We have two ears and one tongue so that we would listen more and talk less.

(Diogenes Circa 230–150 or 140 BC)

Introduction

The person with diabetes who knows the most, lives the longest (Joslin 1921, quoted Levetan, 2001). However, the reality nearly one century later, has altered for diabetes educators and is best summed up by William Arthur Ward, scholar, author, editor, pastor and teacher, who said:

Teaching is more than imparting knowledge; it is inspiring change. … Learning is more than absorbing facts; it is acquiring understanding.

Patient education is the cornerstone of diabetes care and education improves glycaemic control (Ellis et al. 2004). Diabetes self-management education (DSME) is defined as the ‘ongoing process of facilitating the knowledge, skill, and ability necessary for diabetes self-care’ (Funnell 2007, 2010). DSME incorporates a number of components that include needs, goals and the individual’s life experiences, all of which are guided by ­evidence-based practice. The overall objectives of DSME is not just to ­provide information, but rather to support informed decision-making, effective self-care behaviours, problem-solving skills and actively and ­collaboratively work with a healthcare team to improve clinical outcomes, health status and quality of life (Funnell 2010).

In 2008, the American Association of Diabetes Educators (AADE) launched the Diabetes Self-Management Education (DSME) Outcomes Continuum. The DSME framework provided the components to measure, monitor and manage diabetes education and its outcomes, but most importantly it emphasised that DSME does not simply focus on the person with diabetes attaining knowledge and skills because these factors do not necessarily influence clinical improvement. DSME provided the educators with the building blocks to alter behaviour that brings change.

The AADE also developed the Seven Self Care Behaviours (AADE7™, Tomky 2008), which is now used in other countries such as Australia. The seven ­behaviours are seven key steps (behavioural changes) that can improve health and well-being:

About 40 years ago, Knowles described the principles of adult learning, which are described in Chapter 3. Diabetes educators need to follow these principles when teaching adults with diabetes. However, diabetes educators are far more than ‘teachers’; their role includes coaching, motivating, guiding, facilitating, acting as a consultant, negotiating, marketing and counselling.

The phrase ‘patient journey’ is used, and often misused, to describe clinical pathways and diabetes service models. I use the term to mean the person’s emotional, social and physical state at the time of the consultation. For example, questions to consider when using the Flinders Model (2005) may include:

• Are they in shock or denial following the diagnosis of diabetes or the diagnosis of a complication?
  
• Do they feel having diabetes is unfair?
  
• Do they attending the appointment intend to bargain over treatment strategies?
  
• Are they sad or withdrawn and unable to envision a future with ­diabetes?
  
• Are they dwelling on the past without diabetes?
  
• Have they accepted the diagnosis and moved on?

The clinical experience

Diabetes education concerns explaining to people with diabetes why they need to do certain things, not telling them what to do. Likewise, ­bombarding the person with a barrage of pathophysiological concepts, brochures and handouts and expecting them to make the recommended changes is rarely successful. Ask yourself:

Do I really need to know how my car works—the engine, the electrical ­system, the carburettor, etc., to understand where the petrol and water goes and that I need to have the car serviced regularly? Is it more important for me to drive my car safely and to recognise when it is not working properly and how to get help?

People can undertake successful diabetes self-management that achieves positive outcomes with a high degree of mastery without knowing ­diabetes pathophysiology. The educator demonstrates real knowledge and skills when they transform very complex and complicated diabetes information into simple concepts the individual and their family can understand. The art of diabetes education is being adaptable enough to be able to ­communicate in different ways and styles to suit the individual’s needs.

Most people with diabetes are grateful for any information about diabetes self-management. Yet educators must constantly ask themselves: ‘Am I really communicating effectively with this person?’ The person might nod or answer ‘yes’ when you asked ‘do you understand what I mean?’ to please you or not to appear stupid, but such body language does not ­necessarily convey understanding. Likewise, when a person says ‘no’ when you ask ‘do you have any more questions’, they may not actually mean ‘no’. Rephrasing the question using different words might evoke a different response.

Educators have a very small window of opportunity to make a real ­difference in the lives of people with diabetes. Health professionals (HPs) only spend about 0.02% of the time an individual with diabetes lives with their diabetes. HPs expect the individual to perform the seven ­self-­management behaviours the remaining 99.98% of their lives. Thus, ­diabetes education needs to be dynamic and focused.

