- Email: [email protected]
Applying the transtheoretical and Harm Reduction Models to patient education in clinical practice settings
Maibach, E., & Murphy, D. (1995). Self-efficacy in health promotion research and practice: Conceptualization and measurement. Health Education Research,10(1), 37-50. Miller, W., & Rollnick, S. (1991). Motivational interviewing: Preparingpeople to changeaddictive behavior.New York: Guilford Press. Prochaska, J. (1991). Assessing how people change. Cancer,67, 805-807. Prochaska, J., Redding, C., Harlow, L., Rossi, J., & Velicer, W. (1994). The transtheoretical model of change and HIV prevention: A review. Health Education Quarterly, 21,471 - 486. Rural Center for the Study and Promotion of HIV/STD Prevention. (1995). Behavior change models for reducing HW/STD risk [Fact Sheet, #3]. Bloomington, IN: Author. Stiffman, A., Dore, E, Cunningham, R., & Earls, E (1995). Person and environment in HIV risk behavior change between adolescence and young adulthood. Health Education Quarterly, 22, 211-226. Stockwell, T. (1992). Models of change, heavenly bodies and weltanschauuags. British Journal of Addiction, 87, 830-831. Strang, J. (1992). Harm reduction for drug users: Exploring the dimensions of harm, their measurement, and strategies for reductions. AIDS & Public PolicyJournal, 7, 145-152. Strecher, V., Seijts, G., Kok, G., Latham, G., Glasgow, R., DeVellis, B., Meertens, R., & Bulger, D. (1995). Goal setting as a strategy for health behavior change. Health Education Quarterly,22, 190-200. Stryker, J., Coates, T., DeCarlo, P., Haynes-Sanstad, K., Shriver, M., & Makadon, H. (1995). Prevention of HIV infection: Looking back, looking ahead, lAMA, 273, 1143-1148.
JANAC
Vol. 7, Suppl. 1,1996
Applying the Transtheoretical and Harm Reduction Models to Patient Education in Clinical Practice Settings Editor's Note: Nurses who work in a variety of clinical settings were asked to respond to this article and to evaluate how the principles of the stages of change and harm reduction could be used for patient education with their particular client populations. We received these responses. Substance Abuse Treatment by Brianne Fitzgerald,
MPH, RN, Health Services Consultant, Educator, and Manager, Dorchester, MA. The Transtheoretical and H a r m Reduction Models give providers tools that can help make sense out of substance abuse, a frustrating and difficult disease process. And they can do this by helping providers move to higher levels of functioning as well as b y helping clients learn to change behaviors. The Transtheoretical Model helps us to focus our attention and interventions. Its practiced use hones our ability to make educated assessments on how to encourage change by people at risk. But change does not come easy for either the provider or the client. Do you become excited with hopeful anticipation when you see a sick and suffering addict come into your practice? If you do, you are unusual. H o w can you move from fear, disgust, dread, and frustration w h e n you see such clients (precontemplation) to a point of detachment, hope and energy when they present (maintenance)? The first step for the nurse--and the key to change-is awareness and identification of your own feelings. If you are not aware that there are addicted p e o p l e in y o u r practice, or if you believe that for the most part they are a lost cause and there is nothing you can do, then you are in precontemplation. Little that is taught or suggested to you will change the way you think. My strategy as a colleague or a teacher, therefore, is to work with y o u in a respectful manner that maintains your dignity. Yet I must also confront y o u w h e n y o u say things that disrespect m y philosophy of care or dehumanize the person with 33
A p p l y i n g the Transtheoretical and Harm Reduction M o d e l s to Patient Education in Clinical Practice Settings
addictive disease. I must name what I see in a nonemotional way and then leave it alone. I must use my actions to raise y o u r awareness of alternative behaviors that demonstrate effective and compassionate care. I cannot talk you into seeing things the way I would like you to see them, but I can show you how to make a difference. Contemplation occurs when you become aware that something is amiss in your practice and begin to question the way you are doing business. During this time you begin to realize what it is that you might need to do to regain some balance and sense of satisfaction with your work. You may wonder why "these people" act in such an ornery way. You begin to ask questions. This questioning takes courage. Ideally, some of your questions will be directed toward the population you are trying to understand. Something as simple as asking "What is your day like?" can open new avenues for exploration. Action is practicing skills based on your new information, gathering more information, and being ever attentive to your inner feelings. Maintenance is some level of comfort in your new role, comfort in knowing that the only person you can change is yourself. You can change the w a y y o u view situations; y o u can change y o u r expectations; and you can change your own negative, self- defeating behaviors and thought processes. You cannot change the other person. You can, however, pass on information, skills, resources, and options that m ay improve the client's decision- making powers. If you are able to grow and change, you can demonstrate through your actions that growth and change are possible. Your experience will give you hope, and others may receive hope through your actions. You will have increased your control over the situations (how addicts make you feel) that have left you feeling inadequate. Relapse is not always a part of the process, but more than likely there will be times when you will get angry and hurt because you have been "conned" by a patient or have lost a client to follow up. You may actually ask yourself, "Does any of this matter? Can I really make a difference?" Honor and acknowledge these feelings; they will pass. And there will be new clients who can be assisted, against all odds, to make meaningful changes in their lives.
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I'd like to take this opportunity to share my own story about harm reduction. My background is in substance abuse treatment; recovery, abstinence, and the Twelve Steps were the foundations of my practice. Then came HW/AIDS and the world as I had known it was turned upside down. The journey that I have traveled to accept, and to embrace, harm reduction has been an exercise in humility. In 1987 I was appalled with the concept of harm reduction. "It is a license to use. We might as well give them the dope to shoot up with." I was proud to d e b a t e the C o m m i s s i o n e r of Publ i c H e a l t h in Massachusetts, stating ever so publicly that drug users were being given inferior services. Harm reduction was like offering a Band-Aid for a hemorrhaging wound. I was dramatic, I was angI3~ and I was scared. I was in the stage of precontemplation for a change to harm reduction. It was not an option that made any sense to me or to most of my colleagues. Time passed, however, and HIV/AIDS did not go away, drug addicts kept recycling through our treatment facilities, and we began to see more and more patients becoming HIV positive. Prisons were built; treatment facilities were closed; and nothing seemed to be working. A question commonly asked of those in recovery is, "What was the seminal event that got you on the road to recovery?" Sometimes there is a unique response, but more often than not there is no simple explanation. It is the process. And so it was as I worked m y way through the stages of contemplation and preparation and began to consider harm reduction as a viable alternative. The process required time, exposure to a growing b o d y of information, and interaction with addicted clients. H ow ever, the ultimate experience was visiting the Netherlands and seeing an array of substance abuse treatment options that ran the gamut from needle and syringe exchanges to vocational and housing programs for individuals and families w h o wanted to change their lives. Talking with addicts in the Netherlands helped me to begin to honor the philosophy that members of a community are their own best resources for affecting change within their own communities.
