Abstract
Self-management has become a central concept in individual and family-centered care. However, there are differences in both definitions and theoretical approaches that guide clinical practice and research in this emerging science. Review of theoretical approaches can assist clinicians and researchers to identify the framework or theory that best fits their approach to practice or research question. The evidence on self-management in spina bifida since the 2003 research priorities were first established is discussed and the implications for theory-based future practice and research delineated. Resources for collaborative research and practice in self-management are provided.
Keywords
Introduction
As health care professionals, we all face the challenge of supporting individuals and families as they learn self-management of their chronic condition. Self-management has become a central concept in individual and family-centered care. We see in clinical practice that effective self-management can optimize health outcomes, reduce health care costs and improve quality of life. Developing the skills, abilities and self-management behaviors for spina bifida self-management is a central task for adolescents and young adults transitioning into adulthood and for all who live with spina bifida (SB).
The science of self-management is relatively young, but even in its infancy professionals at the conference on the State of the Science on SB held in 2003 identified three self-management research priorities [1, 2]. These priorities were: a) Assessment of ways to measure self-management; b) Identifying factors that affect the teaching and learning of self-management; and c) optimizing use of technology and assistive devices in self-management. However as we approach optimizing self-management we as health care professionals may be using different definitions of self-management, basing our clinical care, interventions and research on different frameworks, models or theories, and addressing issues differently. While diversity brings richness, understanding the theoretical building blocks that are the foundation for approaching self-management are critical in our communication with each other and with individuals who have SB and their families.
Frameworks and theoretical approaches to self-management
Frameworks and theoretical approaches to self-management
Note: the above was adapted from Moore, Schiffman, Waldrop-Valverde, Redeker, McCloskey, Kim, Heitkemper, Guthrie, Dorsey, Docherty, Barton, Bailey, Austin, & Grady, 2016 with permission (Information on the Pediatric Self-Management Framework for Research Practice and Policy by Modi et al. was added to the original table).
Definitions and assumptions of two exemplar theoretical approaches to self-management
Core domains, proximal and distal outcomes for two exemplar theoretical approaches to self-management
Note: the information in this table was adapted from Individual and Family
Self-Management Theory (IFSMT) [12, 13] and
In part, the definition of self-management used depends on the focus of activities and population. At its core, self-management incudes handling, directing or controlling an activity. The pioneer in self-management, Dr. Kate Lorig, initially focused on arthritis but her work at the Chronic Disease Self-Management Program has created a national initiative addressing multiple chronic conditions [3, 4, 5, 6]. Dr. Lorig created a 6-session interactive educational series using a structured curriculum and delivered by individuals who had the chronic health condition(s). Although initially citing no specific definition, Dr. Lorig subsequently endorsed the Institute of Medicine’s definition: “Self-management is the tasks that individuals must undertake to live well with one or more chronic conditions. These tasks include having the confidence to deal with medical management, role management, and emotional management of their conditions” [7]. The peer-delivered educational program focused on consumer self-empowerment and improving the skills, abilities, and behaviors needed to control their condition. Self-efficacy was a core concept; development and ongoing self-evaluation of consumer-identified action plans a key strategy; and activities were used to enhance consumers’ communication with their health care providers. As interest in self-management grew, it became clear that health care providers and researchers viewed the self-management with “different colored glasses.” In work with transition age youth with SB, a definition for youth with diabetes was expanded for youth with SB to be: “An active daily and flexible process in which youth and their parents share responsibility and decision making for achieving control of their condition, health and well-being through a wide range of activities, and skills. The goal of this increasing responsibility is to develop self-management behaviors needed for transition to adulthood and independent living’ [8, 9]. Definitions of self-management have emerged from a number of contemporary frameworks or theoretical approaches with different focuses [10] (see Tables 1 and 2. A broad definition of Self-management for use in pediatrics proposed by Modi et al. focused on the interaction of health behaviors and related processes that are used to manage a chronic health condition [11] (see Table 2) while a comprehensive review of the literature on self-management [12] and subsequent work in a Center for Self-Management [13] yielded a comprehensive definition for research and practice (see Table 2). Initially outcomes of theoretical approaches were primarily individual [4, 14, 15] or primarily family [16] but have become more complex with individual and family outcomes [12, 13] or individual and health system outcomes [9]. However common to most of the theoretical approaches was a focus on the process of developing self-management behaviors.
Two exemplar contemporary theoretical approaches that have similarities and differences can be helpful to addressing self-management in practice and research, The Individual and Family Self-Management Theory (IFSMT) and the Pediatric Self-Management Framework (PSMF) [11, 12] (see Tables 2 and 3). Both use a socioecological approach representing the impact of social and environmental factors that affect health and well-being. They also integrate social cognitive theory. Both take the individual and family, social and physical environment or community into consideration when explaining individual self-management. In addition, a primary focus for both is the process, developing the skills and abilities needed to implement self-management behaviors. In the IFSMT process skills and abilities include self-efficacy (built on knowledge), self-regulation (goal setting, self-monitoring, decision-making, planning and action, and self-evaluation, emotional control) and social facilitation. The PSMF focuses on cognitive, emotional and social processes influenced by modifiable and nonmodifable factors in four domains (individual, family, community and health care systems). The IFSMT specifies self-management behaviors as a proximal outcome while in the PFSMF self-management behaviors operate within individual, family, community, and health care system domains, are a part of the process.
