2 Diabetes Institute, University of Pittsburgh, Pittsburgh, PA, USA
3 Medical Center, University of Pittsburgh, Pittsburgh, PA, USA
4 Indiana Regional Medical Center, Indiana, PA, USA
In all people I see myself—none more, and not one a barleycorn less;
And the good or bad I say of myself, I say of them …
Walt Whitman (1891)
Introduction
Diabetes is a serious disease that requires a person to make daily decisions about their self-care and that includes behaviours such as nutrition, exercise, risk reduction, coping, monitoring, problem-solving and medication adherence. A body of evidence demonstrates that interventions that foster diabetes self-management improve health status and lower healthcare costs (Brown et al. 1999).
Diabetes self-management education (DSME) is critical in laying the foundation for promoting the knowledge and skills for patients to perform self-care tasks. DSME improves outcomes (Brown et al. 1999; Norris et al. 2002) and the effectiveness of DSME is directly associated with the amount of time spent with the diabetes educator. Although improvements in HbA1c values are observed following DSME, benefits tend to decrease 1–3 months later (Norris et al. 2002). This suggests that DSME alone may not be sufficient to maintain improved behaviours over a lifetime and sustained improvement requires time, contact and follow-up.
DSME is now more patient-centred and theoretically based; therefore programmes are now putting greater emphasis on providing ongoing support to sustain DSME gains (Siminerio et al. 2006a; Funnell 2010) and attempting to incorporate self-management support (SMS) into their structure (Glasgow 1995; Wagner 2000; Anderson 2005). Despite efforts and evidence that DSME is important and attempts for sustained follow-up are being made, the numbers of DSME programmes and educators to provide these services are shrinking while the rates of diabetes are increasing (Anderson 1994; Conrood et al. 1994; Hiss et al. 1994; Mensing et al. 2006). Thus, opportunities for comprehensive services that increase access and include SMS are critical.
There is a growing body of literature that provides evidence for the utilisation of peer leaders as part of the diabetes care delivery system (Heisler et al. 2005; Tang et al. 2005). Peer leaders are used effectively to assist in self-management, provide social and emotional support and cultural mediation, link people to the health system, and provide ongoing support to help people management their disease (Lorig et al. 1999; Tang et al. 2005). The use of peer leaders provides a potentially low-cost, flexible means to supplement health care. If carefully designed and implemented, peer leader initiatives can be a powerful way to help patients with diabetes live more successfully.
In the face of growing numbers of people with diabetes and significant resource constraints facing health systems worldwide, it is increasingly important to develop and evaluate low-cost initiatives that build on available resources. Peer leaders provide a unique opportunity to serve as a resource for ongoing community-based self-management support initiatives; however, many questions regarding their role in a model of diabetes care delivery remain unanswered. These include questions surrounding the advantages and disadvantages of using peer leaders in ongoing diabetes delivery systems and the need to support and nurture the peer leader. Moreover, it is critical to explore the role of empathy and its influences on clinical and behaviour change, and whether diabetes educators who have diabetes themselves should indeed be considered peer leaders.
The use of peer leaders in diabetes self-management
As health systems around the world strive to transition from systems that focus on acute care management to chronic illness prevention and health promotion, a subset of individuals (peer leaders) are emerging as a potential solution to help to improve diabetes care and quality of life. Merriam-Webster defines the term ‘peer’ as ‘one that is of equal standing with another; especially: one belonging to the same societal group especially based on age, grade, or status’. Tangential to the term ‘peer’, the term ‘support’ is defined by Merriam-Webster as ‘one that supports—often used attributively’.
Therefore, peer support may be defined as the giving of support or assistance by one who is considered equal. More formally, Dennis (2002) developed a comprehensive definition of peer support in the healthcare context. According to this definition, peer support is ‘… the provision of emotional, appraisal and informational assistance by a created social network member who possesses experiential knowledge of a specific behavior or stressor and similar characteristics as the target population’.
Peer leaders, sometimes referred to as community health workers, lay health coaches, promatores de salud, etc., are individuals who share common characteristics with a ‘targeted’ group or individual, allowing them to relate to and empathise with that individual on a level that a non-peer would not be able to (Doull et al. 2007). Common characteristics of peer leaders include age, gender, disease status, socioeconomic status, religion, ethnicity, place of residence, and culture or education.
