemore, et al., 2009). In teens who are struggling for independence, self-management often suffers. Thus, improvement of self-management in youth has the potential not only to enhance diabetes management, but also to promote psychosocial adjustment.
CST is a method of improving competence and mastery by modifying ineffective coping behaviors into more constructive behaviors (Grey, Whittemore, et al., 2009). CST is based on social cognitive theory, which suggests that individuals can impact many areas of their lives, particularly with regard to coping style and health behaviors (Bandura, 1997). This approach aims to enhance self-efficacy through the development and rehearsal of new behaviors, such as the use of stress reduction techniques (Grey, Boland, Davidson, Li, & Tamborlane, 2000). These authors designed a CST program for youth with type 1 diabetes that aimed to improve sense of competence and mastery by modifying nonconstructive coping styles. The coping skills of social problem solving, stress management, assertiveness, and reducing negative thinking were emphasized. In a randomized controlled trial, Grey, Boland, et al. (2000) provided the training in small groups of two to three participants and compared their outcomes to a group receiving only intensive diabetes management. The trainer leading the CST groups used role playing to model appropriate coping behaviors. Six weekly sessions of approximately 1 hour were conducted, followed by monthly visits over the 12-month follow-up period. As compared to the control group, those who received CST had improved outcomes, including improved glycemic control, self-efficacy, and quality of life.
After determining the efficacy of group-based CST in youth with type 1 diabetes, this intervention was adapted to an Internet-based format (TEENCOPE) to reach teens who could not attend group sessions (Grey, Whittemore, Liberti, et al., 2012; Whittemore, Grey, Lindemann, Ambrosino, & Jaser, 2010). Another rationale for moving to the Internet was to deliver the intervention in a manner that would not interrupt clinic flow. Providing psychoeducational interventions in an online platform allowed for wider distribution of the program, especially as 93% of youth regularly use the Internet nationwide (Pew Research Center, 2015; Whittemore, Grey, et al., 2010). In a multisite randomized control trial, TEENCOPE was compared to an Internet-based diabetes management educational intervention (Managing Diabetes). Grey, Whittemore, Jeon, et al. (2013) reported the 18-month outcomes of this study, after participants were offered the opportunity to cross over to the other intervention at 12 months. There were no significant differences between groups at 18 months, with all participants showing improvements in glycosylated hemoglobin, quality of life, social acceptance, self-efficacy, perceived stress, and family conflict. It was concluded that these Internet interventions improved outcomes in youth with type 1 diabetes, but that both diabetes management education and CST were both necessary.
This research group then developed Teens.Connect, a combined program of TEENCOPE and Managing Diabetes (Whittemore, Liberti, et al., 2015). In a randomized controlled trial, Teens.Connect was compared to a website designed by the American Diabetes Association (ADA) that provided age-appropriate diabetes education. Six-month outcomes indicated that both Teens.Connect and the control program led to improved outcomes in youth with type 1 diabetes. Teens.Connect users, however, reported lower perceived stress than the control group.
Laffel et al. (1999) designed the Care Ambassador intervention to increase ambulatory medical visits for youth with type 1 diabetes. Care Ambassador participants received assistance with appointment scheduling and confirmation, and their families received help with logistical issues related to diabetes care. Compared to standard care, participants in the intervention group had lower glycosylated hemoglobin levels and a reduced risk of severe hypoglycemia and hospitalization at 24 months. Svoren et al. (2003) combined the Care Ambassador intervention with eight 30-minute psychoeducational modules delivered at each clinic visit by the Care Ambassadors. Three groups were compared: the Care Ambassador intervention, the Care Ambassadors plus the psychoeducational modules, and standard care. Both the Care Ambassadors and the Care Ambassadors plus psychoeducation module interventions improved clinic visit frequency compared to standard care. However, Care Ambassadors plus psychoeducation modules reduced rates of hospitalization and hypoglycemia as compared to the Care Ambassador intervention alone and standard care.