Motivation and emotion/Book/2016/Self-management and chronic illness

Self-management and chronic illness:
How can we help motivate patients to engage in self-management activities?

Overview

Terms and Definitions

During this book chapter the following terms and definitions are used:

Self management (also known as self-care): Describes the day-to-day activities that patients must undertake to manage all that a chronic illness entails to keep the illness under control and minimise impact on health and functioning.
Chronic illness (also known as a chronic condition): Refers to illness and health conditions that persist over time causing a wide range of issues that the patient will need to manage.
Motivation: Refers to a theoretical construct used to describe the behaviour of humans, as it underlies actions, needs and desires.
Self-efficacy: Refers to the extent to which one believes in their own ability across a variety of circumstances.
Health coaching: Described as an interaction between a person with a chronic illness and a peer or professional, intended to provide support for active self-management (Lawn & Schoo, 2009).
Patient Care Team: Diverse group of clinicians involved in the care of a defined group of patients who communicate about and participate in that care (Wagner, 2001).

Chronic illness and self-management

Chronic illnesses make up some of the most prevalent and costly health problems experienced globally, significantly contributing to the global disease burden (Green et al., 2012). This is likely due to a worldwide increase in life expectancy colliding with the rate of cultural and environmental risks such as tobacco consumption, sedentary lifestyles, poor nutrition and air pollution (Coleman & Newton, 2005; Newman, Steed & Mulligan, 2004; Lawn & Schoo, 2009).

According to Gallant (2003), most prevalent chronic illnesses require a significant amount of self-management, including:

Medication taking
Physical activity
Dietary and weight adjustment

Specific illness related behaviours (e.g., insulin injections and glucose monitoring for Type 1 Diabetics)[grammar?] There is a growing body of research evidence to suggest that effective patient self-management can improve patient outcomes (Coleman & Newton, 2005; Gallant, 2003; Jensen, 2003; Kralik, 2004). However, encouraging patients to engage in self-management can be challenging if the patient does not have the motivation to effectively manage their own condition as it requires a high level of control on the patient's part.

Social Cognitive Theory can be used to understand the relationship between motivation and self-management effectiveness as it suggests that personal factors and environmental factors interact with each other to influence an individual's behaviour (Gallant, 2003). As Bandura (2004) notes, 'health habits are not changed by act of will, they require motivational and self-regulatory skills'. Additionally, Jensen (2003) suggests that because chronically ill individuals usually are expected to change existing habits to self-manage their condition(s), which can be very challenging, self-management is unlikely to occur in the absence of motivation.

Self-management involves monitor one's illness and develop cognitive/behavioural and emotional strategies to maintain a desired quality of life (Schulman-Green, Jaser, Martin, Alonzo, Grey, & McCorkle, 2012). Although there is no one correct model or definition of self-management (Wright, Sheasby, Turner, & Hainsworth, 2002), it is clear that self-management behaviours are essential to successful treatment of chronic illness. Consistently adhering to a self-management plan is associated with reduced mortality, less risk of disability, increased quality of life and reduced medical costs (Jerant, Friedrichs-Fitzwater, & Moore, 2005) regardless of the specific program. Optimising health behaviours and general lifestyle is supported by a significant amount of evidence suggesting that it can aid in preventing and self-managing chronic illness (Linden, Butterworth, & Prochaska, 2009).

Although preventable disease and ageing are responsible for the majority of chronic illness burden, disease burden has risen across nearly every age group (Jerant, Friedrichs-Fitzwater, & Moore, 2005). The extent of impact that chronic illness has on individuals is often underestimated by their health care providers, whose insights into their patients lives is generally brief in nature (Price, 1996).

Case Study: Jess, 21 year old student

Jess is a 21 year old university student who lives with multiple chronic illnesses. She suffers from frequent fatigue, joint pain, anxiety and occasionally experiences depressive symptoms. To manage her condition, Jess goes on walks and used to go to the gym regularly. She has recently become too busy to attend the gym and has as a result experienced an increase in symptoms not experienced when attending the gym regularly. Sometimes she avoids making appointments such as doctor appointments due to self-reported anxiety and issues associated with waiting for long periods in a doctors waiting room.

