- Email: [email protected]
Communicating with young people
PAEDIATRIC RESPIRATORY REVIEWS (2003) 4, 319–324 doi: 10.1016/S1526–0542(03)00090-3
SERIES: ADOLESCENT ISSUES
Communicating with young people Christoph Rutishauser University Children’s Hospital, Steinwiesstrasse 75, CH-8032 Zurich, Switzerland KEYWORDS adolescent development; psychosocial history; communication skills; adherence
Summary Age-appropriate communication skills help health professionals to engage effectively with young people. These communication skills are a key element for improving adherence with the health care regimen in young people with respiratory conditions, particularly those with chronic disease. Age-appropriate communication skills and assurance of confidentiality enable the clinician to assess the young person’s psychosocial development and to understand his or her burden of illness, which form the basis for negotiating age-appropriate therapeutic goals and strategies. Negotiation of treatment may be the single most important factor that improves adherence in adolescent patients, resulting in more effective health outcomes. ß 2003 Elsevier Ltd. All rights reserved.
INTRODUCTION Treating adolescents, particularly those with chronic respiratory disease, is both challenging and rewarding. Unfortunately, there is evidence that many physicians feel uncomfortable when dealing with young people owing to a lack of adequate training in adolescent health care. Veit et al. showed that 82% of general practitioners in Victoria, Australia, had an incomplete understanding of the developmental aspects of adolescence, 75% had concerns about their own knowledge of and competence in delivering adolescent health care and 91% stated that they had received little or no formal training in adolescent health.1 A recent European study revealed, similarly, that 95% of Swiss paediatricians stated that they had little or no training in communication skills with adolescents, 80% said that they had little or no training in psychosomatic disorders in adolescence and 64% said that they had received insufficient training in how to manage young people with chronic disorders.2 Importantly, Bichsel et al. showed that there was a gap between the expectations of adolescents and their experiences when seeing physicians, particularly with regard to issues of confidentiality.3 Respiratory physicians have the opportunity to improve their adolescent patients’ health outcomes by communicating more effectively with young people. According to some studies, for example, current treatments have, Correspondence to: C. Rutishauser. Tel.: þ41 1 266 78 13; Fax: þ41 1 266 71 71; E-mail: [email protected] 1526–0542/$ – see front matter
despite the availability of highly effective asthma medication, failed to significantly reduce morbidity and mortality in adolescents with asthma.4,5 Part of the reason may be that many physicians do not engage effectively with their adolescent patients.1,2 Communication that takes into account the adolescent’s psychosocial development and is based on gaining an understanding of the young person’s burden of illness is likely to result in improved adherence and thus better health outcomes.6 This article aims: to provide an understanding of normal adolescent development and the potential interference with the treatment of respiratory disorders, particularly chronic respiratory disease; discuss clinical strategies that more effectively engage young people; highlight important aspects of management that improve adherence in adolescents; consider legal aspects of consent in minors.
ADOLESCENT DEVELOPMENT Adolescence is defined as the transition from childhood to adulthood, which includes aspects of physical, cognitive, emotional and social development.7 The period of adolescence has effectively increased over the past century. The longer time spent in education, for example, results in many young people being financially dependent on their parents for longer. The World Health Organization defines ß 2003 Elsevier Ltd. All rights reserved.
