Lucy Wong Hernandez: Good morning and welcome to the 2009 Southeast TACE webinar series. My name is Lucy Wong Hernandez and I am the Project Director for the TACE Center in Region IV. The TACE Center’s mission is to improve the quality and effectiveness of vocational rehabilitation services and enhance employment outcomes for individuals with disabilities in the eight southeastern states: Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina and Tennessee. The TACE Center is in collaboration with the DBTAC Southeast ADA Center. Both the TACE Center and the Southeast ADA Center are managed by the Burton Blatt Institute of Syracuse University, New York. As part of the TACE Center’s regional activities we are hosting a series of training webinars this year. If you have already signed up that is great, if not, please visit our website or our new TACE webinar room to see the many training webinars that we are offering this year. Registration will open one month before the session is scheduled so mark your calendar to sign up for those topics that you are interested in when the registration opens. All instructions and materials for each training webinar are posted on our website and familiarity with this information will greatly enhance your participation and learning experience.
The online conference system we use is fully accessible integrated data and voice medium that enables us to conduct training webinars over the internet from just about any computer with an internet connection and web browser. Please note that long distance charges may apply. There are many computer issues that are beyond our control, but there are a few things you must do to enhance your experience and it is really important to check your computer prior to the session. We are unable to trouble shoot technical issues right before the webinar begins. You can only ask questions by typing in the public chat area. I will follow these questions and direct them to our featured speaker at the appropriate time. I will voice the questions for the benefit of all participants, the captioner and the transcript. Another thing to remember is that you should close all other applications and automatic system checks on your computer during the webinar, this is to eliminate potential interference. Finally, if your computer is connected to a network and has a firewall remember to press the space bar once in a while during the webinar to let the system know that you are still present, sometimes networked computers shut down if the computer is idle for too long.
Today’s format will be as follows, our featured presenter will speak for about 60 to 70 minutes. During the presentation you can type in your questions into the chat area, and the presenter will stop and try to answer as many questions as possible as they come up. At the end of the presentation any remaining or new questions will be answered as time allows. Again, all questions will be read aloud for the benefit for all participants and also the captioner.
Today's presentation is titled Ethical and Professional Issues for Rehabilitation Counselors Related to Self-Management and Adherence to Treatment. We are privileged to be joined by our featured presenter, Dr. Malachy Bishop. Dr. Bishop is a professor at the University of Kentucky and a contributor to the TACE Learning Consortium. His bio is posted on the TACE website along with our webinar material. I hope you had the opportunity to read it and now I will ask Dr. Malachy Bishop to begin his presentation.
Dr. Malachy Bishop: Good morning and thank you, Lucy. I am Malachy Bishop. I am going to begin the presentation, the first slide, The Ethical and Professional Issues for Rehabilitation Counselors Related to Self-Management and Adherence to Treatment. Moving on to slide two.
Slide two is about the purpose of this presentation. In this presentation will be exploring the ethical and professional implications of self management and treatment adherence for Rehabilitation Counselors. There is quite a bit of information to cover here and I will try to move quickly to get through it all and answer all your questions. One thing that I will say is that rehabilitation counselors are certainly, increasingly, working with clients with chronic conditions that involves complex treatment. These treatments frequently interact with the rehabilitation counseling process. Moving on to slide three.
Continuing the purpose. Effective rehabilitation counseling incorporates consideration of these elements. I am going to suggest today in a number of ways that is important that rehabilitation counselors have a familiarity with the concepts of self-management and treatment adherence and that we integrate these into our practice. We will also be talking about why these are often neglected in rehabilitation counseling and finally we will be defining and discussing the ethical and professional considerations for rehabilitation counselor in assisting clients to make the informed personal decisions about their illness management and adherence in the context of the rehabilitation counseling relationship. Moving on to slide four.
The learning objectives. The learning objectives for this presentation are that the participants will understand the concept of adherence to therapy and the significant and complex barriers to adherence that people face. You will understand the concept of self-management as a multidimensional framework for maintaining optimal personal health. We will understand the complex ethical and professional role of rehab counselors too assisting clients to make informed personal decisions about self-management and adherence and we will learn and talk about assessment and counseling approaches for using self-management and adherence effectively as rehabilitation counselors. Moving on to the slide five.
Slide five is entitled self-management and adherence. This is simply a graphic that I developed to clarify and introduce the idea. Although the two concepts of self-management and adherence are sometimes considered separate and are, indeed, really separate ideas, they are in fact, related and I see adherence as part of the larger picture of self-management. That is how we will be thinking about it, these ideas, these concepts, and today, as related but also distinct ideas. So, moving on to slide six.
Beginning with a question. To begin with this morning, I would like to start this question and a couple follow up questions to frame our discussion. The question is, do rehabilitation counselors have a role in promoting self-management and treatment adherence? I think there are probably arguments to be made on either side of this question. We will be looking at both sides of the questions today. I will be offering several reasons why I, personally, do think that rehabilitation counselors do and should have such a role. The follow-up questions are, if so, if we do have such a role, then why? If so, how do we effectively integrate self-management and adherence into our professional counseling? I will be addressing the first question, do we have a role in promoting self-management and treatment adherence from a number of perspectives, including a professional role and function perspective. I will be talking about an ethical perspective, an advocacy perspective and an evidence-based rehabilitation counseling outcomes perspective. I will address the question from a number of different perspectives. We will be looking at this from a few angles. Before we get into that and before we start answering that question, I will take a few minutes to look at the definitions and meanings of these concepts, self-management and adherence. Moving on to slide seven.