Peer leaders often demonstrate that they carry wisdom and experience about their chronic diseases, including diabetes that far exceeds their physicians and other healthcare providers too (Doull et al. 2007). They are oftentimes patients who are able to successfully deal with the problems posed by their diabetes and who maintain a positive lifestyle. Peer leaders often share common traits such as the ability to develop relationships, sufficient time availability, along with being empathetic and motivated (Boothroyd and Fisher 2010 a,b). These individuals may live longer, are healthier and are a great resource and source of support to other individuals with diabetes (Donaldson 2003).
Due to limited financial resources in healthcare systems and the worldwide pandemic of diabetes, peer support is becoming an increasingly important strategy to provide low-cost scalable interventions aimed at promoting self-management support to improve diabetes care and outcomes. With estimates of 300–350 million people with diabetes, worldwide, by 2025 (Clark 2010), it is no longer feasible to continue to increase the number physicians, nurses, dietitians and healthcare facilities to attempt to curtail the rising incidence and prevalence of the disease. As such, the World Health Organization (WHO) acknowledged social support as a critical component of health promotion and recently, 2008, formed a consultation on peer support programmes in diabetes. The WHO (2007) now recognises peer support as an effective approach to diabetes management.
Individuals with diabetes manage nearly 99% of their disease on their own (Anderson et al.1994; Funnell and Anderson 2003; Funnell 2010), with the patients and their families baring the responsibility for daily self-management. A number of behaviours that patients need to successfully execute, on a daily basis, in order to successfully self-manage their diabetes—taking prescribed medications, following diet and exercise regimens, self-monitoring blood glucose and coping emotionally with the challenges of having diabetes. Many patients with diabetes have a difficult time carrying out these behaviours, and moreover, they may lack adequate support from family and friends to help them with their diabetes self-management (Piatt et al. 2006; Heisler 2010).
Evidence demonstrates that diabetes education and self-management (DSME) have a positive impact on patients’ clinical, behavioural and psychosocial outcomes (Siminerio et al. 2005; Siminerio 2006 a,b; Piatt et al. 2006) and that DSME is a cost-effective adjunct to medical care (American Association of Diabetes Educators (AADE) 2010). However, with the pandemic of diabetes and the ever-growing incidence of the disease, it is increasingly more difficult for diabetes educators to meet the high demand. Additionally, attending DSME is often times not ‘enough’ for positive behaviour change to be sustained (Funnell 2010).
Often, there are a number of barriers that patients face to attending traditional face-to-face group or individual DSME sessions. Most notably, DSME sessions are time-limited, often leading to increase lack of attendance and long-term support (Heisler 2007, 2010; Heisler et al. 2010). Thus, the integration of peer leaders into the diabetes self-management network can effectively reach more people with diabetes and provide ongoing self-management support. Additionally, evidence suggests that higher levels of social support, which are illness or regimen-specific, are associated with improved diabetes self-management (Glasgow and Toobert 1988; Ruggiero et al. 1990; Tillotson and Smith 1996).
Several studies have demonstrated that peer support contributes to improvements in medication adherence, diet, exercise and blood glucose monitoring (Wilson et al. 1986; Joseph et al. 2001; Samuel-Hodge et al. 2000; Peers for Progress 2010). If integrated with appropriate planning, oversight and training, the use of peer leaders may lead to sustained behaviour change and a sustainable model of DSME.
The most effective peer support models appear to combine peer support with a structured programme of DSME (Heisler 2010; Heisler et al. 2010) and are delivered through multiple modes of interaction, including modes such as individual and group sessions, self-help/support groups and Internet groups. The programmes are often implemented in diverse settings, such as the home, community organisation, school, or via telephone or internet and the role of the peer leader may take the form of an educator, coach or liaison (Dennis 2002). Although there are several modalities of how and where to implement peer support, actual provision of peer support comprises four main attributes that are applicable to all settings and modes of delivery.