320
Table 1
C. RUTISHAUSER
Biopsychosocial development of adolescents
Task
Early adolescence
Middle adolescence
Late adolescence
Age (years)
10–13
14–16
17–20 and beyond
Somatic
Onset of puberty: sex characteristics, rapid growth
Height growth peaks; body shape and composition change; acne and odour; menarche; spermarche
Slower growth; physical maturation complete
Body image
Preoccupation with self and pubertal changes
General acceptance of body; concern with attractiveness
Acceptance of pubertal changes
Sexual
Sexual interest usually exceeds sexual activity
Sexual drives emerge; experimentation; questions of sexual orientation
Consolidation of sexual identity
Cognitive and moral
Concrete operations; conventional morality
Emergence of abstract cognition; questioning mores; self-centred
Idealism; absolutism
Independence
Less interest in parental activities
Continued struggle for acceptance of greater independence
Reacceptance of parental advice and values
Peers
Same-sex groups
Conformity with peer values; increased sexualised activity and experimentation
Peer group less important; more time spent in sharing intimate relationships
adolescence as ‘‘the period ranging from 10 to 19 years’’, and young people as ‘‘being between the ages of 10 to 24 years’’.8 The period of adolescence can be subdivided into early, middle and late adolescence (Table 1). In early adolescence, the question ‘‘Am I normal?’’ predominates. In middle adolescence, the key question for the young person is more often ‘‘Who am I?’’ In late adolescence, the young person focuses more on ‘‘Where am I going?’’ Passing through adolescence, young people achieve a number of adolescent developmental tasks such as the acceptance of their own body, the establishment of sexual identity, finding more mature ways of relating to their peers and establishing emotional independence from their parents and other adults.9 The achievement of these tasks is part of the transitional process from childhood to adulthood. Risk-taking behaviour may be seen as part of normal experimentation by young people in exploring new and different behaviours and their consequences.10 There is good evidence to suggest that young people with respiratory disease experiment with cigarette-smoking as much as healthy adolescents do.11 Experimentation with tobaccosmoking does not necessarily lead to becoming a regular smoker, although young people underestimate the risk of nicotine addiction.12 Occasional risk-taking behaviour needs to be differentiated from regular risk-taking behaviour (e.g. regular substance use such as daily smoking, weekly marijuana or unprotected sexual intercourse). Regular risktaking behaviour is associated with a higher rate of mental health problems such as depression and anxiety and can also reflect poor social competence in young people.13,14 Young people are confronted with numerous physical as well as psychosocial challenges during adolescence, which can cause confusion, insecurity and self-doubt. Despite this, most young people progress through adolescence with few
major problems. In contrast, approximately 20% of healthy young people will experience a greater degree of difficulty in progressing to adulthood.15 Those with chronic respiratory disorders face additional adjustment risks as the presence of a chronic illness can limit their opportunities to engage in the normal tasks of adolescent development (e.g. seeking independence, intimate relationships, academic achievement, tertiary education and work). Furthermore, it is during adolescence that, because of the development of abstract thinking, young people can become more acutely aware of the longer-term burden that chronic respiratory illness and its treatment may have on their current and future life in relationship to increased dependence, reduced autonomy and reduced life choices. In some young people, this awareness can inadvertently lead to a neglect of their health and reduced adherence to therapeutic regimens.16,17 The assessment of a young person’s physical, cognitive, social and emotional development and, in particular, the identification of risk-taking behaviours, can lead to timely interventions that can help young people to think differently about their respiratory illness and their response to it.
CLINICAL STRATEGIES TO ENGAGE WITH YOUNG PEOPLE Many young people perceive doctors as a highly credible source of information about their health. They are, however, commonly reluctant to visit a doctor because of fears concerning issues such as confidentiality, communication or lack of empathy or a perception of the judgemental attitudes of physicians.18,19 For example, a significant percentage of female adolescents with cystic fibrosis suffer from urinary incontinence but feel too embarrassed to talk
COMMUNICATING WITH YOUNG PEOPLE about it with their doctors.20 The assurance of confidentiality and good communication skills may help adolescents to talk more openly and honestly about sensitive issues. Other barriers to accessing health can be clinic opening times, long waiting times, a lack of sensitivity of the reception staff and poor public transport to clinics.
Before the consultation Successful engagement with young people starts well before the first consultation. The young person who enters the clinician’s office should be greeted by the reception staff in an age-appropriate manner rather than being treated like a young child. Waiting areas that have age-appropriate magazines and health education items of interest to adolescents demonstrate that the clinic commonly sees adolescents. If the young person is accompanied by his or her parents, introducing oneself to the young person first, and then the parent’s, emphasises that the young person is an important focus of attention for the clinician.