Defining self-management. The concept of self-management has really emerged over the course of the last 40 years with significant changes that we are all familiar with in medical care and the ways that we all think about medical care and our health. The term self-management was coined by Thomas Creer in the 1960's in his work with children with chronic illnesses but has not really gained widespread acceptance until the last couple decades. We really started hearing and talking about this idea. The idea that we are all individually responsible for our own health, including if we have a chronic illness, for the management of that illness is what we are talking about. As Lorig and Holman pointed out in a recent paper, just like one cannot communicate, in other words you can choose not to communicate, but even if you do so, even if you fail to speak and make eye contact and so on, you are, in fact, communicating that you do not wish to communicate. One cannot not communicate. And the same thing Lorig and Holman also suggested that one cannot not manage. One cannot not manage ones health, ones chronic illness. If you decide to make choices not to exercise, for example, not to eat well, not to follow health recommendations and so on, in effect, you are making a choice about how you are going to manage your illness. Moving on to slide eight.
Defining self-management. In a general sense, self-management has been broadly defined as learning and practicing the skills necessary to carry on an active and emotionally satisfying life in the face of a chronic condition, that is the definition from Lorig, 1993. I will move on to slide nine.
Self-management and a look at another definition that I think is particularly useful from Corbin and Strauss. Corbin and Strauss suggested that the elements or activities of self-management can be broken down into three areas. We can think of self-management as, first of all, as Self Care, caring for one self in the management of one's condition including medication and treatment management, communicating with physicians and other healthcare providers and caring for oneself through exercise and diet. The second element is maintaining, changing and creating new meaningful behaviors and roles, engaging in life activities, including work and leisure activities, and maintaining the social relationships. In other words, realizing that in the course of the development, the onset of chronic illness and living with the chronic illness, roles and the things that we do in our lives, are meaningful activities and behaviors, these things often change and so helping a person to maintain, create new behaviors and roles is the second element. The third element is coping with the emotions and feelings associated with living with a chronic illness and realizing and developing a new sense of future. We can think of self-management in terms of those three ideas. Moving on to slide 10.
Self-management. This slide presents a number of additional points that I want to talk about, about understanding self-management. The first is that chronic illness does not present a uniform set of problems inviting a uniform response. In other words, many concerns and issues that come up for people who share a diagnosis or who have a chronic illness might be experienced by people with that condition. There are always also unique individual concerns and differences between groups. Self-management therefore is always uniquely and specifically applied at the individual level. It is also important to understand that there is a difference between self-management and patient education. Patient education has a specific meaning, the imparting of illness-specific information and technical skills, so things like teaching a person with diabetes how to use the instruments for detecting blood sugar and things like that. They represent an element of self-management but patient education is a separate idea. Self-management is larger than patient education. The summary is that self-management is a comprehensive and multi dimensional framework. It involves a number of different ideas put together under this umbrella of, Self Care, skill building, incorporating elements of illness treatment, management and relationships with the care and the healthcare providers and also coping emotionally and quality of life. So, it is an umbrella term that we will be talking a bit later about, some of those ideas and how we work with people in incorporating them into our counseling. I am moving on to slide 11.
Adherence defined. We will be moving into the definition of treatment adherence. The term adherence has typically been defined in terms of the degree to which patients or healthcare recipients follow or adhered to treatment recommendations. You can see this in the two definitions there from Haynes and Otsuki et al. The extent to which patients follow the instructions they are given for prescribed treatment. So, following instructions and the degree to which patient behavior coincides with the clinical recommendations of health care providers. Those are examples of the typically seen definitions of adherence. Moving on to slide 12.
Adherence. This is the World Health Organization's definition. You will see it is a little bit broader. The World Health Organization defines adherence as the extent to which a person's behavior, whether that be taking medication, following a diet, executing lifestyle changes corresponds with agreed recommendations from a health provider. Moving on to slide 13.
Adherence. Adherence implies a collaborative decision hopefully based on a collaborative relationship between the patient and the healthcare provider. A relationship where the patient and healthcare provide come to a consensus on the most appropriate treatment options for the patient. Moving on to slide 14.
Adherence. I just wanted to highlight a couple of other terms that are frequently seen and used in the context of this idea of adherence. The first is compliance this is an older term that you still see it. In fact I was reading an article the other day and where the authors used the terms intermittently. They used both adherence and compliance. You still see this word, but it is a word that is not in favor and not so much in use these days and suggests a more passive approach, following advice unquestioningly. Doing what we are told, rather than the more empowering idea of participating in the decision making and participating in the decisions by adhering or, following and participating in treatment. Compliance is an older word and one that we are not using as much anywhere. The new word, the Royal Pharmaceutical Society has introduced in the last decade is concordance, which means agreement and harmony and participation as a decision maker on the part of the patient. A lot of people find that term preferable, as well, concordance. You might see that term as well. Moving on to slide 15.
Adherence. This is a definition that I am working on myself, trying to come up with one that will work from a rehabilitation counseling perspective. I am not entirely pleased with this one yet. Informed participation in a recommended health-related behavior at a level that is sufficient to produce the mutually established and understood intended or optimal benefit. That is my personal definition of adherence. I will move on to slide 16.
Additional definitional points. I will point out a few key ideas that we also need to consider and understand in the context of adherence. The first idea is that adherence is not always a yes or no on or off dichotomy. We often think of it that way, but one can be partly adherent. Adherence can be partly and still lead to the positive or intended effects. For example, the participating in a cardiovascular exercise program 3 days a week instead of a recommended five days a week. It will still lead to positive health and, certainly, is better than no exercise at all, which would be non-adherence. You can be partly adherent. In terms of medications, although the ideal in terms of efficacy of the medication might be 100% compliance, taking the medication exactly as recommended, so, medication's might work if you are 90 or 80% compliant, if you take your medication 80 days out of 100, for example, you still might exceed the recommended dose or administration, you might still achieve the effects of the medication. It really just depends on the medication or the therapy that we are talking about. Adherence is not a dichotomy. If there is no gold standard that define satisfactory or effective or poor or ineffective across all health behaviors. Moving on to slide 17.
