Emily Pajevic, Class of 2015
The University of Akron/NOAC
Over the years it has become clear that counseling is a key component in patient care and in promoting patient success. In pediatrics this counseling is primarily focused on the parents. It is, after all, the parents who will be responsible for raising the child and helping the child over the many challenges they are bound to face as a family. Here a large assumption is made: we assume that at the point of diagnosis, the child is too young to understand the implications of the news presented to the parents. We often picture an infant, asleep in the mother’s arms or a child playing with blocks on the floor while the results are being discussed. When the child gets older we ask parents for a progress report: How is she adjusting in school? Is he wearing his hearing aids? Making friends? Developing some self-advocacy skills?
All valid and important questions but what about when we evaluate teenage patients who are old enough to understand what is being said? Here we may be at a loss. We are now looking at too many unknowns. Will they trust us enough to explain their challenges? Will they understand what we are trying to explain? How might they react? Should the parents be the one to explain? How much information should we give them? How are we to begin to explain to an adolescent when we still struggle getting parents to understand? How do we know when they are ready? Unless we consider these questions ahead of time, we tend to take the familiar route, the route of safety: we talk to the parents, picturing that child to be the infant we are perhaps more comfortable with. We then allow the parents to fill in the gaps at home.
A possible scenario
Consider how this tendency affects this thirteen year old patient as she learns of the results of her auditory processing assessment:
Amanda shuffles her feet back and forth, staring down at the floor, wondering what the cafeteria at school had served for lunch today and what her friends were doing during gym class at this very moment. She sits on her hands and kicks her feet back and forth more vigorously, deep in thought until she catches her mom’s narrowed eyes, clearly telling her to knock it off. Man, mom is in a bad mood today. She glances over at her mom who is now drumming her fingers on her thigh with a furrowed brow. What’s her problem? Amanda thinks. I’m the one who has been asked stupid questions all day and had to sit in that tiny room for over an hour while she just read magazines.
Just then the door opens and her mother quickly straightens up and folds her hands in her lap, her expression eager. Amanda rolls her eyes and goes back to kicking her feet. She watches the feet of the audiologist as she walks in and sits down across from her. Amanda goes back to thinking about her friends, idly listening to her mother and the audiologist talk. “Just so you know, an auditory processing disorder is not considered a learning disability in this state so be prepared to push a little to get Amanda the help she needs.” Amanda’s right foots kicks the leg of her chair and she throws out her arms to steady her chair as it tilts. Learning disability?! Amanda flushes and stares at the floor listening carefully now, her feet still. The audiologist is talking about giving papers to the special education department and tutoring and then… “Amanda, what are your thoughts?”Amanda feels her face and eyes burn, her head spinning with the words disability, special education, help…she keeps her head down but raises her eyes to see the audiologist and her mom staring at her with strange, forced patronizing smiles on their faces. “I’m fine,” she says quickly, suddenly wishing she had gone to school today instead. “Amanda please tell us what questions you have, you must have some.” “No!” Amanda says too loudly, startling both her mother and the audiologist. Amanda stares furiously at the floor. She takes a deep breath to steady her voice, “No. Fine. Mom, let’s go.” Her mom stands up to shake the audiologist’s hand. Amanda stays seated until she sees her opening and then slides off her chair, aims for the door, and walks back to the waiting room without another glance at the audiologist.
How does an audiologist best serve Amanda and other adolescent patients? We cannot continue to primarily address the parents, undermining the patient’s knowledge and concern for his/her own healthcare and yet cannot ignore the parent’s need for understanding and the crucial role that they play. In healthcare, as well as our own profession, this topic of interacting with adolescents needs to be explored. If the unknown prevents us from providing the best care to this patient population, it is time to delve into this uncharted area, further expanding our knowledge and understanding to enhance our field and our impact on those we serve.
Learning from Adolescents
Perhaps the best starting point for information about adolescents is to ask adolescents. Studies looking at both chronically ill and healthy children explore the various aspects of adolescent health care with those who have experienced it firsthand, their families, and even their health care providers. A study performed by Britto et al. (2004) asked teens about their health care experiences and preferences and found that overall, the interpersonal skills of a physician ranked of higher importance than technical competence with honesty being considered the most important trait of all. Some of the most desired physician traits included: going the extra mile, viewing the patient as a whole person, admiting to mistakes or lack of knowledge regarding a specific topic, asksingfor the patient’s opinion, helping the patient understand the information given, and taking the patient’s concerns seriously. A similar study by Klostermann and colleagues (2005), yielded very similar results, with trust given as the most important and desired trait in a health care provider.
In looking at these studies and the simplicity of adolescent expectations for a health care provider we can see that they are not so different from our adult patients. The main barrier may be communication between the professional and patient, affected by level of patient maturity, involvement of family members, unfamiliarity, and resulting uneasiness of all involved. Ginsburg (2013) suggests that many adolescent patients desire to be an active part of their own health care and deserve to do so. Again, there is a barrier preventing a smooth exchange between the professional and the adolescent patient. If we are to overcome this barrier and serve this population in the best way possible, we need to find the answers to several primary questions. First, who should be predominately addressed, patient or parents? Second, how do we ensure that both parties, patient and parents, are satisfied with the knowledge that has been conveyed? And, finally, how should the information be delivered?