Who do you consult with? Having time to speak with the clinician alone is well recognised as an important element of consultations with young people. Bichsel et al. showed that 43% of 13- and 15year-old adolescents said it was important for them to get the opportunity to talk alone with their doctor for some time: only a minority was, however, offered this opportunity.3 There are different approaches to starting the consultation. Some physicians prefer to meet the young person alone from the beginning, whereas others prefer to meet the young person with the parents first and then interview the young person alone later. Different factors may help to determine the approach, such as the adolescent’s age and the reason for the consultation, together with the clinician’s and adolescent’s preference. The adolescent may, for example, be asked, ‘‘There are young people who prefer to see the doctor alone; how about you?’’
Communicating what will happen Young people, unlike adults, do not necessarily understand how consultations work. They find it reassuring to be given an overview of the appointment structure, for example the order of history-taking, physical examination and laboratory investigations. If the young person is being seen with the parents first, it is best that parents are informed at the beginning of the session that they will be with the clinician initially and will then be asked to wait outside until returning for a brief ‘‘summing up’’. Clinicians who have known the patient for many years need to prepare both the adolescent and the parents in advance of seeing the young person alone for at least part of future consultations as young people have learnt not to expect it and their parents may feel abandoned without explanation and time to adjust.
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Confidentiality and consent It is crucial to discuss confidentiality with the adolescent patient in order to establish a sense of trust. For example, young people with asthma who smoke may not be prepared openly to discuss this issue with their clinician because of a fear that their parents will find out or because of concerns about the clinician’s judgement of them. Several studies show that adolescents are more willing to disclose sensitive information and seek health care from physicians who assure confidentiality.18,21,22 In the survey of Bichsel et al., 73% of adolescents stated that it was important for them that doctors keep information confidential on request, even with regard to their parents. In that study, however, few physicians assured their patients’ confidentiality.3 If physicians do not talk about confidentiality, adolescents do not know whether their doctor will keep information confidential. For legal reasons, the physician can only assure conditional confidentiality with regard to the young person’s caregivers. This means that the assurance of confidentiality can be provided unless the young person is at risk of serious self-harm or homicide (see the information on legal aspects below). It may be preferable to clarify with the young person that conditional confidentiality is provided with regard to the parents only if explicitly requested by the young person. The legal basis for providing confidentiality to young people, even with regard to their parents, is the right of consent by minors. Most developed countries allow minors below the age of 18 years to consent to medical treatment under certain conditions. An adolescent is generally perceived to have reached sufficient maturity to give informed consent if the physician is satisfied that the adolescent has sufficient intelligence and understanding of the purpose of the proposed treatment and its effects, its side-effects, the consequences of non-treatment and other treatment options.23 In such cases, the physician is able to accept consent from minors without parental consent if the young person refuses to inform the parents or the caregiver of any intended treatment and if the treatment is in the adolescent’s best interests, is well established and is not too complex to be fully understood by minors. Adolescents below the age of 14 years are generally not considered to have reached sufficient maturity. It is obviously important that physicians have a good understanding of their individual country or state laws in relationship to informed consent by minors. Adolescents are commonly reluctant to inform parents about particular issues because of their anticipated negative response. Having informed their parents, however, many young people later realise that their fears were unfounded. Thus, in addition to assuring confidentiality, physicians also have a responsibility to encourage young people to find ways of talking to their parents or other important adults about sensitive issues. An offer by the physician of being with young people while they talk to their parents is helpful for some adolescents.
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C. RUTISHAUSER
Physical examination The physical examination of adolescents does not necessarily differ from that of older patients. However, as adolescents may not feel safe or confident, explaining what will be examined and why can be very reassuring. It is important to explain all findings, including normal findings, to the adolescent given that a key question for many young people is whether their growth and development is normal. Clinicians can usefully refocus this concern in relationship to review visits. The clinician may, for example, wish to review a young person to check that his or her asthma is sufficiently well controlled. In contrast, a young person with suboptimal growth may be more interested in returning to have his or her growth checked. Framing the reason for review in terms of checking both asthma and growth is a technique that prompts return visits. The assessment of pubertal development is an important part of the clinical assessment of adolescents. Some physicians might find it more appropriate to have another adult of the same sex as the patient with them while performing this examination.