Adherence might be considered in terms of a few different ideas. I think of the adherence in terms of rejection or discontinuation of therapy, which would be in line with the dichotomy idea, simply not participating in the treatment. Adjusting the dosage or degree of therapy could also be an adherence issue, one that we are probably familiar with. Frequently patients, clients, consumers that we are working with might run out of money and might not be able to buy the medication needed to make it through the month and, so; they adjust the dosage to two times a week instead of three times, for example. You also see variability at in Management for extra doses, on and off participation, using the medication or participating in the therapy when one thinks of it. The idea is that adherence is not yes or no; it is a more complex idea. The general idea is that the person is participating a treatment or therapy in which they, along with the healthcare provider have made a decision that this is the right treatment and the most effective therapy for them. Moving on to slide 18.
We will look at why this is an issue. This slide is called the scope of non adherents and what we want to look at here is, is adherence really an issue with people with chronic illnesses and disabilities? I did picked one of many available studies to look at this. This is a meta-analysis of over 500 studies that DiMatteo looked at in 2004. She looked at over 500 studies over the course of 50 years and found that 24.8% average non-adherence across treatments. You can see that the range is quite dramatic from 4.6 to 100% non-adherence. You frequently see these very large ranges when you look at these studies. Generally, you see in the area of 50 to 75% as adherence and as DiMatteo found about 75% adherence and 25% non adherence across with the studies that she looked at. Non-adherence rates do differ among conditions, types of intervention and the methods of defining and measuring adherence. I see a question; wouldn't a biologic marker be a measure of compliance? That is an example of a method of measuring adherence. There are many approaches to measuring adherence. I will not go into those today. It was not part of my topic. Certainly biologic markers are among the measures of adherence and compliance. I might come back to that when I am finished. Moving on to slide 19.
I also wanted to look at adherence barriers. As you know most rehabilitation counseling clients, most people that we work with as the rehabilitation counselors will be using at least one medication and will be participating in at least one form of medical or behavioral therapy. Many people, rehabilitation counseling clients and many people in general using medications are not fully informed about the number of issues related to the medication, including the reasons that they are taking the medication, whether they understand the diagnoses, whether they understand what it is that the medication is designed to do for them, positive effects, the side effects of the medication, frequently physicians tend to talk about the side effects and the pharmacist might talk about the side effects. Frequently the side effects are left out or some specific side effects are not talked about. Potential interaction effects of medications with other medications or with other food and drink or with non-prescription treatments. The importance of the dosing and schedule and so on, there are a lot of things that people, in general, do not understand about medications and these issues might be particularly true for minors, people with learning disabilities, people with cognitive disabilities and the elderly. Moving on to slide 20.
Adherence barriers. Looking across research, taking a broad look, I have identified categories of barriers to adherence that have been identified, and one that has most consistently been identified across studies is the issue of economic factors. Financial issues, whether it is simply not having the income, resources to pay for treatment, pay for therapy, but also the related issues of not having the financial resources to pay for transportation to get to treatment, get to the healthcare provider and so on, pay for child care, time off of work related to the treatment and so on. So, economic barriers and cultural factors, usually we are talking about in the context of communication with healthcare providers, whether it is language issues or cultural ideas, differences between the healthcare provider and the patient or client. Somatic factors, we are talking about there is basically the felt symptoms. What we find is when people are experiencing or feeling the symptoms, they are more likely to think of the medication and participate in the treatment. In the absence of symptoms, it is easy to forget and less likely that people will be adhering and this is a particular issue with people with episodic conditions like MS and epilepsy. For example during those periods were no symptoms are being felt, it is easy to forget or choose not to use a medication even though the medication is designed to be taken during those periods and be taken consistently sometimes for years. Then, the complexity of the treatment regimen is also a major issue. What we know is that with more complex treatment regimens, adherence goes down, in the case, for example, the medications for people with HIV/AIDS, frequently we are talking about a very complex regimen involving multiple medications at different times, different schedules of taking the medication and so on and in general, as the complexity goes up, the adherence goes down. Moving on to slide 21.
Adherence and self-management. I just want to indicate, I see a question about findings on the rates of adherence across ethnic lines. I would like to come back and address that one at the end. I do see your question and will come back to that. Now that we have defined the terms, adherence and self-management, I will return for a moment to that question I asked earlier, do rehabilitation counselors have a role in promoting self-management in treatment adherence? Moving into the next few minutes, I will be looking at several reasons that I think we do. I will be addressing this from a few different perspectives but also want to briefly consider the perspective that people might have that rehabilitation counselors do not have such a role. The possibilities that I have come up with there in terms of the counter argument would be that it might be said that we are not involved in prescribing medical treatment, and although many rehabilitation counselors are employed in healthcare settings, the majority are not. We have not had the training or education on self-management and adherence and, I think to a great extent, that is true and I will be talking about that. Finally, there might be other arguments; it may be said that this area of counseling is not within our scope of practice. I am going to be addressing these points and describing the various reasons that I believe that the rehabilitation counselors do have a ethical and professional responsibility to be able and willing to discuss and educate and be a resource about self-management and adherence in the next few minutes. The first perspective we will be looking at is from an ethical perspective. I want to point out that is important to begin with the basic understanding that our goal in this area of counseling is fundamentally, I think, to help our clients make informed, personal decisions. I am aware that there is not possibility for paternalism, for feeling like we are telling people what to do, taking care of people and doing things for people and those sorts of ideas. My belief is that our role in terms of adherence to treatment and in terms of self-management is not to tell people what to do and not the paternal but to promote informed decision making, promote personal health, through promoting access, effective communication and skill building, some of the ideas we will be talking about and promoting successful rehabilitation outcomes.. There are a number of ethical questions and concerns that rehabilitation counselors should consider in this context. We will look at those first of all in the next few slides. So, moving on to slide 22.