JANAC Vol.7, Suppl.1,1996
I n o w use (action and maintenance) harm reduction as a viable tool in m y practice in the field of substance abuse treatment. Harm reduction strategies that I would ask you to consider include classes for users in detoxification centers or methadone maintenance programs that teach ways to monitor drug intake, to assess the triggers that stimulate use, and to affirm situations where control over the urge to inject are mastered. Consider positive group support, or acknowledging w h e n a client comes forward to discuss a day of decreased use, or assisting folks who are leaving detox with the express intention to get high by giving them clean works, or by acknowledging the reality of this disease, or by not shaming patients any more that they have already been shamed by saying such things as "You'll be back in detox before you know it." A m o r e p o s i t i v e i n t e r v e n t i o n w o u l d be to say, "We're here for you if you ever need us." The focus for change historically has been on the individual, often in a shame-based way. The community (drug users and clinics) needs to identify b o t h the need and the desire to change. The c o m m u n i t y also needs to identify its o w n spectrum of prevention and intervention programs that should include access to needles, syringes and condoms as well as to education, treatment and counseling. Harm reduction recognizes and addresses the reasons for the dismal recovery rate in substance abuse: primarily, the dualistic approach to treatment where a client is either in r e c o v e r y or in relapse, ignoring the area in between; but also the belief commonly held by providers that an active user has no control over any i m p o r t a n t aspect of her or his life. The H a r m Reduction M o d e l offers another way to consider this complex process of addiction by considering a wider array of options than is currently offered. The transtheoretical and harm reduction models help providers and patients alike to recognize and accept opportunities for change.
JANAC Vol.7, Suppl. 1,1996
Working With Families by Barbara Aranda-Naranjo, MSN, RN, Assistant Director, South Texas AIDS Center for Infants and Their Families, San Antonio, TX. The transtheorefical model and harm reduction model can both be used to work with families living with HIV infection. These models allow the practitioner to assess the person living with HIV infection within a holistic, m u l t i d i m e n s i o n a l f r a m e w o r k . Because p e o p l e living with H W infection are experiencing more than one set of h e a l t h - r e l a t e d imbalances, nurses w o r k i n g with this aggregate must be ready to assess and intervene using behavior change models that are more process-oriented than outcome-oriented. The Transtheoretical and H a r m Reduction models seem to fit that requirement. I have worked with families living with H W disease in South Texas for the past seven years, and it is clear that the majority of the clients do not seek health care for H W as a first priority. They are experiencing an array of health and h u m a n service problems such as inadequate housing, e m p l o y m e n t problems, decreased access to food, and family violence. In assessing and asking clients about their needs and goals, it is evident that a process for c h a n g e l e a d i n g t o w a r d a m o r e b a l a n c e d state of health care is needed. I have learned a lot as a clinician who works with these families. They have taught me to ask three questions before I attempt to initiate care. These questions help me to focus on the individual, the family and their social and cultural environments: 1) What is the experience of living with HW/AIDS for this family? Answering this question will require a number of discussions with the client. What is learned helps to contextualize the environment. 2) Within the described personal e x p e r i e n c e , w h a t b e h a v i o r c h a n g e s , if any, are this client/family willing to make? and 3) What cul0.rral and social v a l u e s d o I b r i n g to the d i s c u s s i o n w i t h the client/family and how do my values affect the process of change and the w a y in which intervention models are used? Once these questions are addressed, I can m o v e into the assessment and intervention phases of care. The Transtheoretical Model can be an effective means of facilitating a process of change in families. The five stages described in the m o d e l allow the n u r s e to be 35
Applying the Transtheoretical and Harm Reduction Models to Patient Education in Clinical Practice Settings
flexible in assessing and directing interventions for a wide range of identified needs. Some family- specific issues need to be discussed, however. A major problem is that the model appears to be individual, as opposed to group, focused. This is not an overwhelming problem, but some modifications need to be made when working with family groups, especially when more than one family member is infected. For example, the developmental level of all of the children, infected or not, will need to be assessed and taken into consideration when helping the family develop plans. In addition, the family as a unit would generally need to be consulted prior to the application of this model. It is also important to assess the readiness of the infected person and the family as a trait when initiating interventions based on this model. Timing for behavior change is critical, especially when working with clients in crisis, and families living with HIV disease experience frequent crises. Another confounding factor that is important to consider is that family members will not necessarily move through these stages at the same pace, and some may never achieve a willingness to consider change. This can create a "messy" state of affairs within the family, which the nurse may be asked to consider. Many women we encounter in our clinic have multiple family members who are infected and affected by HIM. They experience an initial shock at finding out that members of their immediate families are HIV infected, and they have a fear of community disclosure about their family's H1V status. These women will tend to stay in precontemplation until these issues are addressed to their satisfaction. At this point, many nurses and physicians make the mistake of pushing the client to decide on multiple interventions. A slower, accepting process may be a better approach to helping these women deal with their families' issues. In contemplation, family members begin to think of their behaviors as changeable and this leads to preparation for change. Action and maintenance require continuous assessment, client feedback, and supportive nursing care. The Transtheoretical Model allows nurses in HIV care to systematically apply, assess, and engage clients/fami36
lies in their own journey of behavior change processes. A critical factor in using this model is to establish mutual trust and respect with the client/family. An important tactic in this process is to explain the model to family members in ways they can understand. Clients have a right to be informed of the assessment tools and intervention models that practitioners use in assisting them to meet their needs. The Harm Reduction Model is an excellent second model to use with people living with HIV because it allows for a continuum of options for the client. This continuum is very important in working with people who have past and current histories of illegal behaviors. The continuum allows clients to see behaviors in relative rather than absolute terms, providing them with a wider range of personal choices. The harm reduction approach allows clients to choose between riskier/less healthy and safer/more healthy behaviors, empowering them to take charge of their health. The two models can be very useful to nurses and people living with HIV/AIDS. I work with family members who are primarily of Mexican-American descent. In our clinic, it is necessary to translate the models into Spanish. This increases the understanding of these processes for nurses as well as clients. In addition, a client-provider discussion of what concepts such as "self-efficacy" and "holistic" mean assists our clients to understand why nurses want to use these models. If nothing else, these models provide nurses with new and more realistic ways of looking at behavior change. The models are potentially useful for working with family groups as long as their holistic and flexible attributes are implemented and as long as the nurse maintains the familyas-client centered focus.