One of the biggest mistakes I made when starting out on my journey as a diabetes educator was trying to ‘educate’ the ‘patient’ about all aspects of diabetes in the initial consultation. Educators are often under pressure to provide education within a particular session or timeframe. Some ­educators respond by ‘telling’ people ‘all they need to know about ­diabetes’ in case there are no other education opportunities. Sometimes service systems and health funds limit the number of diabetes education appointments a person with diabetes is entitled to.

Many HPs, including diabetes educators, use ‘tick box’ assessment tools, which were originally developed to ensure key issues are not overlooked. Although tick boxes elicit information, and fulfil quality management requirements, they largely restrict people to ‘yes/no’ responses, thus patients and their carers may not be able to share important information that could influence their care plan.

Education ‘tick lists’ can help newly qualified educators focus the ­consultation and build their self-confidence until they find their own ­education style. Tick boxes are not laws written on tablets of stone; they are merely one tool to help educators elicit information. Following them slavishly can result in ‘factory line diabetes education’ and inhibit the educator’s personal and professional growth and development. Adopting a ‘one size fits all’ approach is one of the greatest mistakes an educator can make.

Many years ago when I was undertaking diabetes educator training, I observed the staff of a highly regarded diabetes education centre that conducted a 6 week individual education programme for people with T2DM. I can still hear a man ask about erectile dysfunction in week 3. He was told that erectile dysfunction would be addressed in week 6, not today. I will never forget the devastated look on the man’s face. I could not understand why his question was not answered when it was clearly important to him and he felt comfortable enough to discuss such a ­sensitive topic with two female HPs. I suspect his question was not addressed at all by week 6. I vowed that, if I were ever lucky enough to work as a diabetes educator, I would never ignore an individual’s question. To do so might miss the ‘teachable’ moment.

Educators teaching Indigenous people develop considerable skills in teaching at teachable moments and eliciting people’s stories. One of the first ‘rules’ educators learn when they engage with Indigenous people is to ‘find the story’. In other words, find out what makes the individual tick, how they were diagnosed and the circumstances around the diagnosis, and their life circumstances. Such information is essential, regardless of the individual’s diabetes type, age, gender and culture. Individual’s social history, home and work situations, and relationships have a direct impact on diabetes self-management, see Chapter 2.

The first question I ask any individual with diabetes, no matter the duration of their diabetes, is: ‘did it surprise you when your doctor said you have diabetes?’ I do not believe many educators ask the question, yet it yields a great deal of information about the person’s beliefs, feelings and often issues that need to be addressed during the appointment. It is quite common for people to state being diagnosed with diabetes came as a surprise and that they were shocked by the diagnosis.

The feeling of disbelief can be so great that the person may not believe they have diabetes, especially if there are no obvious signs or symptoms. It also puts other life events that were occurring at the time of diagnosis, that years later could still be impacting on self-management, into context. Other patients, however, indicate they thought ‘something was not quite right’ with their health when diagnosed. Sometimes people are ‘relieved’ to know they have diabetes because they feared they might have ‘­something worse like cancer’.

Such information can help identify the issues behind denial and ­questions about whether they really have diabetes. The diabetes educator can explain what the pathology tests mean for the individual and help them identify their diabetes risk factors and how they think they could manage them, or identify whether the diagnosis of diabetes was a catalyst for other life-changing events.

Some older people recently diagnosed with T2DM diabetes, who live a very healthy, active life, maintain a healthy weight and have few other health condition problems, feel particularly upset about being diagnosed with diabetes. Many people believe T2DM is caused by living an unhealthy lifestyle, eating junk food and inactivity. There is a very real stigma ­associated with T2DM; people in the community and many HPs make value judgments about people with T2DM diabetes. In addition, people with T1DM want clear messages to be promulgated to the community that T1DM is not solely a ‘lifestyle disease’.

In Australia one in four people over age 75 has diabetes, often because of increasing age (AusDiab, 2000). It can be useful to focus on the main diabetes risk factor for these people—their age. For example: ‘Remember years ago when people got diabetes because of old age, that maybe the pancreas just isn’t meant to live to be 100, and maybe it’s all due to a bit of wear and tear’.

