Definitions,frameworks,and theoretical issues in self-management 1

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.

1. 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.

Table 1

Frameworks and theoretical approaches to self-management

	Definitions Focus	Components	Outcomes	Comments
Lorig and Holman  Self-Management Education.	Process/Individual	Self-tailoring Self efficacy Action plans, Reinterpreting, Social behaviors	$+$ SM Behavior $+$ Health status $+$ Healthcare utilization	SM-person responsible for day-day management
Grey et al.  A revised self- and family-management framework (revision of 2006)	Process/Individual	Facilitators and barriers, Illness needs, Activating resources, living with the condition	Proximal: Behaviors, Cognition, Biomarkers, Symptom management Distal: Health status, Family outcomes, $+$ healthcare	SM in the context of family management of the conditions
Knafl and Dietrick  Family Management Style		Sociocultural context Perceived influences on Management Major 1) Definition of the situation 2) Management Behaviors 3) Perceived Consequences Family Members: Child, mother, father, sibling
Ryan and Sawin . Individual and Family Self-Management Theory (IFSMT)	Process/outcome Individual family	Context: Condition, Individual/ Family, Social Process: Knowledge, Beliefs, Self-Regulation Skills, Social Facilitation	Proximal: SM Behaviors, Cost of HC Distal: Health status, QOL/Well Being, Cost of Health	SM involves the use of specific processes, can be affected by specific interventions, and results in specific outcomes
Modi et al. . Pediatric Self-Management: A Framework for Research, Practice, and Policy (PSMF)	Processes/Health processes/ (focus areas called domains in this Framework) Individual, family, community and health care system	Modifiable and nonmodifiable domain-specific influences impact outcomes through underlying cognitive emotional and social processes. SM behaviors (a process) affect adherence and ultimately outcomes	Individual and System Outcomes	Although differentiates SM and adherence, adherence is a key concept in SM framework

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).

Table 2

Definitions and assumptions of two exemplar theoretical approaches to self-management

	Definitions	Select assumptions
Individual and Family Self-Management Theory (IFSMT) ${}^{\text{a}}$	Self-management is a process by which individuals and families use knowledge and beliefs, self-regulation skills and abilities, and social facilitation to achieve health-related outcomes. Self-management takes place in the context of risk and protective factors specific to the condition, physical and social environment, and individual and family. Proximal outcomes are self-management behaviors and cost of health care services; distal outcomes are health status, quality of life and cost of health. Self-management is applicable to chronic conditions as well as health promotion	Persons engage in behaviors for personally meaningful reasons that may or may not be directly related to optimizing their health status. Individual interest and control results in better outcomes than external directions. SM involves dynamic iterative processes requiring time, repetition, and reflection. Most people can implement self-management behaviors. Many factors influence behavior; including, personal preferences, culture, social norms, and family rules and boundaries. Numerous contextual factors affect an individual’s and family’s ability and desire to engage in SM. Individual and family perceptions of resources affect engagement in SM behaviors. Person/family-centered interventions are most effective in fostering engagement in SM behaviors and achievement of proximal and distal outcomes. Individuals actively engage in self-managing conditions by collaborating with persons in the health care system in order to achieve personal health goals. However, as health care professionals we acknowledge that we are not in control of someone else’s behavior. The concepts adherence, alliance, and compliance are perceived contrary to SM as they dismisses the notion that the primary responsibility and control lie with the individual or family.
Pediatric Self-Management: Framework for Research, Practice, and Policy (PSMF) ${}^{\text{b}}$	Self-management is the interaction of health behaviors and related processes that patients and families engage in to care for a chronic condition Adherence is the extent to which an individual’s (or family’s) self-management behaviors coincides with medical or health advice. The authors encouraged Investigators to use terms such as “poor” or “perfect”: adherence as well as “nonadherence” and suggest that investigators state their criteria for each of these categories using their operational definition of adherence (number of treatments performed divided by number of treatment prescribed $\times$ 100)	Efforts to manage one’s condition can either positively or negatively affect health outcomes. Individual, family community and health care systems, the frameworks 4 main concepts, influence self-management behaviors through cognitive, emotional and social processes. Self-management behaviors have their impact on health outcomes through adherence. Each of the 4 main concepts have modifiable and unmodifiable influences on self-management behaviors. The framework focuses on treatment and does not apply to general health promotion in the absence of a chronic medical condition in healthy individuals.

${}^{\text{a}}$ NOTE: the material in this table was adapted from IFSMT Individual and Family Self-Management Theory (FSMT) [12, 13] and ${}^{\text{b}}$ Pediatric Self-Management: A Framework for Research, Practice, and Policy (PSMF) [11].