Applying the ethical principles in the self-management/adherence context. We start with the principle of beneficence which is a moral obligation to promote good and prevent or remove harm and to promote the welfare, health, and safety of society and individuals in accordance with their values, preferences, life goals, and beliefs that is the definition from Donna Falvo, 2004. In the context of self-management and adherence and thinking about the principle of beneficence, most rehabilitation counseling clients, most people that we will be working with or are concurrently working with, working with at the same time that physicians and other mental and physical health care professionals and are going to be participating in medication or treatment, behavioral h health treatments and so on, the common and generally safe assumption is that the treatment prescribed by the client’s physicians and other healthcare providers is the best thing for the client and we also frequently conclude that adherence to treatment will promote the clients achievement of his/her rehabilitation counseling goals. From the perspective and in the spirit of the principle of beneficence are promoting good, we are promoting good for the client and acting in his/her best interest when we are work with them to address barriers they have to adherence, increasing our own knowledge of treatment so that we can help provide resources that enable our clients to effectively manage their disability and encourage them to continue with practices that maintain their health and well-being. I think, in other words, from a beneficence perspective, we are working to promote the client's good, frequently, when we are promoting adherence and self-management, but can promoting adherence be unethical? The idea here is that it can be. In the spirit of the same principle, there is time that the client makes an informed decision not to follow treatment recommendations. Reasons that I have heard with clients that I have worked with over the years include decisions about the cost, the side effects, the perceived and unwanted personality or social or cognitive or energy changes that the person experiences as a result of the treatment. There might also be cultural or religious or personal reasons that a client make an informed decision not to participate in treatment. When clients are urged to adhere to treatments or treatment goals that are not their own because we believe that adherence will promote a rehabilitation counseling outcome, at the expense of something that the client values more than the counselor has not behaved in the best interest of the client. It might be that we perceive the client to be making the wrong decision, but if we have done what we can to make sure that client is making an informed decision and the client is a competent individual and able to make an effective decision for him or herself, then the ethical thing to do is to respect that decision. So, in that case, it is possible to promote adherence, it could be unethical. Moving on to slide 23.
Applying the ethical principles in the self-management/adherence context and looking at the principle of nonmaleficence first do no harm. This principle involves weighing the probability of harm to the consumer. What is the relationship between nonmaleficence and informed consent? There are many treatments that have significant adverse effects or side-effects or potentially problematic outcomes. There are some very significant effects that a lot of the treatments that people with chronic illnesses are involved in. In working with clients who are making treatment decisions, it is critical, I think, that we assist them to make informed decisions based on their own values and life circumstances to avoid harmful outcomes. Moving on to slide 24.
Applying the ethical principles in the self-management/adherence context. We are looking at the principle of justice which refers to fairness, equal access and equal treatment. I think that this principle speaks, in the present context to working with each client, individually, fairly and recognize that different clients face different barriers and have different values and require different levels of support and advocacy. That is how we can apply that principle in this context. Moving on to slide 25.
The principle of fidelity refers to being honest, loyal and keeping promises, including in the context of confidentiality and informed consent. We will be talking about that in just a minute. I will move on to slide 26.
I am racing through some of these principles, autonomy. I think autonomy has a clear relationship with what we are talking about today. Autonomy refers to the idea and belief that individuals have the right not to make their own decisions about their own course of action. In other words, the right to self-determination. Respect to the client’s autonomy and the right to make his or her own decisions is a critical guide in this context including respecting the right of the individual not to maintain treatment, not to participate in treatment, sometimes. I put the principle of veracity in there meaning truth, honesty and respect, really just as a node to, it looks like the code is being revised right now is going to be including this principle. I wanted to throw it in there in the principals for rehabilitation counseling. Moving on to slide 27.
Applying the ethical principles in the self-management/adherence context, slide 27, talking about informed consent. Informed consent, according to Dreeben, in a book that just came out requires three elements, competence or the capability, capacity to make an informed decision, comprehension which involves having all the necessary information and having the ability to understand it and the liberation or the time and ability to weigh the alternatives and consider the consequences. Here we are talking about the role of the rehabilitation counselors in this context to ensure the consumers have the competence, comprehension and deliberation necessary to make an informed treatment or rehabilitation plan decision and to provide it directly when it is in our scope to provide this information directly or help the client obtain sufficient information to make an informed and considered choice about adherence and self-management. Moving on to slide 28.
On slide 28, applying the ethical principles in the self-management adherence context, the rationale form informed consent is that individuals have the right not to know what they are getting into when they come for counseling. The same idea applies in this context; we all have the right not to know what we are getting into when we become involved in any form of medical treatment, any form of behavioral therapy, any form of treatment. So, basically, from an ethical perspective, we, rehabilitation counselors, have the responsibility to ensure that clients are making informed decisions about treatment. Informed consent supports client freedom, choice and autonomy. Moving on to slide 29.
Are self-management and adherence Rehabilitation Counseling issues? Having explored some of the applications of those ethical issues, I want to go back to this question now and look at it from a professional practice perspective the. Should self-management have a role in our increasingly crowded curriculum, our increasingly complex professional practice? Does it relate to our mission and our training and our counseling professional goals? Moving on to slide 30.