An 80-year-old newly diagnosed person with T2DM may not need to make any great changes to their diet, in fact, they have probably followed a ‘diabetes diet’ for most of their life, thus developed diabetes at 80 instead of age 40. Spending time at the start of a consultation to identify the ­individual’s immediate concerns helps the educator focus the teaching.

Some people regard being diagnosed with diabetes as the end of their world, for example, if they watched someone close to them die from ­diabetes complications or they remember a family member or friend sharpening needles before they injected their insulin. It is important for the diabetes educator to know such experiences so they do not ­unknowingly make comments such as: ‘well if you don’t take diabetes seriously you too could lose a leg and go blind like your mother did’.

The educator should explain that everyone’s diabetes is different and what happens to one individual does not necessarily happen to ­others. In addition, it is an opportunity to explain and demonstrate modern medications and monitoring equipment and that having T2DM can ­actually be an opportunity for positive change. For example, ‘having type 2 diabetes can actually make you a lot healthier if you’re prepared to take on some diabetes self-management’. People often comment several months, sometimes years later, that being diagnosed with T2DM was the impetus they needed to make the changes in their life and have a healthier and longer life.

However, as mentioned previously, other people are relieved to have diabetes and ‘not something worse’. One 60-year-old lady with Latent Autoimmune Diabetes in Adults (LADA) whom I educated was so relieved to learn her weight loss and feeling unwell were due to T1DM and not cancer, particularly bowel cancer, from which her husband died the ­previous year. She found managing her diabetes, including basal bolus insulin a ‘breeze’ compared to the chemotherapy her husband had endured.

Some diabetes educators ask people with diabetes whether they have a family history of diabetes. This question will only elicit limited ­information. Rephrasing the question to ask about the individual and/or family’s ­experience of diabetes is more useful. The responses to the two questions are usually very different because the focus is different and the second question is less judgmental. Some people have a family member or a close friend who manages the day-to-day challenges of diabetes and remains well, enjoying the things they like to do, which can be a positive role model. For example:

When mum got diabetes, she changed the way she was eating, bought herself a little dog to walk each day, lost weight and really became a much more positive person.

Other people recall negative experiences, one man said:

My dad had type 1 diabetes and it was though the whole family had to have it too, we all had to eat at a certain time and certain foods because of dad’s diabetes and we couldn’t do the things that other kids did like camping holidays because of dad’s diabetes.

It is important to know the family experience when a person is referred to you to start insulin after ‘failing on oral medications’. They might be frightened about injecting insulin because of their family experience. Interestingly, people do not seem to have the same fear about injecting GLP-1 mimetic agents, even though they are afraid of insulin. This ­anecdotal observation suggests fear is related to insulin rather than ­needles or having to self-inject. Careful questioning will help distinguish the source of the fear so appropriate education and/or counselling can be ­provided.

I remember a person with T2DM I taught before insulin pens were ­available, so he needed to learn how to use a syringe. He had needle ­phobia. For nearly an hour we discussed his fear of using a syringe and his story changed my approach to insulin-related fear forever. The man’s father had T1DM, and when he and his siblings misbehaved, the father chased them around the house brandishing his glass syringe with the ­needle stabbing at the children as a form of punishment.

Learning styles

Learning theories are outlined in Chapter 3 but a brief outline of teaching and learning styles is presented here. Lifelong learning involves all five senses, sight, speech, hearing, touch and smell, whether the teaching style is active or passive. According to Dunning (2009), learning styles refer to the way an individual acquires, processes, recalls and uses information. Kolb (1984) identified several different learning styles that encompass ­different learning processes and teaching strategies and noted that a ­combination of teaching styles are usually needed, especially in group education to cater for a variety of learning styles, see Table 10.1.

Education involves explaining why something may or may not work, rather than telling people what to do. If you tell a person what to do, they may follow your advice but not understand why or what the benefits are. This means they often stop following your advice because they cannot see the value of continuing. Telling a person why daily activity is important, why insulin is needed, why they need to see a particular specialist makes a difference to their understanding and willingness to continue the behaviour(s). Explanations need to contain a number of elements including the following:

• Being honest and open in your approach.
  
• Being consistent in the message you convey and use correct termino­logy and appropriate language (see Chapter 6).
  