Several assumptions were explicitly delineated by the theoretical approach
or integrated into the discussion of self-management. Specifically, central to both was
the assumption that self-management behaviors have a causative effect on health outcomes
and that a primary goal of self-management was personal engagement and activity. In the
IFSMT, these behaviors mediate health outcomes. In the PSMF, they have a direct influence
on adherence which mediates the health outcomes. Other shared assumptions were that:
Individuals and families actively engage in self-managing conditions by collaborating with
health care providers to achieve personal health goals and that health care providers can
direct, encourage, and support engagement in self-management behaviors. However, there
were clear differences between the two approaches. First is the concept of adherence. In
the PSMF adherence, defined as the extent to which a person’s behavior coincides with
medical or health advice, is a key concept [11].
The authors propose that adherence is built on an interchange between patients and
providers and reflects the relationship between self-management behaviors and medical
advice. The authors recommend adherence frequency scores (number of treatments
performed/number of treatments prescribed
Impact on research and practice
Although progress has been made on each of the three 2003 SM research priorities, there is much more to be learned. The Spina Bifida Association work group on Self-Management Guidelines has identified research needed to better understand process and outcomes in SM such as: (Melissa Bellin, personnel communication, June 2017):
What are the foundational skills and abilities that need to be
developed in toddlers, pre-school agers, and school agers that facilitate the
development of SM behaviors in adolescents and young adults? What interventions optimize the development of these foundational
skills and abilities early in childhood? What interventions are effective in closing the gap between
self-management behaviors in adolescents/young adults with SB and their typically
developing peers? What interventions, including technology interventions, need to be
targeted to mid and older adolescents and their parents and adults to improve their
self-management outcomes? Does routine clinical assessment of self-manage- ment behaviors with
the development of action plans with the adolescent and adult (and their family, if
available) yield improved outcomes?
More broadly, NIH has targeted advancing the science of self-management by funding centers of excellence (P30s) and exploratory centers (P20s) in Self-Management. These Centers offer opportunities for theory-based interdisciplinary research teams to create innovations in self-management and impact health care. These centers address issues such as self-management of chronic conditions generally (e.g., Center for Complexity and Self-Management of Chronic Disease, University of Michigan, The Self-Management Science Center at The University of Wisconsin-Milwaukee); the brain behavior connections in self-management (SMART Center at Case Western University); fatigue and sleep in chronic illness (Center for Sleep-Related Symptom Science at John Hopkins or the Yale Center for Sleep Disturbance in Acute and Chronic Conditions), and pain (Center for the Genomics of Pain at the University of Maryland [10]. These centers and others offer the opportunity for interdisciplinary research collaboration to advance important issues in self-management for individuals with SB and their families.
Although the evidence for advancing self-manage- ment in clinical care of individuals with SB and their families is in its infancy, activities to advance self-management have emerged using an understanding of the important concepts from the literature. There is some evidence that individual factors such as executive function [17] chores and decision-making are related to self-management outcomes [18, 19]. Children with SB who have problems with executive functioning and working memory or those with fewer household responsibilities may delay initiation or take longer to achieve self-management behaviors [17]. It appears that results vary by health behavior. For example carrying out diet recommendations and skin care regimes have been difficult for children and parents [20]. Camp based interventions have shown promise in enhancing process skills (e.g., goal setting) and select self-management behaviors [21]. Pilot data from a family intervention focusing on problem-solving in families with school age and adolescent children increased skills [22]. A weekend workshop format did not impact outcomes [23]. However, there is strong evidence across ages and conditions that knowledge is not enough to explain behavior but that self-efficacy is consistently related to behavior change [24, 25]. Clinicians can use the evidence generated to date to assess developmental skills and abilities foundational to developing self-efficacy (e.g., ability to make choices from limited options for toddlers, participation in chores for preschoolers, and beginning to develop skills [e.g., participate in CIC] for schoolagers. Use of self-management and other conceptual frameworks (e.g. Stages of Change) [26] have also led to the development of a number instruments measuring self-management and related concepts. Team members can assess self-management skills, abilities, readiness or behaviors in older children, adolescents and adults with reliable and valid spina-bifida specific instruments such KKIS-SB [27], AMIS II [28, 29], and generic instruments such as the TRAQ [30]. If deficits are found developing action plans with time-defined outcomes and re-evaluation criteria is critical.
It is also important to realize when individual or family self-management is not appropriate. In rare instances, individuals and families do not have the resources or abilities to self-manage. If the individual or family is not capable of safely self-managing a chronic health condition (e.g. suicide ideation, child neglect or elder abuse), professionals have the responsibility to intervene. At this point self-management ceases and professionals initiate safety net activities to protect vulnerable populations such as children with a chronic condition, those with intellectual disabilities, or those with physical disabilities.
Theoretical frameworks or theories can facilitate agencies, programs or individual clinicians approach to organize care and enhance self-management. Leveraging electronic health record documentation and best practices can be used to develop quality improvement initiatives that address self-management. Key to clinician or program initiatives is systematically re-assessing self-management abilities, skills, readiness or behaviors. The ability to bill insurances for use of reliable and valid assessment measures should increase reimbursement and somewhat compensate for the time needed for this activity [30].
Clinical resources
Chronic Disease Self-Management Program (Patient Education Department, Stanford School of Medicine).
Center for Adherence and Self-Management (Cin- cinnati Children’s Hospital).
Footnotes
Acknowledgments
The author would like to acknowledge Polly Ryan, PhD, RN, FAAN for her instrumental contributions to the development of theoretical approaches to self-management.
Conflict of interest
The author has no conflict of interest to report.