JANAC Vol.7, Suppl. 1,1996
Adolescent Interventions by Richard S. Ferri, Phi), RN,
ANP, HIV/AIDS Nurse Practitioner, Medicenter Five, Inc., Harwich, MA. Adolescents are generally overlooked and under-represented in the HIV/AIDS pandemic. The actual number of reported adolescents with HIV infection is relatively small. However, one out of every five cases of AIDS is diagnosed in the 20-to-29 age group. Given the long incubation period prior to symptom development and lack of adequate testing options for adolescents, it is clear that many young adults become infected as teenagers. Adolescents have developmental and age-specific factors that place them at increased risk for contracting HIV disease. Developmentally, adolescents live in the "here and now" and are present focused without regard for future consequences. Teenage bravado, described as a sense of invulnerability, is another major developmental issue that increases the risk-taking behavior of teens. Adolescents do not perceive themselves at risk for harm or acquiring a disease. For example, look at Jeff, a 22year-old client who has been living with AIDS for about four years. Jeff spends most of his time educating teens on HIV disease prevention. He has done numerous programs, interviews, and articles. He knows his facts and is a very impressive speaker. However, not until I diagnosed him with viral meningitis and admitted him to the hospital did it become "real" to him that he actually had AIDS. This was an epiphany for both of us. Specific adolescent risk factors include hemophilia, gay/lesbian/bisexual identify formation ("coming out"), non-consensual sexual activity, economically coerced sexual behaviors ("survival sex"), recreational sexual activity ("comfort sex"), and substance misuse. Gay, lesbian, bisexual, and questioning youth do not find the popular public health messages, such as abstinence until marriage, relevant. These heterosexist messages further isolate adolescents and do not address their needs for meaningful primary prevention messages. Primary prevention strategies need to be multidimensional and targeted to the adolescent's developmental needs and issues. Behavioral change for teens needs to be harm reductive in nature. Demanding complete JANAC Vol.7, Suppl.1,1996
adherence to numerous rules is counterproductive and actually may increase infection rates. There are some basic principles that should be incorporated into practice to assist behavioral change in adolescents. These principles include: 9 Adolescents must believe they are personally at risk. 9 Multiple options for behavioral change are essential. Offering only one option for prevention will not be effective. Abstinence-only curricula, for instance, do not address the needs of the already sexually active teen. 9 Positive peer pressure is very effective. Peer norms have a major influence on adolescent behavior. 9 Skills building workshops are necessary to assist the adolescent with negotiation skills and the ability to resist negative peer pressure. 9 Adolescents who believe in their ability to carry out behavioral change (self-efficacy) will have lower levels of risk behavior. 9 Behavior and beliefs that are adolescent centered must be valued and respected. 9 Cultural identity inclusion will assist in enhancing risk eduction skills and behaviors. 9 Heterosexuality should not be presumed to be the norm of the group. Homosexual and bisexual information should be included in a comprehensive manner, not as a separate item. Prevention strategies that are effective in the adolescent community are those that are adolescent centered and targeted to the individual. This goal is hampered by three major barriers to primary prevention education: adolescent perceptions that they are impervious to harm; the prolonged nature of H1V disease, which spares adolescents from ha~ng to watch peers die; and prevention curricula that are often a d u l t - c e n t e r e d in their approaches. Additionall~ youth who are ga~ lesbian, or bisexual are often dismissed as unimportant or even nonexistent. Attempts to help adolescents change their sexual activities need to be personalized regardless of the prevention strategy that is advocated--abstinence,
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A p p l y i n g the Transtheoretical and H a r m R e d u c t i o n M o d e l s to P a t i e n t E d u c a t i o n in C l i n i c a l Practice S e t t i n g s
monogamy, or explicit safer sex instructions. Denial must be overcome to help the adolescent understand that infection with HIV is a potential and ever present possibility Generally, the adolescent community is divided into either school-based or street-based groups. For the schoolbased adolescent, a peer leadership model is effective.Teens educated on the issues of H1V infection and transmission who can talk to their peers provide a mechanism that makes the information "real" to other teens. Adolescents value and personalize the information provided by a peer more so than from an adult. Many school systems have struggled with the issue of condom availability as a prevention strategy. The arguments, pro and con have been hotly debated. There is a generalized fear that condom availability programs will increase sexual activity of students and, therefore, lead to higher rates of infection. There is, however, little evidence to support this assumption. The issues and problems encountered by runaway, homeless, and "throwaway" adolescents are numerous and complicated. Implementing primary prevention programs in this environment can be daunting, but not impossible. Exceptional programs for street youth work because they examine the needs and lifestyles of street adolescents in their communities and develop interventions specific to the needs of those c o m m u n i t i e s . Generally, life skill development and improving selfesteem are the core issues that affect disenfranchised youth living on the street or in shelters. Developing effective primary prevention interventions that are directed to the multiple sub-populations of the adolescent community is critical to the public health. AIDS is the leading cause of death of all people ages 25 to 44. The need for nurses to develop effective strategies is clear. Nurses need to develop programs and interventions that address the issues faced by the general adolescent community and its specific subgroups such as runaway/"throwaway" youth, gay male youth, drug users, and adolescent sex workers. Adolescents in our society today carry virtually no political clout and d e p e n d largely on a d u l t society to c h a m p i o n their issues. Adolescents need nurses and the profession of nursing to advocate, educate, and provide care.