There is no ‘one size fits all’ approach to implementing peer support because of the vast array of cultural and demographic differences of peer leaders; however, the following four functions, developed by the Peers for Progress (Boothroyd and Fisher 2010a; Peers for Progress 2010) initiative, offer a standardised structure in which peer support programmes may be built and evaluated. Within the scope of DSME, the four key functions of a peer leader are to
When a peer leader assists in self-management, they help patients to apply and incorporate the concepts of DSME into their daily lives (Fisher et al. 2005). This is achieved by using a number of educational and psychological tools including goal setting, skill building, practising and rehearsal of behaviours, trouble-shooting barriers and challenges, and problem solving. Peer leaders also often work on practising healthy eating habits and being physically active with the patients so that there is a reciprocal support mechanism.
A critical function of a peer leader is also to provide social and emotional support (Boothroyd and Fisher 2010 a,b). Strong evidence exists that there is a direct association between increased social support and improved health outcomes. In fact, social support is often considered a protective factor in health and may be as important as negative factors, e.g. obesity, smoking and hypertension (Boothroyd and Fisher 2010 a,b). When providing social and emotional support, peer leaders maintain frequent contact with patients, encourage patients to use their self-management skills and also how to effectively deal with diabetes and non-diabetes-related stress. Above all else, peer leaders are simply available to talk with people troubled by negative emotions.
This aspect is especially critical for patients who may lack an extensive social network (e.g. family and friends) to provide diabetes support or for patients with a social network that is not supportive of their self-management efforts. The elderly especially fall victim to not having a social network, and often as a consequence, they experience higher rates of depression than the general population (Malchodi et al. 2003; Heisler 2010).
The third key function of peer support is for the peer leader to act as a liaison or link to clinical care (Booothroyd and Fisher 2010 a,b). This function of peer support can be divided into two over-arching categories: (1) the linkages the peer leader develops and maintains in the primary care practice setting or other clinical care settings and (2) encouragement for patients to receive regular clinical care and form partnerships with their clinical care providers.
As the majority of diabetes care is delivered within the primary care practice setting, establishing relationships in this setting is critical. For example, the peer leader may often serve dual roles by reminding providers and office staff about the standard clinical care guidelines, and by also reminding patients of regularly scheduled appointments, encouraging timely provider visits and ensuring that patients are aware of the recommended testing that should be provided for people with diabetes.
The final function of a peer leader is to provide ongoing support (Boothroyd and Fisher 2010 a,b). Research demonstrates that DSME is effective in improving patient self-care behaviours and clinical outcomes, including H6A1c. However, these effects often diminish within 1–3 months after DSME ends (Siminerio et al. 2006b; Norris et al. 2006). Proactive, ongoing support is critical for patients to maintain improvements and work on sustaining lifestyle modifications. Peer leaders offer a flexible, non-threatening, low-cost alternative to traditional follow-up strategies. Patients are encouraged to utilise their peer leader on an as-needed basis for as long as they need, to help and support their self-care goals.
Two peer leaders wrote the following passage. It provides insight into how peer leaders feel about their role in helping to improve diabetes care. Similar passages appear throughout this chapter.
Story of the Journey (Rhonda Lee and Helen Thomasic, Lifestyle Coaches, Pittsburgh, Pennsylvania)
The textbook definition cannot fully describe what it means to be a peer leader or lifestyle coach. We are more than coaches; we are advocates, cheerleaders, and friends. Our job is to motivate and inspire people to make positive changes in their lives. As part of our job, we provide support and practical information as well as relevant personal experiences about making behavior changes. Making a behavior change is difficult and our program participants need a lot of guidance and encouragement. When you have been living your life a certain way for years it can be hard to make changes to the way you think, eat, and exercise.
First and foremost, we want you to know that you are not alone. Our mission is to encourage, support and listen as well as provide answers to your questions. As lifestyle coaches, we are there to hold your hand, to lend an ear and to guide your diabetes self-management. But, it doesn’t end there. As your coach, we are only a phone call away. When you feel you have come upon a slippery slope, we are here to help and encourage you to start again. We will help you take what you have learned during the classes and incorporate it into your daily life. We try to be open-minded and to really get to know you so we can understand the obstacles that you need to overcome. Our hope is that a cure for diabetes will be found in our lifetime. However, until that day comes, we will continue to focus our efforts on helping people to make positive behavior changes. As lifestyle coaches, we have the knowledge to help people change their lives and for us that is the most rewarding job of all.