Social cognitive theory

Social cognitive theory emphasises that an individual's personal and environmental factors interact to influence and motivate the individuals' behaviour (Gallant, 2003). This theory has been instrumental in the development of self-management skills and interventions and places particular emphasis on the role of personal factors such as efficacy beliefs and environmental factors [for example?] and the way they interact with behaviour (Gallant, Spitze, & Prohaska, 2007). Albert Bandura (2004) posited that the following are core determinants of effective self-management behaviours under a social cognitive framework:

Core determinants of effective self-management behaviours

Albert Bandura (2004):

Knowledge of the risks and benefits of health choices made over the lifespan
Perceived self-efficacy, meaning the belief that one can partially control the health choices one makes
Outcome expectations about expected costs and benefits of the health choices one makes
Health goals, set by people (for themselves) as well as their set out plans for reaching the goals
Perceived facilitators and barriers to effective self-management

Albert Bandura's self-management model

Figure 1. Albert Bandura

Albert Bandura's (2004) self-management model suggests that individuals must acquire skills such as self-monitoring of health behaviour, analysing the contexts in which behaviours occur and how to utilise proximal goals in order to achieve self-motivation which will in turn help to guide behaviour. He also noted that, in order to effectively self-manage chronic illnesses, it is necessary to recruit family and friends for social support.

Haskell and associates (1994), as cited in Bandura (2004), utilised the self-management model for the purpose of promoting lifestyle changes in patients who have been diagnosed with Coronary Artery Disease to reduce their heightened risk of experiencing a heart attack. Results supported the efficacy of the self-management model, in that at the end of the study those who did not receive [what?] assistance according to the self-management model showed no signs of improving or worsening in their condition. In contrast, participants of the study who were provided with assistance in self-management according to the model attained significant decrements in a variety of risk factors (as follows):

Lowered intake of saturated fat
Lost weight
Lowered bad cholesterol, raised good cholesterol
Exercised more
Increased Cardiovascular capacity

Self-efficacy theory

elf-efficacy theory is based on the underlying assumption that psychological processes serve the function of instigating and strengthening an individuals personal efficacy beliefs and expectations (Bandura, 1977). As personal efficacy beliefs can influence behaviour, there are important clinical implications for self-management and behavioural change through motivational means. Individuals often avoid threatening situations when their personal efficacy beliefs lead them to doubt their own coping skills and competence. { {Robelbox|theme=3|title=Case Study Example}}

When Jess was going to the gym she was experiencing reduced symptoms and increased energy as well as motivation to conduct other self-management activities effectively, such as healthy eating and attending medical appointments. After interviewing[explain?] Jess, it was discovered that she has poor self-efficacy beliefs in relation to scheduling and managing a 'busy day' causing her to avoid making appointments and even occasionally cancel social engagements if she had 'too many' other tasks to complete that day.

|}

Self-determination theory

Self-determination theory focuses on the satisfaction of three psychological needs; competence, relatedness and autonomy (Ng, et al., 2012). Self-management requires a high degree of individual autonomy and competence in order to manage the complex nature of chronic illness and is most likely to be successful when supported through positive relatedness with others.

Self-determination theory suggests that when health care providers support individual autonomy, patients become more autonomous and more competent (Williams, McGregor, Zeldman, Freedman, & Deci, 2004). This has important implications for individuals with chronic illnesses such as diabetes or weight control issues as there is research evidence across 184 self-determination studies that indicates that autonomy support was associated with greater needs satisfaction (Ng, et al., 2012) improved outcomes and that the influence of motivational factors on improved outcomes is usually through self-management processes (Williams, McGregor, Zeldman, Freedman, & Deci, 2004).

Case Study Example

From a self-determination perspective, Jess is having increased symptoms and issues with self-managing her chronic illnesses because of a perceived lack of autonomy and a perceived lack of competence. She feels she cannot manage her busy schedule, suggesting that she is not feeling autonomous nor competent may explain the decrement in outcomes that she has been experiencing. If Jess's healthcare providers, such as her doctor, psychologist or physiotherapist, were to assist her in increasing her perceptions of autonomy and competence it may assist her in her self-management because perceptions of being able to make important changes in self-management behaviour are essential in making the change.