Table 3

Core domains, proximal and distal outcomes for two exemplar theoretical approaches to self-management

Individual and family self-management theory ${}^{\text{a}}$
Major domain: context factors	Major domain process factors	Mediators or proximal outcomes	Distal outcomes
Condition-Specific Factors Individual/Family perception of Complexity of condition & treatment Trajectory Condition stability & transitions Physical & SocialEnvironment Health care access Transportation Culture Social capital Individual & Family Factors Developmental stages Learning ability Literacy Family structure & functioning Capacity to self-manage	Knowledge & Beliefs Factual information Self-efficacy Outcome expectancy Goal congruence Self-Regulation Skills &Abilities Goal Setting, self-monitoring & reflective thinking Decision making, planning & action Self-evaluation Emotional control Social Facilitation Social influence Support (emotional, instrumental or informational) Negotiated collaboration	Individual/FamilySelf-Management BehaviorsManaging the Condition(s) Engagement in activities/ treatment regimens Use of recommended pharmacological therapies Symptom management Managing important life rolesCost of Health Care Services	Health Status Prevention, attenuation, stabilization, worsening of the condition Quality of Life Perceived well-being Cost of Health Direct & indirect cost

Pediatric self-management: a framework for research, practice, and policy ${}^{\text{b}}$
Major domains	Adherence	Health outcomes
Three interdependent domains Self-Management behaviors (at the center of the circle) Processes (the circle that surrounds self-management behaviors) includes process in each of the 4 domains: Individual (e.g., communication with HC team) ; family (e.g. management of stress physical and psychological functioning within the family) community (e.g., providing peer social support for treatment regimens, school reintegration) and HC system (e.g. shared decision making) “Influences”. Nonmodifiable and modifiable contextual variables across 4 domains, individual, family, community and health care system ) (4 pieces of the pie in the circle). These are influences that promote or detract from performing health behaviors. The 2 outer rings of the circle are the types of influences in each of the four domains (modifiable and non-modifiable) The framework proposes that, there are modifiable and nonmodifiable influences in each of the 4 domains: Individual (e.g disease knowledge, coping vs. age gender, developmental level) Family (e.g. family functioning, parental involvement vs. marital status, family structure, income, education, SES), Community (e.g. peer support or social stigma vs. neighborhood, health and wellness resources in school) and Health care system (e.g. pt/provider communication, medical training models vs. access, health insurance) These influences impact how other influences and process interact. For example, child development (not just child age) impacts how other influences and processes interact	Treatments: Medications (e.g. oral, inhaled, nebulized, intravenous, injections) Airway clearance Physical therapy Vitamin/mineral supplements Supplemental feeds (e.g. Elemental, TPN) Lifestyle modifications: Exercise Diet Fluid Sleep Clinic appointmentattendance0Symptoms monitoring (e.g. blood glucose monitoring, peak flow meters)	Individual: Symptoms and symptom control Complications Quality of life School/work days Drug resistance Mortality Health care utilization (e.g. emergency room visits, hospitalizations) 000000000000000000000000000Systems Clinical decision making Financial costs (e.g. insurance rates, usage) Treatment efficacy Health care delivery

Note: the information in this table was adapted from Individual and Family Self-Management Theory (IFSMT) [12, 13] and ${}^{\text{b}}$ Pediatric Self-Management: A Framework for Research, Practice, and Policy (PSMF) [11].

1.1 Self-management definitions, frameworks, and theoretical issues

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 $\times$ 100) be used in clinical use and research. In this framework, adherence mediates the impact of self-management behaviors on outcomes. In contrast, the IFSMT had three explicit assumptions in this area that underpinned the theory. First individual interest and control results in better outcomes than external directions. Second an acknowledgment that as a health care professional we are not in control of someone else’s behavior. These underpin the final assumption that the concepts of adherence and compliance are perceived contrary to self-management as they dismiss the notion that the primary responsibility and control lie with the individual and the family. It could be that the difference in the role of adherence in these theoretical approaches is explained by the PSMF’s focus on children and their families rather than adults. However, some pediatric health care professionals have suggested that the incremental assumption of control or responsibility for behavior is key to the development of the child, adolescent and young adult. Secondly, even though the components of the frameworks are similar, they are organized differently. For example, the same concept (family) is one of the four key domains in the PSMF with modifiable and nonmodifiable influences on self-management behaviors. In the IFSMT family influences on self-management behaviors are seen in the context (risk or protective factor), and the process (interaction with the person with the condition). Further, the PSMF addresses individual and system outcomes while the IFSMT addresses individual and family health, cost and quality of life outcomes. In the PSMF adherence mediates the impact of process on health and system outcomes. In contract, In the IFSMT self-management behaviors mediate the impact of process on individual and family health outcomes. Finally, the authors of the IFSMT indicate that interventions can target either context or process factors or both while in the PSMF the preferred target of intervention are the processes. The key similarities in these theoretical approaches are that in both individual and family influences on self-management behaviors are critical to health outcomes. Clinicians and researchers may find the organization and relationships of variables of one theoretical approach better matches their practice or research question. For example, if investigators are trying to understand specific process mechanisms on self-management behaviors both frameworks could be useful. If specific skills and abilities are targets of the intervention (e.g., self-efficacy, goal setting, goal congruence, self-monitoring) the IFSMT may provide a useful scaffold while investigators considering interventions aimed at key condition-specific processes such as communication with the medical team, allocation of treatment responsibility, school reintegration or shared decision making might find the PSMF a better fit. If Investigators are studying health promotion self-management, they would want to base their investigation on the IFSMT as the PSMF does not apply to health promotion. In contrast, if investigators wish to explore multiple systems in which a child lives, the PSMF may be more useful. Finally, those who want to understand adherence better should use the PSMF and a measure of adherence (percent of time the individual or family actually performs the behaviors prescribed by the health care provider).

2. 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].

3. Clinical resources

Chronic Disease Self-Management Program (Patient Education Department, Stanford School of Medicine).

http://patienteducation.stanford.edu/programs/cdsmp.html.

Center for Adherence and Self-Management (Cin- cinnati Children’s Hospital).

https://www.cincinnatichildrens.org/research/divisions/c/adherence.