Supporting and educating the peer leader
It is crucial for peer leaders to receive standardised training in order for them to build the skills and competencies for delivering self-management support. Most people with one or multiple chronic illnesses have problems self-managing their disease at one time or another throughout their lifetime; however, usually, they find a way to cope with these problems. It is during these problem times, though, that the use of peer leaders is particularly crucial. With standardised training and support from healthcare professionals, peer leaders offer a vehicle to enable patients to reduce their levels of stress through emotional support, access appropriate and accessible education material and clinical care, and receive required services that allows the mobilisation of multiple resources, and ultimately improved self-care.
The concept of using peer leaders for self-management support is not a new one. Peer leaders have been used across multiple disease states to provide support for HIV/AIDS patients, drug abuse prevention, tobacco cessation and on university campuses worldwide, to name a few (Swider 2002; Norris et al. 2006). However, it was only in the past decade that peer leaders gained attention in the field of DSME. In the United States, there are approximately 15,000 certified diabetes educators (CDEs) to serve the 25.8 million people with diabetes (AADE 2010).
That means there is approximately one CDE for every 1720 patients with diabetes—a daunting ratio for any healthcare professional. This disparate ratio exemplifies the necessity for healthcare systems to embrace low cost, flexible ways of dealing with the diabetes epidemic. The use of peer leaders to supplement the role of the CDE provides an opportunity to increase access to diabetes self-management support services and serves as a vehicle to defragment the part of the healthcare system that focuses on self-management support health services delivery (Conrood et al. 1994; Hiss et al. 1994; Mensing et al. 2006).
With the growing diabetes epidemic, healthcare professionals, communities and health systems, worldwide, began utilising peer leaders in their diabetes programmes, research studies and daily operations. However, for the most part, the focus remained on implementing these efforts rather than the training and education processes that are necessary for individuals to serve as peer leaders (Tang et al. 2011). Of the studies that report a standardised training component to their programme or intervention, few provide a description of the process (Joshu et al. 2007; Paul et al. 2007 a,b; Brownson and Heisler 2009: Dale et al. 2009; Tang et al. 2011). An exception to this is Project Dulce (Philis-Tsimikas et al. 2004) and the Stanford Diabetes Self Management Program (DSMP) (Lorig et al. 1999; Holman and Lorig 2000 a,b) that utilise a standardised curriculum, are evidence-based and are measurable. Both initiatives focus on training peer leaders to deliver short duration DSME programmes; however, what they lack is a focus on providing long-term self-management support (Tang et al. 2011), a concept that has been proven to be one of the cornerstones of effective diabetes care (Piatt et al. 2010).
Additionally, efforts aimed at standardising these initiatives so that they are measurable and can be replicated across settings and populations remains sparse. Nettles and Belton (2010), in their review of training curricula for diabetes peer educators, found that all peer education programmes provided training in some capacity; however, the details of the training (i.e. length, evaluation, fidelity) varied widely and few programmes conducted formal evaluation plans.
While characteristics of the training vary, there is consensus from the literature that peer leaders need to be able to communicate effectively, be willing to learn, have confidence in diabetes content and be flexible and dependable (Nettles and Belton 2010) in order to deliver effective peer education. While many of these characteristics are innate, standardised curriculum and training complement these factors, helping to ensure long-term self-management support and sustainability.
In developing a peer-training curriculum, it is important to first understand and determine the role of the peer leader. Depending on whether the peer leader will educate, facilitate or counsel will determine the type of training they should receive (Peers for Progress 2010). In general, one way for peer leaders to understand their designated role in self-management support is by practising active listening through the OARS:
- Ask Open-ended questions
- Affirm
- Reflect
- Summarise.
Is a motivational interviewing strategy often used in communicating with individuals who are trying to make a behaviour change (Miller 2009)? Tangential to OARS, peer leaders may also set SMART goals for themselves to better understand their role in self-management support (Tang et al. 2011):
- Specific
- Measurable
- Achievable
- Realistic
- Take the right amount of time (see Chapter 4).