• Simplifying very complex concepts into easier to understand language.
  
• Determining and building on the individual’s existing knowledge base and experience.
  
• Using catchy phrases, if appropriate and culturally relevant. Rhymes are a good strategy, especially with children.
  
• Using visual aids.
  
• Asking the ‘right’ questions.
  
• Linking treatment strategies to basic pathophysiology and symptoms.
  
• Explaining the gaps in our knowledge, research and technology in an understandable way.

Lien at al. (2010) outlined six key points educators need to consider before they begin to teach:

Table 10.1 Learning styles and some teaching strategies that can be used to facilitate learning.

Be honest

Do not suggest a strategy or course of action you think is inappropriate. You might think a strategy the person wants to try will be ineffective, but give them relevant balanced information, allow them to make the choice and take the responsibility for their decision. It can be helpful to set a time to determine the effects of the individual’s choice. For example you could say:

Ok let’s see what happens when you change your breakfast cereal and type of bread and make a time in four weeks to look at your blood glucose levels again. If your levels are still high we will need to review your ­diabetes ­medicines.

Provide easy to understand explanations about why you believe some strategies will have minimal or a detrimental effect. Using evidence-based information is useful.

Another aspect of honesty is reflection on your own life and more importantly your lifestyle. How healthy is your lifestyle and if it is unhealthy, how much credibility do you have as a diabetes educator? If the person smells cigarette smoke on you and you are suggesting they need to give up smoking, how effective do you think your message will be? Do you eat a healthy diet and do you exercise on a daily basis? If you don’t, how convincing will you be when you explain the benefits of these ­behaviours to people with diabetes? Being a skilled and compassionate educator means ‘talking the talk and walking the talk’.

Consistent and correct terminology

The words or phrases diabetes educators use can influence self-­management (Diabetes Australia 2011). A common inaccurate term is ‘blood sugar’: there is no such thing as ‘blood sugar’. The correct term is ‘blood glucose’. You might ask ‘Does it matter? It is only semantics after all.’ Yet when a person has hypoglycaemia, the quickest way to increase the blood glucose level is to ingest glucose. Treating hypoglycaemia with sugar takes longer to raise the blood glucose because sucrose and fructose need to be converted to glucose before they can be absorbed into the blood system. Using the phrase ‘blood glucose’ might help the person with ­diabetes understand glucose metabolism, the recommended dietary guidelines and glycaemic index.

Likewise, the word ‘glucometer’ is often used to refer to a blood glucose meter. Glucometer production ceased many years ago, thus most younger people, including community pharmacy staff who sell blood glucose meters, are unfamiliar with such equipment.

Using positive terminology is more than trying to turn a half empty glass into a half full glass. Terms such as ‘diet’ and ‘exercise’ have negative connotations for many people regardless of whether they have diabetes or not. Phrases such as ‘healthy eating’ or ‘daily activity’ are more positive. Some countries use the word ‘shots’ to describe insulin injections, but the word has negative connotations in other countries associated with illegal drugs and stigma. ‘Injections’ or ‘doses’ might be more appropriate (see Chapters 2 and 6).

Simplifying complex concepts into easier to understand concepts

Diabetes is a very complex range of disorders and we still have a lot to learn about diabetes. T1DM is very different from T2DM. In the latter, a number of key metabolic functions are ineffective. Using familiar ­metaphors for complex pathophysiology and pathology is useful.

When I discuss changes that could help improve diabetes control, I often mention small changes that people might think are too small to have an impact. These could include the milk used in two cups of tea each day, placing the cooked steak on paper towel to drain more fat from it before eating it, walking a couple laps of the shopping centre before going into the supermarket. I reinforce that these small changes have a cumulative beneficial effect if they are done regularly.

Advanced glycated end products are a very complex clinical phenom­enon. However, it can be simplified by describing how hyperglycaemia ­irritates the lining of large and small blood vessels causing damage that allows circulating fats in the blood to stick onto the lining like ‘fluff onto Velcro’. It also helps explain why lipid targets are so low for people with diabetes and why most people require statin therapy to reach lipid targets.