Assessment of psychosocial development The assessment of the cognitive, social and emotional development of a young person is one of the cornerstones Table 2
for the successful treatment of young people. One of the interview techniques widely used to assess the young person’s psychosocial development is the HEADSS screen, developed by Goldenring and Cohen (Table 2).24 The basic concept of the HEADSS screen is to start by asking questions about generally less sensitive topics such as family, education, activities and peers and then move on to potentially more difficult topics such as substance abuse and sexuality. The physician should explain to the young person why these questions are being asked as many young people are suspicious when asked highly personal questions. Try, for example, ‘‘I am not just interested in your physical but your overall health so I would like to ask a few questions about how your life is going, which I ask all my patients. . ..’’ Another useful element is for the physician first to ask questions that refer to a third party, which are generally viewed as less confrontational and less judgemental. A physician who wants to know whether a young person with chronic respiratory illness smokes may, for example, do better by not asking the young person directly but by enquiring about the young person’s friends, for example ‘‘Many young people your age experiment with cigarettes. What proportion of your friends smoke? Have you ever tried smoking? How much do you smoke?’’ The HEADSS screen is ideally used as a style of conversation rather than as a list. It is a tool that can be used to engage better with young people and where they are ‘‘at’’ in life. It can
The HEADSS psychosocial screening
Home
Where do you live and who lives with you? How do people get along with each other at home? Who could you go to if you needed help with a problem? Have you moved recently?
Education
What do you like/not like at school? What are your favourite/worst subjects? How do you get along with teachers/other students? Have your grades changed recently?
Activities and peers
What do you do in your spare time out of school? What do you like to do for fun? Do you engage in regular sports/exercise? Any hobbies? How much time do you spend watching TV/playing on the computer? Do you have any friends you can trust?
Drugs
Many young people at your age experiment with cigarettes, alcohol and drugs. How about your friends? Have you ever tried them? If yes, have you ever considered quitting?
Sexuality
Some young people at your age are getting involved in sexual relationships. Have you had a sexual relationship with anyone? What did you do/would you do to prevent pregnancy and sexually transmitted diseases? Has anyone touched in a way that’s made you feel uncomfortable?
Suicide risk and depression
Have you ever thought that life was not worth living? Have you ever thought about/tried to hurt or even kill yourself? If yes, did/do you have a plan how to hurt or kill yourself? When did you last have these thoughts? How do you feel about this right now?
Adapted from ref. 24.
COMMUNICATING WITH YOUNG PEOPLE
identify both risk and protective factors, as well as opportunities for health promotion. Screening should be followed by feedback, reassuring the young person about areas in their life that seem to be progressing well and defining other areas that appear to warrant further discussion. Some physicians might argue that the assessment of the young person’s psychosocial development is time-consuming and beyond their role of diagnosing and managing respiratory diseases. It can be argued that only those physicians with a broad understanding of young people’s social context are able to negotiate management plans that are acceptable to young people. Thus, the use of psychosocial screening can be very cost-effective when it is recognised that young people are far less likely to adhere to treatment regimens that are provided by clinicians whom they do not respect or understand and that are not developmentally appropriate.