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Working With HIV-Infected Women by Risa Denenberg, MSN, RN, Family Nurse Practitioner, Consultant, and Health Writer, New York, NY. Bradley-Springer provides a persuasive description of two theories regarding behavior change. Further, she presents a pragmatic adaptation of these theories to nursing practice. But does this approach work with women in clinical settings? Are we equipped to measure the success or failure of our practice? My answer to these challenging questions is: It depends upon how we conceptualize success. Harm reduction is both a philosophy and a practice. As a practice, it is a set of strategies and tactics that encourages individuals to reduce the harm done to themselves by their behaviors. As a philosophy, it is still in the formative stages: those who apply its principles in working with clients are on the frontline of determining its application as a practice. Harm ~luction, at its core, is a philosophy of beneficence. It implies that, as a society, we wish to reduce the harm experienced by one of our members, even if it is caused by his/her own behavior. Unfortunately, the political mood increasingly creates a climate in which it is acceptable to blame people for their problems and to withhold, punish, and preach in response. Harm reduction shuns the authoritarian model in which professionals decide what is best and expect clients to do what they are told. By changing the process of working with clients, providers often experience more success and connection. Thus, harm reduction as a practice that embraces the transtheoretical model of change offers the opporhmity to revitalize the way in which professionals conduct relationships with clients. Sounds good, doesn't it? Think for a moment about my client, Delores, who is 26 years old, HIV positive, and presently struggling with her long-standing habit of intermittent alcoholic binges. Delores has three children, all in the custody of her mother-in-law. I know Delores well and, despite her history, have assessed that she has m a n y strengths as well as weaknesses. Today she tells me she has a new boyfriend and that they are "real s e r i o u s . . . even thinking about having a baby." Can I use the transtheoreticalmodel with her? Even if my answer is yes, are my colleagues prepared to support my practice?
JANAC Vol.7, Suppl.1,1996
The reality is, not all professionals are prepared to embrace this philosophy of practice. Even if nursing staff in a clinical setting use the stages of change in patient teaching, other professionals (e.g., medical staff, social workers) may continue to rely on other, more authoritarian models. Furthermore, others may be uncomfortable with the idea that we are using a "harm reduction" model with "their" clients. First, I would ask the question, "will an authoritarian model work?" This is by no means a rhetorical question. From the point of view of bringing several disciplines together in our strategies, I would consider the questions, "Will Delores do what I think she should do?" and "Do I feel certain that I know what is best for her?" In staffing groups that I have w o r k e d with, almost everyone would agree that alcohol binging is not a good idea. But "should" she have a baby? I could argue eloquently that families affected by HIV have the same hopes and dreams for their lives as everyone else. When facing a shortened life span, we naturally begin to think of how we will be remembered. This is the spiritual dimension of procreation, creating a legacy. But this is merely my point of view. What do my colleagues think? Actually, Delores is considered to be a "doctor shopper." By this I mean that she has seen almost all the medical providers in the clinic at least once. Delores was labeled "noncompliant" because she refused to take medication for her HIV infection and f~quently missed appointments. Her problem list included the label "alcoholic." In reviewing the chart, it is clear that Delores had not followed up on repeated suggestions that she enter an alcohol treatment program. Surprisingly, almost all the professionals that knew Delores liked her and really wanted to help her. Naturally, these professionals felt very frustrated. On the other hand, Delores had been consistent in keeping appointments with me for about eight months. I had assessed that she was not ready to change her beliefs about HIV treatment (precontemplafive stage), was ambivalent about her drinking (contemplative stage), and was determined to stop smoking (preparation stage). Thus, I supported her goal by proJANAC Vol.7, Suppl. 1,1996
viding information, empathy, and a referral for acupuncture. She quit smoking two months ago. My criterion for success is simple: I judge it a huge success that we have maintained a relationship for eight months. Working to help my client articulate her own goals and supporting those goals resulted in her success at smoking cessation. And this success can be counted on for increased selfefficacy in the future. This concrete example of the application of these theoretical models was well-received at a professional case conference. Still, when I raised the issue of Delores' desire to become pregnant, my colleagues were hesitant to support her goal. I pointed out the obvious: "She d i d n ' t stop drinking w h e n we wanted her to, even though she felt it was a serious problem. What makes us think she will have a baby because we tell her that we are prepared to support her?" In other words, why not help clients set goals and make decisions instead of trying to make them do what we want them to do? In moving through this discussion with Delores, I started out with an honest, empathetic response, "I really do understand why you want to have a baby with a new partner who treats you so well. Let's talk about it. Could you bring him in next week?" Once we started to talk we covered all the bases. Did he know his HIV status? Was the couple willing to put him at risk of HIV exposure? Do they know the risk of maternal transmission? Would she be willing to use AZT during pregnancy to decrease these risks? Does she understand how alcohol binges would affect the fetus? Is there family support? What about the three children with grandma; are there plans for reuniting with them? What strengths and weaknesses would this couple have as parents? How would they cope if the baby were born infected or with Fetal Alcohol Syndrome? These were exactly the concerns of my colleagues. However, I knew that Delores and her partner would have to be the ones to answer the questions. I felt privileged that the couple felt enough trust to discuss such difficult issues with me. Meanwhile, I understand that changing models of teaching and working with clients can be difficult for a staff to absorb. But we can learn, just 39
A p p l y i n g t h e T r a n s t h e o r e t i c a l a n d H a r m R e d u c t i o n M o d e l s to P a t i e n t E d u c a t i o n i n C l i n i c a l Practice S e t t i n g s
as Delores was learning. For all of us, change is usually incremental, not monumental. In the complex tapestry of h u m a n life, things do not happen all at once. When we allow time for a relationship to take hold, we are able to see others as unique and to learn something about their rhythms and priorities. Building a relationship without giving advice is an intervention. It is rare that we need to "make something happen" for a client (as in true emergencie.s). Much more commonly, we suffer frustration w h e n we continually try to "save" our clients. Harm reduction is a philosophy that helping professions should begin to consider and discuss. For situations where this philosophy is deemed acceptable, using the stages of a change model will provide a pattern to use for slowing down, listening, and harmonizing with our client's intent. The outcome measure of this practice is an e n d u r i n g relationship with clients.