Using a car analogy to explain blood glucose is sometimes helpful. For example, glucose is the ‘petrol’ the body needs, the cells are like a car engine and insulin is like a ‘petrol pump’. TIDM has no ‘petrol pumps’, T2DM does, but they do not work very efficiently. Regular complications screening can also be described as regular ‘car servicing’ to explain the need for routine complication screening to detect problems early so that they can be treated before they cause too much damage.

I often described nephropathy as being like ‘straining spaghetti’. Just like a colander, little holes in the kidneys can widen when blood glucose, blood pressure and lipids are too high, which allows protein from the blood to escape into the urine.

Using the individual’s knowledge and experience

As previously mentioned, finding out what makes the individual ‘tick’ is very important. Information such as their understanding of diabetes, how diabetes fits into their lives and their previous experience of diabetes through family and friends helps the educator plan education and ­support. It is very helpful to know whether the individual has participated in other health programmes so that you can build on that information. Cardiac rehabilitation group education following surgery represents an ­opportunity to explain that ‘the diabetes diet is very much like the heart diet with less refined sugar in it’. Being aware of the person’s life experiences is a key principle of adult learning.

The reverse is also true; particularly for women with a history of ­gestational diabetes (GDM) who develop T2DM. These women need to know that the intensity of GDM treatment is different from T2DM ­management. For example, blood glucose testing will be less frequent, a variety of glucose lowering medicines can be used when a woman is not pregnant and glycaemic targets are less stringent. Many people find the dietary guidelines and recommendations confusing, particularly if they have been given conflicting information by different HPs.

I often ask older people with T2DM what they used to eat when they were 8 years old. If they are unsure how to respond, I describe what I ate when I was 8. We ate a healthy diet with very few ‘take away foods’ or sweets because of financial constraints, yet it was a balanced diet that met current healthy eating recommendations. I discuss the concept of ­everyday versus someday foods where soft drink, chips, sweets and chocolate ­biscuits are the ‘someday’ foods or irregular treats. Such imagery can help reinforce information they actually know and help them retrieve it from long-term memory stores. Sometimes it comforts older people to know some old ways are better than some new ways.

‘Catchy’ phrases

Using catchy phrases, often derived from television advertising or slang, can help the educator describe some complex diabetes concepts to people with diabetes and other HPs, provided the target audience understands the slang and the language is culturally relevant and not obscure (see Chapter 6). For example, when informing the individual it might take days or weeks to see a change in blood glucose after starting some ­medicines, I say ‘it’s a bit like that shampoo ad, it won’t happen overnight but it will happen’. Many people, especially older men, know the television advertisement and the super model who starred in it! Another example is: ‘Hyperglycaemia feels like you are only running on one or two cylinders’.

When people are in denial, diabetes and its effects, particularly the thought of insulin, can be frightening. Sometimes, people refuse to ­consider starting insulin despite marked hyperglycaemia and the known health benefits say: ‘well you’ve got to die of something’. My response is ‘well diabetes won’t kill you, but the disability from the complications might make you wish you were dead. Think about what it would be like if you have a stroke and you need care in a nursing home to eat your food and use the toilet.’ Some readers will ­consider this to be a harsh response but reality is also harsh.

When starting a person with T2DM on insulin, I try to ‘sell’ the idea that it is a fresh start. ‘It’s not you and what you are eating or doing, but your tablets that are letting the side down, that care coming up short and no longer keeping up their end of the bargain.’ I explain that insulin is has fewer side effects than GLMs and explain that anyone with diabetes, no matter their age, even if they are pregnant, can use insulin safely, that in many ways it is quite a ‘natural medication’ helping to boost their own insulin production. The trouble is, injecting is very ‘unnatural’ for most people.

Sometimes I describe glargine insulin as ‘mild’ insulin that acts a bit like a ‘thermostat’ because it does not have a peak action like other insulins. Some people who are extremely fearful of hypoglycaemia find this ­explanation reassuring. In addition, I focus on the positive changes people make, including having regular pathology investigations, which is an ‘insurance policy’ for better health. Once I heard low glycaemic index (GI) foods described as low ‘human interference’ foods, which I found very helpful when discussing breakfast cereals with the people I teach.

Visual aids

A lot of the learning is visual; thus visual images can be very powerful teaching tools. Dietitians have used a variety of visual aids such as food models to illustrate fat on meat, serving sizes, the types of foods recommended, for many years. They use food packages to teach label reading, including teaching during ‘supermarket education tours’, which makes the learning experience more real than in an office or a health centre.