Common concepts that are addressed in a thorough peer leader training curriculum include understanding of problem solving skills, communication skills, decision-making skills, finding healthcare resources, developing goal plans for the future, understanding the management principles of diabetes self-care, and understanding and managing psychosocial responses to diabetes (Tang et al. 2011). Through training, peer leaders will acquire supportive skills to help them to assist patients who are experiencing a variety of circumstances in their diabetes self-management. They will learn new and different ways to communicate and new techniques for dealing with emotionally charged issues.
Through active listening and setting SMART goals, peer leaders will be able to understand how patients are coping with their emotions and how to help them cope in times of particular diabetes-related distress. A standardised training curriculum also affords the peer leaders with the opportunity to learn by practice, in group sessions, when a situation requires professional intervention, a concept that is critical in peer support interventions and programmes. Training allows peer leaders to recognise when a crisis is a crisis (i.e. hypoglycaemic or major depressive episodes, or a patient who may have thoughts of suicide), and what resources are available in the community for these issues.
Along with understanding the patient, individuals who assume the role of a peer leader have certain responsibilities to themselves, the programme and the agency (Peers for Progress 2010). It is critical that these concepts are covered in the training curriculum. First and foremost, peer leaders need to be able to acknowledge their limitations. These limitations and challenges could include time commitments, the balance between training burden and volunteer status, monetary incentive amounts and literacy. Additionally, as most peer leader programmes are ‘housed’ within a research study, it is important for peer leaders to understand and be competent in human subject research interactions. Handling patient information and understanding privacy and confidentiality are components that are crucial in this setting (Halanych and Moultry 2010). If these concepts are taken into consideration during the training, the peer leaders will be apprised of their importance before the start of the programme.
In summary, training for peer support should pay attention to the aforementioned framework and address core competencies and functions of peer support as outlined in the World Health Organization’s report on peer support programmes in diabetes. These peer leader core competencies include assistance in diabetes management in daily living, social and emotional support, linkages to care and ongoing support extended over time. While these competencies apply to any peer support programme, specific approaches to addressing them may vary based on the needs and contexts of different populations and settings.
Story of the Journey (Norma Ryan, Lay Health Coach, Brownsville, Pennsylvania)
When I first heard the words of ‘Lay Health Coach’ I shuttered to wonder what that could mean. After a year of spending time with study participants, I am quite sure that the role of a lay health coach plays a very important part in diabetes management. My belief is that lay health coaches are people in the community who are known as a ‘friend’ and patients are often more comfortable sharing the good and bad of their concerns with them.
Often people feel a little intimidated to talk to a professional doctor or nurse, but that friend on the street is someone like them and they are more apt to share their failures and quick to share successes. This experience of being a lay health coach has been a very rewarding time in my life. I have learned so much that I am now able to share with family and friends. I want you to know that I am so very thrilled to have been part of this and would love to continue to help others live a healthy lifestyle. This is the beginning of a new ‘era’ of me sharing experience and knowledge with family and friends.
I am You: Understanding empathy in the field of peer education
Hojat (2007) defines empathy as ‘the projection of feelings that turn I and you into I am you, or at least I might be you’. Empathy grows throughout one’s lifetime and is more than a neurobiological response. Indeed, it brings feelings with it and helps individuals to understand who they are (Hojat 2007). The term empathy has gone through many deviations, often being thought of as a cognitive attribute, which allows individuals to understand each other, or as an emotional state of mind where individuals are more likely to share feelings, or as a concept that involves both cognition and emotion. Regardless of the definition, empathy is among the most frequently mentioned dimensions of patient care (Linn et al. 1987; Hojat 2007) and is quite possibly, the single most important component of a successful peer leader.
Empathy and sympathy
In understanding the role of empathy in peer education, it is important to distinguish between sympathy and empathy, a concept that is often confused. While both sympathy and empathy are emotional responses, empathy carries with it a clear separation between emotion and cognition. When effective peer leaders interact with patients, they are able to non-judgmentally understand the patients’ experiences and recognise that they is similar to them (i.e. they have diabetes, live in the same community, same age range, etc.), while maintaining a clear separation. This separation is what distinguishes empathy from sympathy, as empathy is an intellectual attribute and sympathy is an emotional state of mind (Gruen and Mendelsohn 1986; Hojat 2007). Empathetic peer leaders are able to separate themselves from the patients’ self-management issues and offer information and advice to improve self-care; whereas, sympathetic peer leaders have difficulty in maintaining whose feelings belong to whom (Decety and Jackson 2004; Hojat 2007).