Self-management programs

[Provide more detail]

Chronic disease self-management program

The Chronic Disease Self-management Program (CDSMP) is a community-based, peer-led program (Jerant, Friedrichs-Fitzwater, & Moore, 2005) conducted over 7 weekly sessions of 2 and a half hours duration. The program is based on social cognitive theory and self-efficacy theory and includes modelling of desired behaviours and social strategies (Lorig et al., 2001). It addresses five core self-management skills as proposed by Lorig and Holman (2003); problem solving, decision making, resource utilisation, formation of a patient/health care provider partnership and taking action. The assumption that all people who experience chronic illness have similar preoccupations and have the ability to be instrumental in the management in many facets of their own health (Hudon, Chouinard, Diadiou, Bouliane, Lambert & Hudon, 2016)[grammar?].

CDSMP sessions are designed to be generic, which thus extends applicability to any chronic illness. In one application of the CDSMP, despite expected increased disability, participants in this program had pain levels remaining below the baseline, increased self-efficacy and fewer utilisations of outpatient services (Lorig et al., 2001) demonstrating that it is an effective method of improving self-management outcomes for participants. Support for the effectiveness of this program has also been provided by Lawn and Schoo (2009) who found that group programs which provided information and support were among the most effective approaches to self-management.

Although this program shows the potential for generalisation to many other conditions, due to its social nature is not best suited to everyone. Common reasons for not engaging with the program included the group format and not wanting to talk about oneself in front of others[factual?]. Additionally, poor health and lack of access to transport and scheduling issues were also reported to be reasons for not engaging or dropping out of the CDSMP[factual?]. However, people who did complete the program reported an overall positive impact on their own self-management abilities and motivation (Hudon, Chouinard, Diadiou, Bouliane, Lambert & Hudon, 2016).

Figure 2. Requirements for effective motivational interviewing

Health coaching

[Provide more detail]

Motivational interviewing

Motivational interviewing (MI) is a counselling technique designed to enhance intrinsic motivation in order to direct and energise health behaviours and change undesirable behaviours that are counterproductive to effective self-management (Lawn & Schoo, 2009). It is a method that health care professionals can use in assisting their patients in the process of changing health and self-management behaviours (Konkle, 2001).

In regards to health coaching, MI is the only health coaching technique that has been extensively and consistently associated with improved self-management outcomes and has been utilised effectively across genders, generations, cultures etc...[missing something?] (Linden, Butterworth, & Prochaska, 2009). Motivational interviewing has the potential to serve as an effective yet brief intervention that has been shown to be more effective than advice or skills training alone (Konkle, 2001). Factors required to effectively implement MI are visually represented in Figure 2.

During Motivational Interviewing, individuals further clarify their perceptions of their circumstances which allows them to better select strategies to enhance their future health and self-management efficacy (Price, 1996).

The following as suggested by Lawn and Schoo (2009), are the principles of motivational interviewing:

Expressing empathy
Developing discrepancy
Avoiding argumentation
Rolling with resistance
Supporting self efficacy

Figure 3. Stages involved in the process of behaviour change.

The Transtheoretical Model of Change (TTM) can be used to understand the process through which patients progress when undergoing an motivational interviewing intervention to modify health and self-management behaviours. The TTM was originally developed to garner an understanding of how individuals change the behaviour purposefully, in conjunction with their readiness to change (Konkle, 2001). As people with chronic illnesses can become perceptive to pervasive learned helplessness (Price, 1996), it is important to understand what they are going through during the MI program. This model can be viewed in terms of five separate stages; pre contemplation, contemplation, preparation, action, maintenance, as explained in Table 1 and visually represented in Figure 3.