Save the Date 5th Annual Conference Canadian Association of Nurses in AIDS Care
April 23-26 1997 Toronto, Canada For more information: tel: 416/962-7600 fax: 416/962-5147
National AIDS-Cancer Conference April 28-30,1997 Bethesda, MD For more information: Dr. Ellen Feigal fax: 301/402-0557 e- mail: [email protected]
3rd International Conference AIDS Impact: Biopysychosocial Aspects of HIV Infection June 22-25,1997 Melbourne, Australia For more information: tel: +61 3 9819 3700 fax: +61 3 9819 5978 e- marl: [email protected]
12th World AIDS Conference June 28-July 3,1998 Geneva, Switzerland For more information: tel: +46 8 612 69 00 fax: +46 8 612 62 92 e- mail: [email protected]
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JANAC Vol.7, Suppl.1,1996
JANAC
Vol. 7, Suppl. 1,1996
Applying the Transtheoretical and Harm Reduction Models to Patient Education in Clinical Practice Settings Editor's Note: Nurses who work in a variety of clinical settings were asked to respond to this article and to evaluate how the principles of the stages of change and harm reduction could be used for patient education with their particular client populations. We received these responses. Substance Abuse Treatment by Brianne Fitzgerald,
MPH, RN, Health Services Consultant, Educator, and Manager, Dorchester, MA. The Transtheoretical and H a r m Reduction Models give providers tools that can help make sense out of substance abuse, a frustrating and difficult disease process. And they can do this by helping providers move to higher levels of functioning as well as b y helping clients learn to change behaviors. The Transtheoretical Model helps us to focus our attention and interventions. Its practiced use hones our ability to make educated assessments on how to encourage change by people at risk. But change does not come easy for either the provider or the client. Do you become excited with hopeful anticipation when you see a sick and suffering addict come into your practice? If you do, you are unusual. H o w can you move from fear, disgust, dread, and frustration w h e n you see such clients (precontemplation) to a point of detachment, hope and energy when they present (maintenance)? The first step for the nurse--and the key to change-is awareness and identification of your own feelings. If you are not aware that there are addicted p e o p l e in y o u r practice, or if you believe that for the most part they are a lost cause and there is nothing you can do, then you are in precontemplation. Little that is taught or suggested to you will change the way you think. My strategy as a colleague or a teacher, therefore, is to work with y o u in a respectful manner that maintains your dignity. Yet I must also confront y o u w h e n y o u say things that disrespect m y philosophy of care or dehumanize the person with 33
A p p l y i n g the Transtheoretical and Harm Reduction M o d e l s to Patient Education in Clinical Practice Settings
addictive disease. I must name what I see in a nonemotional way and then leave it alone. I must use my actions to raise y o u r awareness of alternative behaviors that demonstrate effective and compassionate care. I cannot talk you into seeing things the way I would like you to see them, but I can show you how to make a difference. Contemplation occurs when you become aware that something is amiss in your practice and begin to question the way you are doing business. During this time you begin to realize what it is that you might need to do to regain some balance and sense of satisfaction with your work. You may wonder why "these people" act in such an ornery way. You begin to ask questions. This questioning takes courage. Ideally, some of your questions will be directed toward the population you are trying to understand. Something as simple as asking "What is your day like?" can open new avenues for exploration. Action is practicing skills based on your new information, gathering more information, and being ever attentive to your inner feelings. Maintenance is some level of comfort in your new role, comfort in knowing that the only person you can change is yourself. You can change the w a y y o u view situations; y o u can change y o u r expectations; and you can change your own negative, self- defeating behaviors and thought processes. You cannot change the other person. You can, however, pass on information, skills, resources, and options that m ay improve the client's decision- making powers. If you are able to grow and change, you can demonstrate through your actions that growth and change are possible. Your experience will give you hope, and others may receive hope through your actions. You will have increased your control over the situations (how addicts make you feel) that have left you feeling inadequate. Relapse is not always a part of the process, but more than likely there will be times when you will get angry and hurt because you have been "conned" by a patient or have lost a client to follow up. You may actually ask yourself, "Does any of this matter? Can I really make a difference?" Honor and acknowledge these feelings; they will pass. And there will be new clients who can be assisted, against all odds, to make meaningful changes in their lives.
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I'd like to take this opportunity to share my own story about harm reduction. My background is in substance abuse treatment; recovery, abstinence, and the Twelve Steps were the foundations of my practice. Then came HW/AIDS and the world as I had known it was turned upside down. The journey that I have traveled to accept, and to embrace, harm reduction has been an exercise in humility. In 1987 I was appalled with the concept of harm reduction. "It is a license to use. We might as well give them the dope to shoot up with." I was proud to d e b a t e the C o m m i s s i o n e r of Publ i c H e a l t h in Massachusetts, stating ever so publicly that drug users were being given inferior services. Harm reduction was like offering a Band-Aid for a hemorrhaging wound. I was dramatic, I was angI3~ and I was scared. I was in the stage of precontemplation for a change to harm reduction. It was not an option that made any sense to me or to most of my colleagues. Time passed, however, and HIV/AIDS did not go away, drug addicts kept recycling through our treatment facilities, and we began to see more and more patients becoming HIV positive. Prisons were built; treatment facilities were closed; and nothing seemed to be working. A question commonly asked of those in recovery is, "What was the seminal event that got you on the road to recovery?" Sometimes there is a unique response, but more often than not there is no simple explanation. It is the process. And so it was as I worked m y way through the stages of contemplation and preparation and began to consider harm reduction as a viable alternative. The process required time, exposure to a growing b o d y of information, and interaction with addicted clients. H ow ever, the ultimate experience was visiting the Netherlands and seeing an array of substance abuse treatment options that ran the gamut from needle and syringe exchanges to vocational and housing programs for individuals and families w h o wanted to change their lives. Talking with addicts in the Netherlands helped me to begin to honor the philosophy that members of a community are their own best resources for affecting change within their own communities.