I have a number of posters in my teaching room that show the different amounts of fat and sugar in certain foods. Most of the people I teach ­comment on the amount of sugar in orange juice and cola, which is almost identical. I also have an empty 600 mL cola bottle filled with white sugar equal to the amount actually in a 600 mL bottle of coke. Flip charts, diagrams, white boards, dolls, blood vessel models clogged with fat are also useful teaching tools. A combination of written information and pictures is usually more readable than a lot of text, especially if the person has literacy deficits.

When discussing recommended footwear, I ask the individual to take their shoes off and trace their foot on a piece of paper, then place their shoe over their foot trace and describe where the shape of their foot does not fit within the confines of their shoe. This activity is very helpful, particularly for women who persist in wearing shoes that, although stylish, restrict their feet and are potentially harmful.

Asking the right questions

Knowledge is powerful. Knowledge about diabetes and its management is powerful, for the person with diabetes/carers and the educator. Yet, the most knowledgeable diabetes educator may not elicit the relevant or even correct information from a person with diabetes because they do not ask relevant questions, or do not ask them in a way the individual can or will answer.

Asking closed-ended questions elicits limited information and sounds like an interrogation process to the person with diabetes. Asking open questions that require a more detailed response helps the educator acquire the information they need to build a picture of the reality and challenges the individual’s life and gives the person a sense of mastery over the ­education session. The way questions are worded and the association with poor medicine compliance is discussed in Chapter 11. Open-ended ­questions produce a more honest response than closed questions. Examples of open-ended versus closed-ended questions are shown in Table 10.2.

Many health professionals including diabetes educators use ‘tick box’ assessment forms. Tick boxes are a good example of closed ­questions and may not elicit the sort of information that is really useful to understanding an individual’s diabetes and their self-management ­strategies. The ADEA (2010) produced self-management information for people with T2DM that includes a number of questions people should ask HPs about their medicines, including:

• Why am I taking this?
  
• What effect does it have?
  
• How does it work?
  
• When should I take it and how long should I take it for?
  
• Are there side effects?
  
• What do I do if I miss a dose?
  
• What did I do when I’m sick?

Table 10.2 Example of some alternative ways to ask key questions.

Detailed information about engaging with people with diabetes about their medicines can be found in Chapter 11.

Health literacy

Health literacy is defined as:

The degree to which individuals have the capacity to obtain process and understand basic health information and services needed to make appropriate health decisions.

US Department of Health and Human Services (2010)

The American Medical Association stated:

Poor healthy literacy is a stronger predictor of a person’s health than age, income, employment status, education and race.

Research indicates that inadequate health literacy is independently ­associated with worse glycaemic control and higher rates of retinopathy in people with T2DM (Schillinger 2002). People with low literacy levels are more likely to

• Be hospitalised
  
• Stay in hospital longer
  
• Be unable to comply with recommended treatment
  
• Make an error with their medications
  
• Be sicker when they do seek medical attention.

A large Australian adult literacy survey was conducted 2006 that ­measured the following domains: prose literacy, document literacy, numeracy and problem-solving. Five levels of proficiency were determined, level 1 ­indicated the lowest level and level 5 the highest literacy level. Level 3 was regarded as the minimum level needed to navigate the demands of ­everyday life and work.

Forty-eight per cent of women and forty-three per cent of men aged 15–44 years, representing Generations X and Y, who are known for their technical skills and knowledge had a literacy level 3 or above. Literacy level declined markedly with increasing age; only 17% of people aged 65–74 years met the required literacy level. People with sufficient health literacy had more years of formal education, were employed as a ­professional, earned more than AUS$60 000 per year and were either born in Australia or were English speaking (Australian Bureau of Statistics (ABS) 2006).

More recently, a literacy survey in Adelaide involving 3000 people aged over 15 years found people with inadequate health literacy were more likely to have diabetes, cardiac disease or stroke and were less likely to have recently attended a doctor (Adams et al. 2009). The consequences of inadequate health literacy and the impact on diabetes education are as ­follows:

1. Health protection; such people are unlikely to be able to:

a. Read articles in newspapers and magazines

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