Table 1. Stages of change within the Transtheoretical Model of Change

Stage	Description
Precontemplation	The earliest stage when an individual is unaware, unwilling or discouraged regarding the need to change a problem behaviour
Contemplation	Some active consideration about the need to change behaviour
Preparation	Intention to change in the near future
Action	Implies overt and current modification of behaviour
Maintenance	The stage where behaviour needs to be maintained. According to Konkle (2001), this maintenance requires continued energy until such a time when the behaviour change is no longer perceived as a concern to the patient by both patient and health care professional.

Barriers to self-management

In studies by Jerant, Friedrichs-Fitzwater & Moore (2005) and Bayliss, Steiner, Fernald, Crane & Main (2013) , it was discovered that the following obstacles, as summarised in Tables 2 and 3, can stand in the way of effective self-management behaviours an. If these barriers to effective self-management are addressed, better outcomes will be reached for those individuals living with chronic illness.

Other factors such as domestic violence, literacy issues and poverty also contribute to preventing an individual from properly self-managing their condition (Lawn & Schoo, 2009). According to Jerant, Friedrichs-Fitzwater & Moore, 2005) most of the issues listed below could be solved through the offering of in-home delivery of assistive services.

Table 2. Barriers to active self-management

Barrier	Description
Depression	Depression left many participants feeling isolated, unable to engage in social activities and generally "getting on with life". Very few of those who participated indicated that they had sought professional support for their depression.
Problems controlling weight	Most participant in this study indicated that they struggle with weight control and other diet related issues. Weight loss efforts were made more difficult by the fact that meals and food were viewed as the centrepiece of family gatherings.
Difficultly exercising regularly	Most participants within the study indicated that they were aware of the important role exercise plays in coping with their chronic illness, but they also indicated that they felt they could not participate in regular exercise
Fatigue	This was an issue that hindered even the most simply day-to-day tasks that participants needed to complete for hygiene and survival. Also not surprisingly, many subjects indicated that they often re-arrange their person schedules to allow for extensive rest periods following activities such as chores
Poor communication with physicians	Quite a few participants indicated that they often feel rushed when consulting with medical professionals, especially general practitioners. As a result of feeling rushed, some of these participants also mentioned that they felt they didn't understand their chronic illness nor how it was caused.
Lack of support from family	Due to the nature of some participant's families, they felt that they were not adequately supported. They indicated that because they were not visibly 'sick' that family members didn't believe them.
Pain	Social time was often given up due to pain levels, as well as other desirable activities. This was often due to the difficulty accompanying sitting, standing, or walking for extended periods of time
Financial problems	Issues such as relocating house due to lack of accessibility can cause huge budget constraints for individuals with a chronic illness to manage. For example: "Need money to pay for medications" was recorded by a participant in a free-listing interview (Bayliss, Steiner, Fernald, Crane & Main, 2013).
Lack of knowledge about condition(s)	Participants noted that it was difficult to treat conditions that they were not aware of or were not aware there was treatment available. For example: "I didn't know you could treat diabetes" was recorded by a participant in a free-listing interview (Bayliss, Steiner, Fernald, Crane & Main, 2013).
Low sense of self-efficacy or sense of loss of control	Self-Efficacy or the extent to which patients believed they were competent enough to take care of themselves played a role in determining the effectiveness of their personal self-management strategies. For example: "I feel like I am falling apart. This has been a bad year", recorded in a free-listing interview (Bayliss, Steiner, Fernald, Crane & Main, 2013)

Table 3. Barriers to accessing self-management resources

Barrier	Description
Lack of awareness	When asked, very few participants in the study seemed to be aware of existing and available self-management resources. Additionally most of the participants suggested that they would like access to more self-management resources.
Physical symptoms	Limited mobility, fatigue and pain were commonly associated with limiting access to self-management programs and resources in participants accounts of barriers.
Transportation problems	There were a few participants who reported that they needed to drop out of the study due to problems with transportation.
Cost/health insurance	If extra fees not covered by insurance are required to paid for a self-management resource or support program, many participants would not participate as indicated due to likely lack of ability to pay.
Interest in home delivery of self-management services	A majority of individuals who participated in the study reported that they would be interested in receiving in home self-management related assistance. This is contrary to the most popular models of self-management, such as the CDSMP (Bandura, 2004)

Ethics and moral obligations

[Provide more detail]

Ethical issues related to self-management

Redman (2005) argues that doctors and the people that they treat need to interact collaboratively to ensure that patients have the autonomy and competency to effective conduct self-management behaviours to improve chronic illness outcomes. Redman (2005) also notes that although some professionals put forward the point that this responsibility should be on the patient, this is countered by presenting the point that rejecting a collaborative relationship between patient and practitioner unreasonably forces responsibility on the patient. Finally it is noted that constructing an ethical structure and goal setting for collaborative patient/provider relationship is essential to effective self-management and improved chronic illness outcomes.