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I n o w use (action and maintenance) harm reduction as a viable tool in m y practice in the field of substance abuse treatment. Harm reduction strategies that I would ask you to consider include classes for users in detoxification centers or methadone maintenance programs that teach ways to monitor drug intake, to assess the triggers that stimulate use, and to affirm situations where control over the urge to inject are mastered. Consider positive group support, or acknowledging w h e n a client comes forward to discuss a day of decreased use, or assisting folks who are leaving detox with the express intention to get high by giving them clean works, or by acknowledging the reality of this disease, or by not shaming patients any more that they have already been shamed by saying such things as "You'll be back in detox before you know it." A m o r e p o s i t i v e i n t e r v e n t i o n w o u l d be to say, "We're here for you if you ever need us." The focus for change historically has been on the individual, often in a shame-based way. The community (drug users and clinics) needs to identify b o t h the need and the desire to change. The c o m m u n i t y also needs to identify its o w n spectrum of prevention and intervention programs that should include access to needles, syringes and condoms as well as to education, treatment and counseling. Harm reduction recognizes and addresses the reasons for the dismal recovery rate in substance abuse: primarily, the dualistic approach to treatment where a client is either in r e c o v e r y or in relapse, ignoring the area in between; but also the belief commonly held by providers that an active user has no control over any i m p o r t a n t aspect of her or his life. The H a r m Reduction M o d e l offers another way to consider this complex process of addiction by considering a wider array of options than is currently offered. The transtheoretical and harm reduction models help providers and patients alike to recognize and accept opportunities for change.
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Working With Families by Barbara Aranda-Naranjo, MSN, RN, Assistant Director, South Texas AIDS Center for Infants and Their Families, San Antonio, TX. The transtheorefical model and harm reduction model can both be used to work with families living with HIV infection. These models allow the practitioner to assess the person living with HIV infection within a holistic, m u l t i d i m e n s i o n a l f r a m e w o r k . Because p e o p l e living with H W infection are experiencing more than one set of h e a l t h - r e l a t e d imbalances, nurses w o r k i n g with this aggregate must be ready to assess and intervene using behavior change models that are more process-oriented than outcome-oriented. The Transtheoretical and H a r m Reduction models seem to fit that requirement. I have worked with families living with H W disease in South Texas for the past seven years, and it is clear that the majority of the clients do not seek health care for H W as a first priority. They are experiencing an array of health and h u m a n service problems such as inadequate housing, e m p l o y m e n t problems, decreased access to food, and family violence. In assessing and asking clients about their needs and goals, it is evident that a process for c h a n g e l e a d i n g t o w a r d a m o r e b a l a n c e d state of health care is needed. I have learned a lot as a clinician who works with these families. They have taught me to ask three questions before I attempt to initiate care. These questions help me to focus on the individual, the family and their social and cultural environments: 1) What is the experience of living with HW/AIDS for this family? Answering this question will require a number of discussions with the client. What is learned helps to contextualize the environment. 2) Within the described personal e x p e r i e n c e , w h a t b e h a v i o r c h a n g e s , if any, are this client/family willing to make? and 3) What cul0.rral and social v a l u e s d o I b r i n g to the d i s c u s s i o n w i t h the client/family and how do my values affect the process of change and the w a y in which intervention models are used? Once these questions are addressed, I can m o v e into the assessment and intervention phases of care. The Transtheoretical Model can be an effective means of facilitating a process of change in families. The five stages described in the m o d e l allow the n u r s e to be 35
Applying the Transtheoretical and Harm Reduction Models to Patient Education in Clinical Practice Settings
flexible in assessing and directing interventions for a wide range of identified needs. Some family- specific issues need to be discussed, however. A major problem is that the model appears to be individual, as opposed to group, focused. This is not an overwhelming problem, but some modifications need to be made when working with family groups, especially when more than one family member is infected. For example, the developmental level of all of the children, infected or not, will need to be assessed and taken into consideration when helping the family develop plans. In addition, the family as a unit would generally need to be consulted prior to the application of this model. It is also important to assess the readiness of the infected person and the family as a trait when initiating interventions based on this model. Timing for behavior change is critical, especially when working with clients in crisis, and families living with HIV disease experience frequent crises. Another confounding factor that is important to consider is that family members will not necessarily move through these stages at the same pace, and some may never achieve a willingness to consider change. This can create a "messy" state of affairs within the family, which the nurse may be asked to consider. Many women we encounter in our clinic have multiple family members who are infected and affected by HIM. They experience an initial shock at finding out that members of their immediate families are HIV infected, and they have a fear of community disclosure about their family's H1V status. These women will tend to stay in precontemplation until these issues are addressed to their satisfaction. At this point, many nurses and physicians make the mistake of pushing the client to decide on multiple interventions. A slower, accepting process may be a better approach to helping these women deal with their families' issues. In contemplation, family members begin to think of their behaviors as changeable and this leads to preparation for change. Action and maintenance require continuous assessment, client feedback, and supportive nursing care. The Transtheoretical Model allows nurses in HIV care to systematically apply, assess, and engage clients/fami36
lies in their own journey of behavior change processes. A critical factor in using this model is to establish mutual trust and respect with the client/family. An important tactic in this process is to explain the model to family members in ways they can understand. Clients have a right to be informed of the assessment tools and intervention models that practitioners use in assisting them to meet their needs. The Harm Reduction Model is an excellent second model to use with people living with HIV because it allows for a continuum of options for the client. This continuum is very important in working with people who have past and current histories of illegal behaviors. The continuum allows clients to see behaviors in relative rather than absolute terms, providing them with a wider range of personal choices. The harm reduction approach allows clients to choose between riskier/less healthy and safer/more healthy behaviors, empowering them to take charge of their health. The two models can be very useful to nurses and people living with HIV/AIDS. I work with family members who are primarily of Mexican-American descent. In our clinic, it is necessary to translate the models into Spanish. This increases the understanding of these processes for nurses as well as clients. In addition, a client-provider discussion of what concepts such as "self-efficacy" and "holistic" mean assists our clients to understand why nurses want to use these models. If nothing else, these models provide nurses with new and more realistic ways of looking at behavior change. The models are potentially useful for working with family groups as long as their holistic and flexible attributes are implemented and as long as the nurse maintains the familyas-client centered focus.