We will look at this from scope of practice perspective. So does adherence and self-management fit into our scope of practice? I suggest that it does. If you look at the scope of practice statement for professional rehabilitation counselor, this is a couple of sentences from that statement and is available at CRCC, you do not see a direct mention of either self-management or adherence within our scope, but if you look at the scope, you will see that the idea that we are talking about when we are talking about self-management and adherence are clearly present in the context of the terms within the scope. Scope talks about assisting persons with disabilities to achieve their personal career and living goals through the application of the counseling process. It talks about a number of things that fit well within the counseling techniques that we will be talking about a little bit later when we talk about how to actually integrate self-management into the rehabilitation counseling process. I argue from a scope of practice perspective although it is not explicitly identified, self-management is a part, or should be a part of what we do. I want to talk about this from an advocacy perspective, moving on to slide 31.
From an advocacy perspective: Chronic illness in America. I will run through some data getting to the point that I want to make in a couple of minutes, suggesting that we have an advocacy responsibility here. In order to introduce this idea; I am going to present some information about chronic illness and disability in America. In 2005, 133 million Americans, almost one in two had one or more chronic health conditions. This number is projected to increase by more than one 1% each year through the year 2030. Between 2000 and 2030, the number of Americans with chronic conditions will increase by 37%, almost 46 million people. Moving on to slide 32.
I think it is important to be aware, particularly as aging is something that we are spending a lot of time talking about in rehabilitation counseling these days, as the prevalence of multiple chronic conditions increases with age. Among people aged 80 and older, 92% have at least one chronic condition. 73%, 3 out of four have two or more chronic conditions. By 2030, 20% of the population will be people aged 65 and older with chronic conditions. Moving on to slide 33.
Chronic illness and age, it is important to be aware that the incident and prevalence of chronic conditions varies among age groups. Although there are some conditions such as diabetes and arthritis and hypertension that are prevalent across age groups, different age groups experience higher rates of some conditions. This slide highlights that. For example among people 65 and older, hypertension and arthritis are particularly prevalent and among people 18 to 64, respiratory disease and chronic mental conditions are also presented. You see hypertension and arthritis, as I said you see some conditions that are across the age range there. Moving on to slide 34.
Is self-management a rehabilitation counseling issue? The data from a number of sources I have collected, suggest that if you are a person with a disability in America you are at risk. Specifically, moving on to slide 35,
You are at risk for lower levels of employment. You are less than half as likely to be employed. 37% of people with disabilities reported being employed part-time in a recent survey compared to 78% of those who do not have disabilities. I am not sure because the data came from a couple of years ago. It has probably changed in the last couple of years, but the general trend is certainly consistent. Moving on to slide 36.
At risk. You are at risk for living in poverty and three times as likely to live in property if you are a person with a disability in America. You are at risk for further chronic illness and disability. You are less likely to have health insurance. If you have less health insurance, if you have less health insurance coverage then you are less likely to use the healthcare system for preventative and diagnostic care and less likely to be participating in health behaviors such as smoking cessation, cardiovascular strengthening and flexibility activities. Moving on to slide 37.
Your increased risk for developing a secondary disability, and I selected here one study from the many that are available that highlights this idea that if you have a disability in America, you are at a higher risk for developing a secondary condition or secondary disability. Moving on to slide 38.
Disability and health. According to the slide, there is not necessarily a relationship between disability and poor health. Having a disability does put you at increased risk, however, for poor health and secondary health conditions. The reason for this is because people with disabilities are statistically much more likely to face economic, social, systemic and environmental barriers to positive health behavior such as nutrition, exercise, health information, access, preventative healthcare, mental healthcare and so on and to adherence to healthcare treatment. The fact is that people who have money, insurance and time find it much easier and have more opportunities to maintain good health. Because you are statistically less likely to have time, money and insurance in this country, to the extent that these economic, social, systemic and so on, to the extent that these attitudinal barriers exist and to the extent that all of these barriers exist and we, as professionals are ethically bound to eliminate them. Then self-management and adherence become advocacy issues, in my opinion. That is another perspective. Moving on to slide 39.
A rehabilitation outcome perspective. This is a graphic representing the idea that although health might not be the direct outcome that we typically think of when we consider rehab counseling outcomes like employment, education, independence, community participation, although it is not typically one that we consider as a rehabilitation counseling outcome, this graph is meant to represent the idea that it is clearly and directly related to all of these rehabilitation counseling outcomes. Moving on to slide 40.
A rehabilitation outcome perspective: Evidence, I wanted to briefly suggest that there is considerable evidence that people who participate in self-management, experience outcomes that promote the achievement of rehabilitation counseling goals. Across numerous studies, self-management program participants have be found to experience decreased pain,, decreased disability, decreased anxiety and decreased healthcare utilization and increased psychological functioning, adherence and the use of cognitive coping techniques. The evidence is clear that there is a relationship between self-management and positive rehabilitation counseling outcomes. Okay, so, moving on to slide 41.
In rehabilitation counseling, from an ethical perspective, from a professional skill perspective, an outcome perspective and advocacy perspective, these issues that we are talking about should be elements of our professional identity, education and professional practice. Moving to slide 42.
Having said that, looking at slide 42, barriers to implementing self-management and adherence, and I recognize that there are several reasons why do face barriers to implementing self-management and adherence. The perception and I think that it is a reality is that this is not always our focus; this is not always what our consumers are seeking, it is not always how we think about our work, it has not been the main focus of our practice or educational preparation. In many cases rehabilitation counseling systems are not well set up for self-management counseling. A number of other issues but I think as we continue to realize the importance and benefits of self-management, as we continue to see these benefits in our research, these barriers and issues will be diminishing over time.