In order to properly prepare individuals for self-management they need to be provided with the correct information and support they need to do so, absence of this support is unethical and does not align with healthcare providers obligations of fidelity and compassion (Redman, 2005).

Case Study Example

Jess sees a counsellor, however this has become much less frequent as of late due to low efficacy beliefs in relation to scheduling her busy days. Instead of berating her for not making subsequent appointments or occasionally missing appointments, Jess's counsellor decides to come up with a solution until efficacy beliefs are improved. Jess's counsellor has decided that at the end of each session they will have a talk about what she has on next week in terms of personal schedule and work together to draw up a timetable that factors in the next appointment. Instead of giving up when patients show resistance to change, the ethical approach is to try alternative methods until a fit is found for the respective individual and their complex chronic illness needs.

Moral obligations related to self-management

As self-management requires a wide range of activities that must be conducted throughout everyday life (Gallant, 2003), they can be very disruptive to the patients[grammar?] life and stop them from doing other everyday activities they feel need to be completed in order to retain their 'former self'.

A study by Townsend, Wyke & Hunt (2006) revealed that patients felt morally obligated to manage all of their life responsibilities as well as the activities involved in self-management. This was of concern to the authors as this moral obligation to responsibilities such as chores and social roles, often came in higher priority than important self-management activities such as medication adherence and physical activity.

Case Study Example

When Jess's illness has a flare up (increase in symptoms and severity of existing symptoms) she requires rest and reduced activity and occasional experiences reduced mobility and extreme fatigue. As she is a university student, her schedule is very full during the semester and requires attention, presence and use of learning skills. This has led her to occasionally attend university even when she requires rest or is experiencing reduced mobility and fatigue because of the moral obligation to maintain a 'normal' day to day life being stronger than the obligation to conduct self-management activities

Role of patient care teams

Wagner (2001) suggested that successful chronic illness management and relevant interventions generally involve a coordinated multidisciplinary team of individuals in the medical field. The participation and effective communication of these patient care teams is seen as essential to successful chronic illness self-management and improvement of outcomes. There is research evidence to suggest that people who experience chronic illness benefit from a patient care team consisting of both skilled clinicians and educators, all who need to understand public health principles and approaches. However, if the patient care team does not communicate and participate in patient care effectively it can have a negative effect on patients self-management capabilities and related health outcomes.

Conclusion

For those who experience chronic illness it is pervasive across many facets of their lives and thus it is important to self-manage symptoms and other associated health behaviours. Social cognitive theory, self-efficacy theory and self-determination theory can be used to understand the influence motivational factors have on patients[grammar?] self-management behaviours and relevant personal efficacy beliefs. Ultimately, the motivation to engage in self-management activities can be understood in terms of personal and environmental factors present in the individuals[grammar?] everyday life. However, it is important to ensure that this motivation narrative must be told from the patient's perspective. Barriers to effective self-management can be addressed through interventions such as the Chronic Disease Self Management Program and Motivational Interviewing which both involve exploring the patients experience of chronic illness and helping them to increase their autonomy and self-efficacy.

Health care providers have an ethical obligation to provide comprehensive information regarding self-management of chronic illness as it has been shown to improve health outcomes and reduces the costs associated with management of chronic illness. The way that health care providers act individually or within a patient care team is important as it can have either positive or adverse effects on a patients ability to manage their own illness. Communication and active participation on the part of all individuals involved in a chronically ill patients day to day life is evidently the most important part of ensuring sufficient motivation for effective self-management.