Strategies to improve adherence Adherence refers to the extent to which patient behaviour, such as taking medications, following a diet or executing lifestyle changes, coincides with the clinical prescription.25 It is increasingly recognised that poor adherence is a major problem for many patients, including adolescents with chronic respiratory disease.26 It has not been shown that adolescents are less adherent to treatments than adults with chronic conditions. As with adults, however, physicians may do best by assuming, as the starting point, that adolescents are less than ideally adherent. Poor adherence to the therapeutic regimen is usually conceptualised as a patient problem. Some authors, however, argue that this concept is clinically unhelpful as it does not take into account the way in which the doctor–patient relationship has changed over time, the patient being seen more and more as a mature partner who makes decisions based on the physician’s expert advice.27 If one defines adherence as an active and voluntary agreement with the therapeutic regimen resulting in ‘‘collaborative involvement of the patient in a mutually acceptable course of behaviour to produce a desired preventative or therapeutic result’’, as proposed by Meichenbaum and Turk, the responsibility for improving adherence lies primarily with the physician.27,28 In order to improve patient adherence, the physician needs to assess the patient’s perceived burden of illness and the perceived value (and downsides) of treatment in the context of the person’s age and psychosocial assessment. Based on this assessment, an active agreement of the patient to the therapeutic regimen can be better negotiated. With young people, whether treatment goals are discussed and negotiated primarily with them or with both the adolescent and the caregiver depends on the maturity of the young person and issues of consent, as already discussed. The physician should actively support parents to hand over in stages responsibility for treatment to the young person throughout the adolescent years, while maintaining
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an active interest in the young person’s care. Seeing the doctor alone is part of this progression. Rather than asking parents to remind the young person with asthma to take the asthma medication every day, the respiratory physician may start by checking the adolescent’s knowledge of asthma and its treatment and then provide age-appropriate information to the young person. Providing young people with treatment options can be useful as a way of engaging them more actively in their health care. This allows a negotiation of the treatment plan to achieve specific goals. A review of adherence is encouraged in ways which assume that poor adherence is the norm, for example, ‘‘Many people forget to take their asthma medication as often as prescribed. Are you more likely to forget the morning or the evening dose?’’ Writing down the agreed treatment regimen can be very useful, especially if young people write it themselves. The individualised action plan should be regularly review and revised. Finally, young people need reassurance and positive reinforcement when they are doing well.
CONCLUSION Young people with respiratory disorders should be treated in developmentally appropriate ways in order to improve the doctor–patient relationship. This includes consulting with young people alone for some time and assuring them of confidentiality. Although the assessment of the young person’s psychosocial development is important for young people with acute as well as chronic respiratory disorders, the particular benefits of the assessment of cognitive, emotional and social development in young people with chronic respiratory disease are (1) to help the physician to communicate better, (2) to understand the adolescent patient’s social burden of illness, and (3) to negotiate developmentally and socially appropriately treatment goals. Effective communication with young people has the potential to improve adherence with the treatment regimen and improve the health and well-being of young people with chronic respiratory disease.
PRACTICE POINTS Young people expect the opportunity to talk alone with their respiratory physician (or other health professional) for some of the time. Assurance of conditional confidentiality promotes better communication. An assessment of psychosocial development helps the clinician to understand the young person’s social burden of illness. A consideration of psychosocial development when negotiating treatment goals with the young person is a keystone to improved patient adherence.