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Adolescent Interventions by Richard S. Ferri, Phi), RN,
ANP, HIV/AIDS Nurse Practitioner, Medicenter Five, Inc., Harwich, MA. Adolescents are generally overlooked and under-represented in the HIV/AIDS pandemic. The actual number of reported adolescents with HIV infection is relatively small. However, one out of every five cases of AIDS is diagnosed in the 20-to-29 age group. Given the long incubation period prior to symptom development and lack of adequate testing options for adolescents, it is clear that many young adults become infected as teenagers. Adolescents have developmental and age-specific factors that place them at increased risk for contracting HIV disease. Developmentally, adolescents live in the "here and now" and are present focused without regard for future consequences. Teenage bravado, described as a sense of invulnerability, is another major developmental issue that increases the risk-taking behavior of teens. Adolescents do not perceive themselves at risk for harm or acquiring a disease. For example, look at Jeff, a 22year-old client who has been living with AIDS for about four years. Jeff spends most of his time educating teens on HIV disease prevention. He has done numerous programs, interviews, and articles. He knows his facts and is a very impressive speaker. However, not until I diagnosed him with viral meningitis and admitted him to the hospital did it become "real" to him that he actually had AIDS. This was an epiphany for both of us. Specific adolescent risk factors include hemophilia, gay/lesbian/bisexual identify formation ("coming out"), non-consensual sexual activity, economically coerced sexual behaviors ("survival sex"), recreational sexual activity ("comfort sex"), and substance misuse. Gay, lesbian, bisexual, and questioning youth do not find the popular public health messages, such as abstinence until marriage, relevant. These heterosexist messages further isolate adolescents and do not address their needs for meaningful primary prevention messages. Primary prevention strategies need to be multidimensional and targeted to the adolescent's developmental needs and issues. Behavioral change for teens needs to be harm reductive in nature. Demanding complete JANAC Vol.7, Suppl.1,1996
adherence to numerous rules is counterproductive and actually may increase infection rates. There are some basic principles that should be incorporated into practice to assist behavioral change in adolescents. These principles include: 9 Adolescents must believe they are personally at risk. 9 Multiple options for behavioral change are essential. Offering only one option for prevention will not be effective. Abstinence-only curricula, for instance, do not address the needs of the already sexually active teen. 9 Positive peer pressure is very effective. Peer norms have a major influence on adolescent behavior. 9 Skills building workshops are necessary to assist the adolescent with negotiation skills and the ability to resist negative peer pressure. 9 Adolescents who believe in their ability to carry out behavioral change (self-efficacy) will have lower levels of risk behavior. 9 Behavior and beliefs that are adolescent centered must be valued and respected. 9 Cultural identity inclusion will assist in enhancing risk eduction skills and behaviors. 9 Heterosexuality should not be presumed to be the norm of the group. Homosexual and bisexual information should be included in a comprehensive manner, not as a separate item. Prevention strategies that are effective in the adolescent community are those that are adolescent centered and targeted to the individual. This goal is hampered by three major barriers to primary prevention education: adolescent perceptions that they are impervious to harm; the prolonged nature of H1V disease, which spares adolescents from ha~ng to watch peers die; and prevention curricula that are often a d u l t - c e n t e r e d in their approaches. Additionall~ youth who are ga~ lesbian, or bisexual are often dismissed as unimportant or even nonexistent. Attempts to help adolescents change their sexual activities need to be personalized regardless of the prevention strategy that is advocated--abstinence,
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A p p l y i n g the Transtheoretical and H a r m R e d u c t i o n M o d e l s to P a t i e n t E d u c a t i o n in C l i n i c a l Practice S e t t i n g s
monogamy, or explicit safer sex instructions. Denial must be overcome to help the adolescent understand that infection with HIV is a potential and ever present possibility Generally, the adolescent community is divided into either school-based or street-based groups. For the schoolbased adolescent, a peer leadership model is effective.Teens educated on the issues of H1V infection and transmission who can talk to their peers provide a mechanism that makes the information "real" to other teens. Adolescents value and personalize the information provided by a peer more so than from an adult. Many school systems have struggled with the issue of condom availability as a prevention strategy. The arguments, pro and con have been hotly debated. There is a generalized fear that condom availability programs will increase sexual activity of students and, therefore, lead to higher rates of infection. There is, however, little evidence to support this assumption. The issues and problems encountered by runaway, homeless, and "throwaway" adolescents are numerous and complicated. Implementing primary prevention programs in this environment can be daunting, but not impossible. Exceptional programs for street youth work because they examine the needs and lifestyles of street adolescents in their communities and develop interventions specific to the needs of those c o m m u n i t i e s . Generally, life skill development and improving selfesteem are the core issues that affect disenfranchised youth living on the street or in shelters. Developing effective primary prevention interventions that are directed to the multiple sub-populations of the adolescent community is critical to the public health. AIDS is the leading cause of death of all people ages 25 to 44. The need for nurses to develop effective strategies is clear. Nurses need to develop programs and interventions that address the issues faced by the general adolescent community and its specific subgroups such as runaway/"throwaway" youth, gay male youth, drug users, and adolescent sex workers. Adolescents in our society today carry virtually no political clout and d e p e n d largely on a d u l t society to c h a m p i o n their issues. Adolescents need nurses and the profession of nursing to advocate, educate, and provide care.