Empathy and social support
Social support is defined as a multidimensional construct of social relationships that enhances well-being (Rodriguez and Cohen 1998) and can be thought of as the relationships that individuals have within and among family, friends, the workplace, the community and the health system. Morgan (Morgan 2002) believes that a strong, functional support system requires empathy at its core (Hojat 2007). Central to this belief is that a social support system provides cognitive and emotional resources that benefit an individual’s ability to cope with stress (Rodriguez and Cohen 1998). In fact, there is significant evidence that demonstrates that social support is either directly or indirectly related to improved physical, mental and social well-being, the three cornerstone elements of the World Health Organization’s definition of ‘health’. Likewise, research demonstrates the risk of physical illness worsening, when a person’s social connection becomes weak or fragmented (Hojat 2007).
When we think about how peer leaders function among patients with diabetes, it is clear that they provide an outlet for people to talk about the concerns and feelings they have about their self-management. This relationship is often formed by the need for personal connection that increases with illness. The empathic connection between a patient and a peer leader may serve as an independent social support system (Hojat 2007). Patients are able to ‘open-up’ to peer leaders, because in general peer leaders possess high degrees of active listening skills and work on maintaining empathetic connections with the patients. It is through this empathetic connection within a positive, social support system, that patients often begin to reflect on their barriers and challenges to diabetes self-management at deeper levels, which in turn may lead to a positive health outcome.
Empathy and patient relationships
It is well documented in the medical literature that clinicians as well as patients may benefit from empathic engagement (Hojat 2007). So, it stands to reason that the same scenario may be present for peer leaders. During times of understanding and connectedness between the patient and the peer leader, physiological and emotional responses may be apparent. Patients may feel that they are immediately ‘understood’, as if the peer leader is experiencing the situation from inside the patient’s world, by a sense of being part of a larger whole and by feelings of peacefulness that relate to connecting to someone who truly understands them. These moments may be therapeutic for both the patient and the peer leader and may lead to improved diabetes self-care for both individuals.
Evolution has taught human beings to be social and it is through evolution that humans have the ability to understand others and the skills to communicate that understanding (Hojat 2007). The connections that humans have with each other are the cornerstone for empathetic growth.
Story of the Journey (Millie Glinsky, Lay Health Coach, Indiana, Pennsylvania)
When developing my most recent coaching ‘curriculum’ for a series of sessions I am currently conducting, I titled it ‘Value Yourself—one small change changes everything’. I was excited about the series because the sequence was planned to build a focus on making lifestyle changes in the ‘big 3’ areas. The ‘big 3’ of course being exercise, nutrition and stress management. Instead of developing exercise and calorie goals to lose weight and get healthy, I asked patients to write down what it means to ‘value yourself’ and these responses would be compared to responses to the same question at the end of the ten week series.
What I was not prepared for was the intimate and trusting class environment that happened early in the program. Men and women who didn’t know one another in the first class were sharing personal fears and disappointments by the third meeting. Each personal weekly goal was met with a feeling of group support and encouragement. Successes were applauded and struggles were examined for possible redirection and solutions. Although I acted as guide and leader, discussions and insights came from the patients. In working through many of their shared concerns and previous ‘failures’ at losing weight, everyone developed a more tolerant attitude toward themselves that paved the way for improved lifestyle choices and behavior change.
As predicted, the responses to the original question of what it means to ‘value yourself’ changed dramatically by the end of the ten week series. Patients learned about themselves, about one another and also about me, as their coach. But the greatest surprise of all was how much I learned from them, which, for me, holds the greatest value in helping others become more who they are meant to be.
I’m a diabetes educator who has diabetes—can I be a peer leader?
Peer leaders are individuals who have knowledge from their own experience with diabetes or from family members or close friends who may have the disease. In most circumstances, peer leaders have experienced success in their own diabetes self-management or have helped others to experience success. Although many healthcare systems, worldwide, are recognising peer leaders as critical components of the healthcare team, the main function of a peer leader is to provide support, not to make healthcare recommendations that only professionals, such as diabetes educators, could make (Lorig et al. 1999; Holman and Lorig 2000 a,b; AADE 2010). Peer leaders serve as a ‘complement’ to clinical care and diabetes self-management education, not as a replacement.