Was not discussed. Comprehensive assessment. Asking the questions. Being/Becoming informed about self-management process and core elements.
So, I want to spend the last few minutes here talking about the approaches to incorporating self-management and adherence in our rehabilitation counseling practice. I am actually going to be skipping slide 43, which was, I put it out of place. I am now skipping slide 43 and moving on to slide 44.Core self-management tasks. Moving into implementing self-management in practice. Lorig and Holman and Sabate have described self-management in terms of five tasks or areas in which rehabilitation counselors can work with their clients to develop self-management skills. The first area, problem-solving, is really about teaching an effective and explicit process for solving problems. A lot of times something we think about as inherent and implicit, we do not think about teaching problem solving, but the idea here is that we do take the time to teach the process of effectively solving problems related to treatment, related to self- management. Teaching the process of defining the problem, generating alternatives, gathering information and then implementing a plan and evaluating the plan after we have implemented it, a step-by-step process that we teach clients, that we work with clients to develop and problem-solving. Moving on to slide 45.
The core tasks, number two, decision making and becoming informed and aware, working with clients to identify the answers to questions that they have about treatment, particularly this is important when we are talking about new treatments or treatment changes. So, again, it is not within our scope, generally, to answer a lot of these questions. Our responsibility as rehabilitation counselors, I believe, is to help clients to find the answer, to engage with healthcare providers that can provide the answers to these questions, help our clients to become, by themselves, more informed and aware so they can make informed decisions about questions like, when is a symptom medically serious?, when do I need to see an a doctor about changes? When should I disclose this treatment? When should I discontinue medication? Is this response that I am having a normal response to medication? Moving on to slide 46.
Core Task number three is how to find and use our resources. Helping a client in a way suited to the individual client to find and use resources. They did a study recently where we looked at how people use and where people find health resources. There was a dramatic distinction between people who use the Internet and people who prefer to speak to people or people who prefer to read, right about the age of 50. People over the age of 50, basically, did not use the Internet to get health information and people under 50 did use the Internet as a primary source of health information. I bring that up just to point out the idea that we really need to understand that people get information in different ways, different things work better for different people. Our role is to help people find information in a way that will work for them. The next task, slide 47.
Core tasks, helping people to form effective relationships with healthcare providers. I think a lot of us can relate to the idea that sometimes we feel very rushed when we are dealing with physicians and healthcare providers in the managed-care environment that we are living in today. It can be difficult to develop effective relationships were we feel we can get our questions answered. From a self-management perspective, the idea here is to help people to develop relationships where they can get their questions answered, where they can contribute and participate in the decision making. This might involve counseling techniques such as teaching people to keep lists of questions, to be prepared with their list when they go to see their physician or healthcare providers, to be assertive, to work on assertiveness, to work on communicating effectively. Role and peer modeling and role playing have been effective techniques in this area. Teaching people how to effectively work with and participate in the healthcare provider relationship. Moving on to slide 48.
The core tasks, the fifth core task is developing skills in taking action. Again, this is another process that we do not learn in school, that we do not necessarily think about ourselves but can be learned and taught in the counseling relationship and basically involves a conscious effort, a conscious process of making a plan about health treatment and about self-management and making an effective plan that has the characteristics of being short-term, goal oriented, accomplished and measurable, making an effective plan, assessing the person's confidence and capacity to participate in the plan and then taking action. Those are the steps described by Lorig and Holman. Moving on to slide 49.
Self management. Effective self management involves a multi dimensional approach. Each dimension may present specific challenges to the individual. Moving on to slide 50.
Self-management. Examples of the elements or dimensions of self-management include understanding and staying up-to-date on information about the complex condition, emerging treatment options, adhering to treatments that might be expensive, might require self injection, might have adverse effects or significant side effects, participating in treatment decisions and communicating effectively with physicians and engaging in behaviors to maintain physical and emotional health. Moving on to slide 51.
Self-management. Rehabilitation Counselors can promote self management and assist clients to overcome challenges by understanding these different elements and thinking about self-management as a multi dimensional process, and gaining an understanding of the client’s personal experience with barriers to self-management an understanding those barriers at the individual level. Moving on to slide 52.
Assessment as Entre. I want to point out here in the next couple of slides that a helpful way of introducing self-management into the rehabilitation counseling process and giving client’s permission to pursue this process with you, in other words, introducing the idea that we can provide information, that we can provide resources, is to use an assessment instrument. One instrument that I will present here is by way of example; there are many brief self management instruments available, both general and condition-specific instruments. This is the Multiple Sclerosis self-management scale that Michael Frain and I developed and published in 2007. You can see that it is a multi dimensional scale and has elements of treatment adherence, has elements of the care provider-patient relationship, emotional health and social support, health and symptom awareness, MS knowledge and information, health maintenance and behavior and communication about symptoms and changes. This is an example of a specific, a condition specific self-management scale. Moving on to slide 53.
I am on slide 53 now, the scale for assessing MS self-management. I am just going to identify the seven factors here. I am going to skip ahead through these and not read through these. I am being aware of the time. Moving on to slide 54.
MS Self management scale. Continues those dimensions there. I am going to skip once more to slide 55.
This is an example of some of the items. This is a 40-item scale. It can be completed fairly quickly. It is based on a rating scale. I take my medication exactly the way my doctor prescribes, taking my medication is a routine part of my daily activities like brushing my teeth. Those are examples of items related to adherence. I have a good understanding of why I take my medications and what they are supposed to do. I am able to plan things so that I am able to take my medication when I should. I am confident I need to take my medication to be healthy and so on. There are a number of questions. I have insurance that pays for my medication is another example. Questions that help the individual and counselor working together to identify both barriers and the things that are going well in the number of dimensions of self-management. Moving on to slide 56.