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REFERENCES 1. Veit FC, Sanci LA, Young DY, Bowes G. Adolescent health care: perspectives of Victorian general practitioners. Med J Aust 1995; 163: 16–18. 2. Stronski S, Bu¨ hlmann U, Rutishauser C, Michaud PA, Caflisch M. Adoleszentenmedizin in der pa¨ diatrischen Praxis – erste Resultate einer gesamtschweizerischen Umfrage. Swiss Med Weekly 1999; 129(Suppl. 108): 10S. 3. Bichsel M, Esslinger A, Sennhauser FH, Rutishauser C. Confidentiality: what do adolescents expect from doctors? Eur J Pediatr 2002; 161: R13. 4. Akinbami LJ, Schoendorf KC. Trends in childhood asthma: prevalence, health care utilization, and mortality. Pediatrics 2002; 110: 315–322. 5. Eroglu GE, Rabito FA, Srivastav SK. Mortality from asthma in children and young adults in Louisiana. Ann Allergy Asthma Immunol 2002; 89: 191–194. 6. Rutishauser C, Sawyer SM, Bowes G. Quality-of-life assessment in children and adolescents with asthma. Eur Respir J 1998; 12: 486–494. 7. Rice F. Profiles of adolescents in contemporary society. In: The Adolescent: Development, Relationships, and Culture. Needham Heights, MA: Allyn & Bacon, 1996; 3–5. 8. World Health Organization. The Health of Youth Technical Discussions. Geneva: WHO, 1989. 9. Dusek JB. Introduction to adolescence. In: Dusek JB (ed.) Adolescent Development and Behavior. 3rd edn. Upper Saddle River, NJ: PrenticeHall, 1996; 1–15. 10. Neinstein LS. Psychosocial development in normal adolescents. In: Neinstein LS (ed.) Adolescent Health Care: A Practical Guide. Baltimore: Williams & Wilkins, 1996; 40–45. 11. Eisner MD, Yelin EH, Trupin L, Blanc PD. Asthma and smoking status in a population-based study of California adults. Public Health Rep 2001; 116: 148–157. 12. Thomas RE, Thomas AP. Preventing children from smoking. How family physicians and pediatricians can help. Can Fam Physician 1995; 41: 1517–1523. 13. Patton GC, Hibbert M, Rosier MJ, Carlin JB, Caust J, Bowes G. Is smoking associated with depression and anxiety in teenagers? Am J Public Health 1996; 86(2): 225–230.
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14. Glied S, Pine DS. Consequences and correlates of adolescent depression. Arch Pediatr Adolesc Med 2002; 156: 1009–1014. 15. Kashani JH, Beck NC, Hoeper EW et al. Psychiatric disorders in a community sample of adolescents. Am J Psychiatry 1987; 144: 584–589. 16. Kaplan ME. Reciprocal influences between chronic illness and adolescent development. Adolesc Med 1994; 5: 211–222. 17. Patterson J, Blum RW. Risk and resilience among children and youth with disabilities. Arch Pediatr Adolesc Med 1996; 150: 692–698. 18. Cheng TL, Savageau JA, Sattler AL, DeWitt TG. Confidentiality in health care: a survey of knowledge, perceptions, and attitudes among high school students. JAMA 1993; 269: 1404–1407. 19. Ginsburg KR, Slap GB, Cnaan A, Forke C, Balsley CM, Rouselle DM. Adolescents’ perceptions of factors affecting their decisions to seek health care. JAMA 1995; 273: 1913–1918. 20. Nixon GM, Sawyer SM. Urinary incontinence in female adolescents with cystic fibrosis. Pediatrics 2002; 110: e22. 21. Ford CA, Millstein SG, Halpern-Felsher BL, Irwin CE. Influence of physician confidentiality assurances on adolescents’ willingness to disclose information and seek future health care. JAMA 1997; 278: 1029–1034. 22. Reddy DM, Fleming R, Swain C. Effect of mandatory parental notification on adolescent girls’ use of sexual health care services. JAMA 2002; 288: 710–714. 23. Committee on Pediatric Emergency Medicine. Consent for emergency medical services for children and adolescents. Pediatrics 2003; 111: 703–706. 24. Goldenring JM, Cohen E. Getting into adolescent heads. Contemp Pediatr 1988; 5: 75–90. 25. Friedman IM, Litt IF. Adolescents’ compliance with therapeutic regimens. J Adolesc Health 1987; 8: 52–67. 26. Fletcher RH. Patient compliance with therapeutic advice – a modern view. M Sinai J Med 1993; 55: 453–458. 27. Sawyer SM, Aroni RA. Sticky issue of adherence. J Paediatr Child Health 2003; 39: 2–5. 28. Meichenbaum D, Turk DC. Treatment adherence: terminology, incidence and conceptualization. In: Meichenbaum D, Turk DC (eds) Facilitating Treatment Adherence. New York: Plenum, 1987; 19–39.