It is well documented in the literature that DSME is effective and leads to both clinical and behavioural improvements in diabetes self-management (Norris et al. 2002; Siminerio et al. 2005; Siminerio et al. 2006 a,b; Piatt et al. 2006, 2010). However, scientific evidence is beginning to accumulate that demonstrates additional benefit from learning from peer leaders—individuals who are living the experience everyday and are facing the same issues in navigating the health system, handling finances and dealing with emotions and family dynamics (Boothroyd and Fisher 2010 a,b; Peers for Progress 2010).
Norris et al. (2006) documented in her 2006 review of 18 studies using peer leaders that participants were satisfied with their peer leader and their diabetes knowledge improved. Additionally, improvements in physiologic, lifestyle and self-care outcomes were noted. These improvements, however, do not discount the effectiveness or impact of the diabetes educator.
As the epidemic of diabetes continues to worsen, diabetes educators may effectively reach more people with diabetes by expanding their education team to include peer leaders, not serving in the peer leader role themselves (AADE 2010). As the peer leader evidence demonstrates, having diabetes is not enough to qualify someone as a peer leader. Peer leaders live, work and function in the communities in which their patients live. Self-management support delivered by peer leaders often takes place in community settings, such as churches, community centres, fire halls and schools, which are convenient and familiar to patients (Holman and Lorig 2000a,b). Additionally, unlike diabetes education, peer leader self-management support often takes place during off hours or on weekends, or even by phone or email and is by and far not clinical in nature.
Indeed, peer leaders mostly work on goal setting and problem solving with patients, not providing clinical advice. And most importantly, peer leaders are people who are known in the community, trusted and culturally competent. They understand the barriers and challenges that people with diabetes face in their respective communities and are able to offer alternatives and suggestions to help patients in dealing with their diabetes. Peer leaders are usually never health professionals. Indeed, they are often retirees or homemakers with a special interest in diabetes and are personable, empathetic and communicate well (Philis-Tsimikas et al. 2004; Halanych and Moultry 2010; Peers for Progress 2010).
In contrast, diabetes educators who have diabetes have years of experience working within a healthcare system and have a deep knowledge and understanding of diabetes. Therefore, they may not be able to convey the sense of support and camaraderie that patients need. Indeed, it is often the case that patients will seek out the peer leader to ask a question, rather than the diabetes educator for fear that the educator may judge them or give them information that does not pertain to their situation.
Scientific and programmatic evidence continues to build for the incorporation and utilisation of peer leaders within the healthcare system. Not only do they provide a low-cost, flexible means of increasing access to diabetes-related services, but they also provide an opportunity for long-term diabetes self-management support, which is currently not being addressed. The American Association of Diabetes Educators suggests that in order to meet the demands of the diabetes epidemic, diabetes educators and CDEs, regardless of their diabetes status, should incorporate peer leaders into their diabetes education team to help to curtail the ever-worsening diabetes epidemic.
The following passages were written by patients who are part of a research study focused on testing the effectiveness of peer leaders within a diabetes care delivery system (Piatt et al. 2010). They underscore the main differences between peer leaders and diabetes educators, from a patient perspective.
Story of the Journey (Study Participant, Project SEED: Support, Education, and Evaluation in Diabetes)
I think of my peer leader as a friend; as someone we can relate to cause of her diabetes. She tries to relate to each of us in the study group. When we talk on the phone, which is very helpful, she always tries to bolster your spirits. She also shares her own ups and downs. Always ready with ways she can help you.
I feel that my diabetes educator is the professional—someone who I can trust with my diabetes and issues. She is like having my own doctor at the meetings. She always answers everyone’s questions with a certain layperson appeal. She breaks down answers to our questions so we can understand our diabetes. My diabetes educator has personally helped me better understand my diabetes.
Both my peer leader and my diabetes educator are an asset to our group.
Story of the Journey (Study Participant, Project SEED: Support, Education, and Evaluation in Diabetes)
My peer leader has knowledge through experience of diabetes. My diabetes educator’s knowledge comes from educational learning and training.
My peer leader’s obvious compassion for others with this affliction and her willingness to help is a blessing.
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