Improving adherence. In the area of the counseling of treatment adherence, in the last few minutes, finishing up here we are going to briefly discuss ways to insure informed decision making about adherence. The first one is the idea of examining professional assumptions, examining our own assumptions about adherence. I think, we frequently assume, for example that if a medication or treatment exists for a condition, then people will use it. We also might assume that people will follow the instructions and recommendations that they have been given. I know from personal experience that the instructions are frequently unclear, that I do not always take the antibiotics until my regimen has been completed, for example. Personally, we might not be the best adherence to our own treatment but we do tend to assume, make assumptions about our client's adherence. We might frequent assume that people have the resources and the access that they need to maintain adherence and so on. The idea is that we need to think about our own assumptions and make sure that they are accurate and in line with the individual with whom we are working. The second thing is that we need to understand the motivations and adherence predictors, moving to slide 57.
Researchers have looked at a number of models about predicting whether a person is going to initiate a behavior. The point of this slide, I just wanted to point out is that you have probably heard about models like the trans-theoretical model, behavioral change and health beliefs model, for example. What we have found is that these models predict initiation, they predict a person starting a behavior but they do not predict maintenance overtime. What we have found is that over time, the predictors of maintenance, the motivations change over time and it is important that we understand that. Moving on to slide 58.
So, slide 58, variables directly or indirectly influencing adherence. The primary, the one that has most frequently been identified that thing that comes up most often is, again, the availability of economic and social resources. This is the most frequently studied and, unfortunately, it is frequently the one that we have the least opportunity to change. The primary issue on adherence is economics, finances, not having the money or the resources to participate in treatment. Understanding and expectations, if expectations are accurate and informed that would result from having participation with the treatment decisions with the health provider and a good understanding of what to expect, then adherence is high. If people expect something and do not get it, then adherence tends to be lower. That is the case with a lot of the medications for chronic conditions like arthritis, MS and other disease-modifying treatments where the effect are long term and not necessarily experienced immediately. With medications like that, the adherence tends to be lower. Another issue is social acceptability; we have to consider whether the treatment will be acceptable to the client within the family, within the individual's culture, within the world that the client lives in. Moving on to slide 59.
Variables directly or indirectly influencing adherence. Socioeconomic status, cognitive functioning, motivation and expectations all effect adherence, whether the consumer recognize the condition as a situation which they are motivated to change. A lot of times it is not the case that the condition that the symptoms are recognized as something that the individual wants to treat. And then duration from diagnosis, how long the treatment lasts effects adherence. Generally, the longer the treatment, the poorer the adherence overtime. Moving on to slide 60.
Improving adherence. Counselor/Consumer Communication. We will be talking here about ensuring-sorry; I am moving on to slide 61 now.
Improving adherence. Ensuring informed decision making; ensuring that clients have input on the feasibility and the acceptability of a treatment with the healthcare provider who is recommending treatment; ensuring that the instructions are clear and that the client understands and feels comfortable asking questions about the treatment with the healthcare provider; ensuring that the client and healthcare provider have a shared understanding of the goal of the treatment, the schedule and procedure. In otherwise the client knows how to do this thing, whether it be giving a self injection or testing a blood sugar level and so on. What is an effective level of adherence and what are the potential barriers? Moving on to slide 62.
Improving adherence. Questions that we can help people to understand the answers to, either directly or more often by providing resources and involving healthcare providers. What is the cost and what will be covered by insurance? What adverse affects might be expected? What if I have questions like we looked at before? One that we can talk about and should be able to help address is, when should I disclosed this treatment in the context of employment, for example? Should I tell an employer when I am going foredeck an interview that I am taking this medication? If so, how should I do that? Moving on to slide 63.
Improving adherence. How to find and use resources. What are the resources available and how do I find them? Again the idea there is how do I make sure the client is getting information in a way that makes sense to them, whether it be from the physician, the internet, how can we make sure the clients are getting accurate information and understanding it? Moving on to slide 64.
Adherence. I just wanted to point that out that the greatest decline in adherence with most medications occurs early, usually in the first days to weeks within the course of therapy and there are a number of reasons this occurs. It is important to recognize this dynamic. Early and frequent follow-up has been found to be an important factor in adherence therapy. Okay, moving to slide 65.
I think this is the last slide before we get to questions. Implications for rehabilitation counseling. Working with our clients and encouraging effective self management is a process that empowers our clients in a way that has a lifelong beneficial effect. We need to understand the motivations for barriers to adherence at the individual level and realize that these may change overtime. The motivations and barriers will change over time. We need to think about that and plan for that as we work with our clients. Based on the individual client’s barriers, we have an ethical and professional responsibility to explore resources for information and financial assistance, and promote effective communication with healthcare providers. Moving to slide 66.
Dr. Malachy Bishop: I am sorry, Lucy, I think I heard you speaking but you cut out. I think you were reading the question or asking me a question. Can you repeat that please?
Question: Yes, the question is, are there any differences in reference to adherence across ethnic lines?
Dr. Malachy Bishop: The answer is, yes, there are studies looking at that question. I am hesitant to make any general statements, speaking generally about self-management or adherence. There is a lot of research looking at that. I encourage people who are interested to take a look. I do not want to make general statements but certainly that is an area that has been looked into.
Question: Thank you. We have another question. Where should the counselors draw the line drawn between the client’s autonomy and self-management?