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Working With HIV-Infected Women by Risa Denenberg, MSN, RN, Family Nurse Practitioner, Consultant, and Health Writer, New York, NY. Bradley-Springer provides a persuasive description of two theories regarding behavior change. Further, she presents a pragmatic adaptation of these theories to nursing practice. But does this approach work with women in clinical settings? Are we equipped to measure the success or failure of our practice? My answer to these challenging questions is: It depends upon how we conceptualize success. Harm reduction is both a philosophy and a practice. As a practice, it is a set of strategies and tactics that encourages individuals to reduce the harm done to themselves by their behaviors. As a philosophy, it is still in the formative stages: those who apply its principles in working with clients are on the frontline of determining its application as a practice. Harm ~luction, at its core, is a philosophy of beneficence. It implies that, as a society, we wish to reduce the harm experienced by one of our members, even if it is caused by his/her own behavior. Unfortunately, the political mood increasingly creates a climate in which it is acceptable to blame people for their problems and to withhold, punish, and preach in response. Harm reduction shuns the authoritarian model in which professionals decide what is best and expect clients to do what they are told. By changing the process of working with clients, providers often experience more success and connection. Thus, harm reduction as a practice that embraces the transtheoretical model of change offers the opporhmity to revitalize the way in which professionals conduct relationships with clients. Sounds good, doesn't it? Think for a moment about my client, Delores, who is 26 years old, HIV positive, and presently struggling with her long-standing habit of intermittent alcoholic binges. Delores has three children, all in the custody of her mother-in-law. I know Delores well and, despite her history, have assessed that she has m a n y strengths as well as weaknesses. Today she tells me she has a new boyfriend and that they are "real s e r i o u s . . . even thinking about having a baby." Can I use the transtheoreticalmodel with her? Even if my answer is yes, are my colleagues prepared to support my practice?
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The reality is, not all professionals are prepared to embrace this philosophy of practice. Even if nursing staff in a clinical setting use the stages of change in patient teaching, other professionals (e.g., medical staff, social workers) may continue to rely on other, more authoritarian models. Furthermore, others may be uncomfortable with the idea that we are using a "harm reduction" model with "their" clients. First, I would ask the question, "will an authoritarian model work?" This is by no means a rhetorical question. From the point of view of bringing several disciplines together in our strategies, I would consider the questions, "Will Delores do what I think she should do?" and "Do I feel certain that I know what is best for her?" In staffing groups that I have w o r k e d with, almost everyone would agree that alcohol binging is not a good idea. But "should" she have a baby? I could argue eloquently that families affected by HIV have the same hopes and dreams for their lives as everyone else. When facing a shortened life span, we naturally begin to think of how we will be remembered. This is the spiritual dimension of procreation, creating a legacy. But this is merely my point of view. What do my colleagues think? Actually, Delores is considered to be a "doctor shopper." By this I mean that she has seen almost all the medical providers in the clinic at least once. Delores was labeled "noncompliant" because she refused to take medication for her HIV infection and f~quently missed appointments. Her problem list included the label "alcoholic." In reviewing the chart, it is clear that Delores had not followed up on repeated suggestions that she enter an alcohol treatment program. Surprisingly, almost all the professionals that knew Delores liked her and really wanted to help her. Naturally, these professionals felt very frustrated. On the other hand, Delores had been consistent in keeping appointments with me for about eight months. I had assessed that she was not ready to change her beliefs about HIV treatment (precontemplafive stage), was ambivalent about her drinking (contemplative stage), and was determined to stop smoking (preparation stage). Thus, I supported her goal by proJANAC Vol.7, Suppl. 1,1996
viding information, empathy, and a referral for acupuncture. She quit smoking two months ago. My criterion for success is simple: I judge it a huge success that we have maintained a relationship for eight months. Working to help my client articulate her own goals and supporting those goals resulted in her success at smoking cessation. And this success can be counted on for increased selfefficacy in the future. This concrete example of the application of these theoretical models was well-received at a professional case conference. Still, when I raised the issue of Delores' desire to become pregnant, my colleagues were hesitant to support her goal. I pointed out the obvious: "She d i d n ' t stop drinking w h e n we wanted her to, even though she felt it was a serious problem. What makes us think she will have a baby because we tell her that we are prepared to support her?" In other words, why not help clients set goals and make decisions instead of trying to make them do what we want them to do? In moving through this discussion with Delores, I started out with an honest, empathetic response, "I really do understand why you want to have a baby with a new partner who treats you so well. Let's talk about it. Could you bring him in next week?" Once we started to talk we covered all the bases. Did he know his HIV status? Was the couple willing to put him at risk of HIV exposure? Do they know the risk of maternal transmission? Would she be willing to use AZT during pregnancy to decrease these risks? Does she understand how alcohol binges would affect the fetus? Is there family support? What about the three children with grandma; are there plans for reuniting with them? What strengths and weaknesses would this couple have as parents? How would they cope if the baby were born infected or with Fetal Alcohol Syndrome? These were exactly the concerns of my colleagues. However, I knew that Delores and her partner would have to be the ones to answer the questions. I felt privileged that the couple felt enough trust to discuss such difficult issues with me. Meanwhile, I understand that changing models of teaching and working with clients can be difficult for a staff to absorb. But we can learn, just 39
A p p l y i n g t h e T r a n s t h e o r e t i c a l a n d H a r m R e d u c t i o n M o d e l s to P a t i e n t E d u c a t i o n i n C l i n i c a l Practice S e t t i n g s
as Delores was learning. For all of us, change is usually incremental, not monumental. In the complex tapestry of h u m a n life, things do not happen all at once. When we allow time for a relationship to take hold, we are able to see others as unique and to learn something about their rhythms and priorities. Building a relationship without giving advice is an intervention. It is rare that we need to "make something happen" for a client (as in true emergencie.s). Much more commonly, we suffer frustration w h e n we continually try to "save" our clients. Harm reduction is a philosophy that helping professions should begin to consider and discuss. For situations where this philosophy is deemed acceptable, using the stages of a change model will provide a pattern to use for slowing down, listening, and harmonizing with our client's intent. The outcome measure of this practice is an e n d u r i n g relationship with clients.
Save the Date 5th Annual Conference Canadian Association of Nurses in AIDS Care
April 23-26 1997 Toronto, Canada For more information: tel: 416/962-7600 fax: 416/962-5147
National AIDS-Cancer Conference April 28-30,1997 Bethesda, MD For more information: Dr. Ellen Feigal fax: 301/402-0557 e- mail: [email protected]
3rd International Conference AIDS Impact: Biopysychosocial Aspects of HIV Infection June 22-25,1997 Melbourne, Australia For more information: tel: +61 3 9819 3700 fax: +61 3 9819 5978 e- marl: [email protected]
12th World AIDS Conference June 28-July 3,1998 Geneva, Switzerland For more information: tel: +46 8 612 69 00 fax: +46 8 612 62 92 e- mail: [email protected]
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