Learning from Related Professions
In order to answer these questions we must now turn to related fields who have explored interactions with adolescent patients. McDonagh & Viner (2006) described adolescence as a “window of opportunity” to create good health care habits and positive, healthy practices. They also suggest that all health care providers should receive training in working with adolescents. The general consensus appears to be that much research and education is still needed regarding adolescents and health care.
While these fields of health care can no better answer our primary questions due to the many patient and situational variables, they do offer us the concept of transition. This concept helps us to work with a population that has adult-like needs and expectations but does not yet possess the skills necessary to function independently in the adult world (McDonagh & Viner, 2006). Adolescents cannot be treated like children forever, nor can they be thrown into the adult health care system, so a transition allows them time to learn about their own health, develop autonomy, responsibility, confidence, and good health habits with the support and instruction of their family and health care professionals.
The transition process consists of multiple stages throughout adolescence, which is customized for each patient but ultimately aims to teach teens communication, decision making, assertiveness, self advocacy, and responsibility. This process should not only focus on adolescents’ health care needs but also other aspects of their life, working to develop the person as a whole. Throughout the transition, the decision-making and responsibilities will gradually move from family to patient at a pace ideally dictated by the adolescent (Royal Nursing College, 2004). Self-assessments are highly recommended as a method for ensuring both patient and family are satisfied with the transition and its impact on their lives. Initial assessments can help the professional get an idea of where to start and periodic assessments can prevent any discontentment and unanswered questions or concerns.
It should be noted that this transition may or may not involve the moving of the patient from a pediatric physician and/or audiologist to an adult care provider. In situations where the patient is moving to an adult care physician but sees an audiologist who works with all ages, we may find ourselves as the only stable part of the patient’s changing world. In situations such as this our ability to help transition the patient becomes even more important, as does our communication with the family and other health care providers.
Creating a Transition Plan
Several transition plans have been proposed which aim to help clinicians work with the patient and family, guiding them through appointments and overall development with the ultimate goal of raising a self sufficient young adult capable of taking charge of their own health care. Multiple studies in related fields agree that age should be a guideline when establishing a transition plan but each individual patient’s level of maturity should be taken into account (Royal College of Nursing, 2004). The family must be part of this process, taking the greatest role during the early years, and later providing support as the teen begins to take the more active role. It has also been generally agreed that the transition phase should be well planned out and the patient and family should work with the health care professionals to create the plan (Reiss, Gibson, & Walker, 2005). This plan will consist of various short and long term goals as well as the desired time frame which will be checked and re-evaluated often (McDonagh & Viner, 2006). Goals may be as simple as encouraging teens to ask questions during the appointment or more difficult such as scheduling their own appointments.
Proposed transition plans typically suggest 3-4 transition stages based primarily on age, which can be adjusted for maturity and patient preferences. Here a three stage model for audiology will be discussed. Stage 1 should begin in late childhood or early adolescence, ages 12-14. At this stage the patient is not yet able to take responsibility for their own health but needs to be given a sense of power and confidence. Ginsburg (2013) suggests that we first sit down with the patient and discuss how the patient- professional relationship works. We might tell the patient why we are asking certain questions which may not seem related to their complaint. We may also explain that our aims are to be honest, serve them in the best way that we can, and keep their information private (2013). During the case history and counseling the patient should primarily be addressed for the more basic questions and information, giving them a sense of ownership over their health (Britto et al., 2004). Deciding who should be addressed should default to the patient whenever possible or appropriate but will ultimately depend on the patient-family dynamic and individual personalities. During this stage the idea of the transition plan will be introduced, encouraging the family to constantly be envisioning the future for their child and how they might reach this goal (Reiss et al,, 2005). By age 14 a transition plan should be in place with the understanding that it will undergo many revisions over time (McDonagh & Viner, 2006).
The Royal Nursing College (2004) suggests that during this first stage we should talk to the patient about the meaning of confidentiality, understanding their hearing loss and/or condition, support systems such as family members and friends, and any perceived limitations due to their hearing loss. By the end of this stage patients should understand the patient-audiologist relationship, their hearing loss and any other health issues, and participate in the appointment. The audiologist should be reviewing the transition plan with the patient and family at regular intervals, communicating and working with the patient’s other health care providers, and be constantly assessing the patient’s developing understanding, maturity, and autonomy.
Stage 2 should take place around the ages of 14-16 (Royal Nursing College, 2004). During this stage, the major focus should be laying the foundation for the responsibility and knowledge the patient will ultimately need when handling his or her own health. Reiss et al. (2005) suggest working with the parents to assign adolescent with small tasks in health care, daily living, and so on which will help them to develop necessary skills. Rather than doing this in a homework type fashion, it may be more effective to do in such a way as to present the patient with ways to display independence. For example, the family may give the patient complete responsibility over hearing aid batteries: making sure some are on hand and when needed, purchasing more. These tasks should be given slowly and in various areas so that their developing skills will help them in all areas of their lives.