Dr. Malachy Bishop: I think the question was what is the line between autonomy and self-management? What I am trying to suggest is that autonomy, okay that is the question. Autonomy is the key. Basically promoting self-management, promoting lifelong benefits through effective management is a process of teaching people to manage for themselves or providing people with resources. I think I saw someone else making a reference that we can refer people to self management. That is certainly true. There are a lot of agencies and associations and hospitals and settings that provide self-management training. We can make those referrals and we can get people involved in self management counseling. Basically, everything we do, I think, is based on autonomy and doing thing, presenting information, providing resources to allow the client to make his/her own decisions about participation, about treatment participation, about self-management and so on.
Question: Thank you. Another question is, if the client is not competent to provide informed consent, are they too severe for rehabilitation in this case, vocational rehabilitation?
Dr. Malachy Bishop: It certainly has not been my experience. We might be working with clients who have been judged not competent to make their own decision. Typically they have people in their lives who are working with them to help them make decisions, guardians and family members and so on. I would not say that anyone is too severe for rehabilitation counseling. Hopefully, those same people in their lives that are helping them make decisions about their lives, hopefully, not always making decisions for them but helping them to make decisions, would also be involved in decisions about treatment adherence and HealthCare.
Question: Thank you. We had another question in reference to something that was mentioned before related to the economic situation. In the particular case of budget cuts, how does this tie into client adherence to services?
Dr. Malachy Bishop: Okay, if I understand the question, budget cuts and rehabilitation counseling services, is how I am understanding that, I am not sure that there is a relationship. We are talking about providing information in the context of the rehabilitation counseling process, as I see it. We are not talking about providing extra services, extra counseling. The way I see it, this is, self-management is something that we do and can talk about in the process of our work with clients, in intake, in plan development, in job development and so on. So, I am not sure I see a relationship in terms of the rehabilitation counseling budget. Hopefully, that answers the question.
Question: I think it does. Thank you. I do not see any other questions. Okay, I see another one. Could just say that promoting self-management is equal or at least similar to teaching, counseling the clients to be their own best advocate?
Dr. Malachy Bishop: Elizabeth, I think you said it better than I. That is exactly what I am trying to say, yes, promoting self management is exactly that. It is a little bit more than that, I will not get into the specifics but the - main idea is that, yes, we teach people to be and we help people to become their own best advocate, their own best advocate in terms of working with the healthcare providers, taking care of themselves, participating in healthy behavior, and gaining access to insurance and healthcare and so on. You are exactly right.
Question: Okay, here is another one. Should it be unethical to encourage a client to change doctors if a counselor noticed that the current form of treatment is not working and the doctor refuses to change the method for it?
Dr. Malachy Bishop: That is an interesting question. Is it unethical to encourage a client to change doctors if the counselor notices that the current form of treatment is not working and the doctor refuses to change the method of treatment? That is an excellent question. If the client notices that the, basically, I think I would say this, it is important that we promote communication in this context before we encourage anything. We want to make sure the information we are receiving from the client and from the doctor is accurate. That is the first thing I would say. From my own experience, working with clients, if a client has felt that they are not able to communicate with the physician, that the treatment that they are using is not working and they feel like the physician is not listening to them, I have recommended that the client pursue another physician, if that is an option to them. I do not see anything unethical about that. It is, again, the way we need to think about that is promoting the client's own informed decision, looking at the pros and cons and helping the client to make an informed decision. If the client, after talking about it and looking at all of the alternatives decides that they want to change the healthcare provider, then I think we have done our work, ethically.
Lucy Wong Hernandez: Thank you. There might be some other questions that we need to postpone for later and send everyone the answers for them. In the interest of time, right now, I would like to thank Dr. Bishop for his presentation on this educational topic that provides us with a refreshing concept of, Ethical and Professional Issues for Rehabilitation Counselors Related to Self-Management and Adherence to Treatment. It has been a wonderful, wonderful and educational presentation. We understand that rehabilitation counselors are increasingly working with clients with chronic conditions involving complex treatment and this treatment frequently interacts with the rehabilitation counseling process, so, this is very important for the profession. I also want to thank all of the participants for their questions and their active participation.
We will get back to you with all of those answers and to remind you that a transcript of this session along with all of the handout materials will be posted and available on the TACE website within two weeks of the session at TACEsoutheast.org. Also, please remember to complete your evaluation of today's session. Your feedback is very important to our continued planning so that we might address your specific needs and concerns. The link for the evaluation form is posted in the chat room so that you can go ahead and click on the site straight from the chat area and fill out the evaluation form when you are done with the session. This session has been approved for .1 CEUs and 1.5 CRCC credits. Please refer to the site coordinator instructions for additional information. Also know that in order to be eligible for CRCC credits you must reside within the eight southeast states served by the TACE Center in Region IV. If you are from outside of the region you can still apply for the CEU credits but not for CRC. It will take approximately two weeks to get your notification for the CRCC. And remember if your questions were not answered, at any time you can send us your questions or send us an e-mail at tacesoutheast@law.syr.edu. We will be very happy to answer your questions.
I would like to give you some information about the upcoming seminars and webinars for the month of June. We have in the month of June a Blackboard seminar session, on the In-depth Training on Developing Employer Relationships using the EOS Protocol. This BlackBoard seminar will run from June 8 through June 26. We also have other interesting webinars coming up, on is Rehabilitation Services for Individuals with Visual Impairments and Blindness: An Introduction to Comprehensive Assessment. Part one will be on June 10 and part two will be on June 24both from 11:00 a.m. to 12:30. And also Individualized Plan for Employment: Counselor/Consumer Alliance for Developing an Effective IPE. This webinar will be held on June 18 from 1:00 to 3:00 pm. So do not miss these great training opportunities. This concludes today's session. I hope to see you back during the future TACE Center webinars. Thank you so much for your participation and goodbye for now.
[Event concluded May 27, 2009]