The family and patient should, at this point, have a good understanding of the transition process and begin learning about the world of adult health care and what will be involved once the patient is completely autonomous (Royal Nursing College, 2004). It may be appropriate at this stage to begin speaking with patients in private, giving them the opportunity to ask questions and talk with the audiologist without the parents, even if only at the beginning or end of appointments (Britto et al., 2004). By the end of this stage patients should know how and where to access information on their health, be able to keep track of appointments, answer most of the audiologist’s questions, and be practicing responsible behaviors. The audiologist should be regularly updating and reviewing the transition plan with the patient, family, and other health care providers, encouraging the patient to ask questions, and discuss joining social groups, school progress, friends, home life, future plans, jobs, body image, and any concerns the patient may have (Royal Nursing College, 2004).
Stage 3: The third and final stage of this transition plan will begin around age 16 and last until the patient can be considered an adult and autonomous in his or her healthcare. The main focus for this stage is to ensure the patient, family, and audiologist are all comfortable with the patient taking responsibility for health management. If the patient has been seeing a pediatric audiologist up to this point, this is the time for the audiologist to discuss options for an audiologist who works with adults. Depending on the patient, the audiologist may help schedule the first appointment and see the patient again after to ensure the transition is going well. It is very important that pediatric care continue until the audiologist is certain the patient is fully in the care of another audiologist (Patterson & Lanier, 1999). In this stage it is important that the audiologist talk with the patient about future plans such as college or employment, any adjustment issues, and contacts for any advice or help they may need (Royal Nursing College, 2004). By the end of stage 3, patients should be taking responsibility for their own health care, feel comfortable in the transition, be able to attend appointments alone, and display necessary skills for adult care such as appointment scheduling, problem solving, and information collection. The audiologist should review the transition plan a final time and make sure all goals have been met, feel comfortable with patient’s ability take care of own health, provide patient with any contacts or tools necessary, and finally, view the patient as a competent, responsible adult.
Final Thoughts
The concept of transitioning the adolescent patient provides us with some answers to our previous questions. The person who is addressed in the appointment depends on the point in transition. For younger children, the family should be addressed but this should quickly change as the patient reaches her teen years. When in doubt, addressing the patient first for the basics is often a safe path. Self-assessments completed at fixed intervals can ensure everyone is satisfied and all concerns and questions have been addressed. Here a strong relationship with the family and patient where questions are encouraged will also aid in making sure both parties feel they are being served well. Information delivery should ultimately be discussed and planned with the patient and family and given in such a way so that the patient and family are empowered.
Had Amanda in our earlier scenario been viewed as a patient in Stage 1 of the above transition plan, her experience would likely have been more positive. Had Amanda understood the audiologist’s aims and been addressed first, before her mother, she may have taken a more active role in the appointment. By not being addressed until half-way through counseling, the message was sent that Amanda was still a child and should not concern herself with adult matters. By being left out of the discussion about her health, Amanda was filled with fear and anger, not understanding her diagnosis and left to make her own assumptions. The transition plan may be the best tool we have at this time to aid in working with adolescents and ensuring them the best care possible. By working alongside the family and adolescent patient to encourage his or her growth, autonomy, and self advocacy we can ensure that adolescent patients are given the necessary care and skills to reach their greatest potential.
References
Britto, M.T., DeVellis, R.F., Hornung, R.W., DeFriese, G.H., Atherton, H.D., & Slap, G.B (2004). Health care preferences and priorities of adolescents with chronic illnesses. Pediatrics,114(5), 1272-1280. doi: 10.1542/peds.2003-1134-L
Ginsburg, K.R. (2013, April 1). Earning a teenager’s trust [Video file]. Medscape. Retrieved from http://www.medscape.com/viewarticle/781366?nlid=30098_1521&src=wnl_edit_medp_wir&spon=17
Klostermann, B. K., Slap, G. B., Nebrig, D. M., Tivorsak, T. L., & Britto, M. T. (2005). Earning trust and losing it: Adolescents’ view on trusting physicians. The Journal of Family Practice, 54(8), 679-687.
McDonagh, J.E. & Viner, R.M. (2006). Lost in translation? Between paediatric and adult services: It’s time to improve the transition of adolescents from paediatric to adult services. British Medical Journal, 7539, 332. 435-436. doi: 10.1136/bmj.332.7539.435
Patterson, D.L. & Lanier, C. (1999). Adolescent health transitions: Focus group study of teens and young adults with special health care needs. Family & Community Health, 22(2), 43-58.
Reiss, J.G., Gibson, R.W., & Walker, L.R. (2005). Health care transition: Youth, family, and provider perspectives. Pediatrics, (115)1, 112-120. doi: 10.1542/peds.2004-1321.
Royal College of Nursing (2013). Adolescent transition care: Guidance for nursing staff. (Publication No. 002313)