SERIES: ADOLESCENT ISSUES
Communicating with young people Christoph Rutishauser University Children’s Hospital, Steinwiesstrasse 75, CH-8032 Zurich, Switzerland KEYWORDS adolescent development; psychosocial history; communication skills; adherence
Summary Age-appropriate communication skills help health professionals to engage effectively with young people. These communication skills are a key element for improving adherence with the health care regimen in young people with respiratory conditions, particularly those with chronic disease. Age-appropriate communication skills and assurance of confidentiality enable the clinician to assess the young person’s psychosocial development and to understand his or her burden of illness, which form the basis for negotiating age-appropriate therapeutic goals and strategies. Negotiation of treatment may be the single most important factor that improves adherence in adolescent patients, resulting in more effective health outcomes. ß 2003 Elsevier Ltd. All rights reserved.
INTRODUCTION Treating adolescents, particularly those with chronic respiratory disease, is both challenging and rewarding. Unfortunately, there is evidence that many physicians feel uncomfortable when dealing with young people owing to a lack of adequate training in adolescent health care. Veit et al. showed that 82% of general practitioners in Victoria, Australia, had an incomplete understanding of the developmental aspects of adolescence, 75% had concerns about their own knowledge of and competence in delivering adolescent health care and 91% stated that they had received little or no formal training in adolescent health.1 A recent European study revealed, similarly, that 95% of Swiss paediatricians stated that they had little or no training in communication skills with adolescents, 80% said that they had little or no training in psychosomatic disorders in adolescence and 64% said that they had received insufficient training in how to manage young people with chronic disorders.2 Importantly, Bichsel et al. showed that there was a gap between the expectations of adolescents and their experiences when seeing physicians, particularly with regard to issues of confidentiality.3 Respiratory physicians have the opportunity to improve their adolescent patients’ health outcomes by communicating more effectively with young people. According to some studies, for example, current treatments have, Correspondence to: C. Rutishauser. Tel.: þ41 1 266 78 13; Fax: þ41 1 266 71 71; E-mail: [email protected] 1526–0542/$ – see front matter
despite the availability of highly effective asthma medication, failed to significantly reduce morbidity and mortality in adolescents with asthma.4,5 Part of the reason may be that many physicians do not engage effectively with their adolescent patients.1,2 Communication that takes into account the adolescent’s psychosocial development and is based on gaining an understanding of the young person’s burden of illness is likely to result in improved adherence and thus better health outcomes.6 This article aims: to provide an understanding of normal adolescent development and the potential interference with the treatment of respiratory disorders, particularly chronic respiratory disease; discuss clinical strategies that more effectively engage young people; highlight important aspects of management that improve adherence in adolescents; consider legal aspects of consent in minors.
ADOLESCENT DEVELOPMENT Adolescence is defined as the transition from childhood to adulthood, which includes aspects of physical, cognitive, emotional and social development.7 The period of adolescence has effectively increased over the past century. The longer time spent in education, for example, results in many young people being financially dependent on their parents for longer. The World Health Organization defines ß 2003 Elsevier Ltd. All rights reserved.
320
Table 1
C. RUTISHAUSER
Biopsychosocial development of adolescents
Task
Early adolescence
Middle adolescence
Late adolescence
Age (years)
10–13
14–16
17–20 and beyond
Somatic
Onset of puberty: sex characteristics, rapid growth
Height growth peaks; body shape and composition change; acne and odour; menarche; spermarche
Slower growth; physical maturation complete
Body image
Preoccupation with self and pubertal changes
General acceptance of body; concern with attractiveness
Acceptance of pubertal changes
Sexual
Sexual interest usually exceeds sexual activity
Sexual drives emerge; experimentation; questions of sexual orientation
Consolidation of sexual identity
Cognitive and moral
Concrete operations; conventional morality
Emergence of abstract cognition; questioning mores; self-centred
Idealism; absolutism
Independence
Less interest in parental activities
Continued struggle for acceptance of greater independence
Reacceptance of parental advice and values
Peers
Same-sex groups
Conformity with peer values; increased sexualised activity and experimentation
Peer group less important; more time spent in sharing intimate relationships
adolescence as ‘‘the period ranging from 10 to 19 years’’, and young people as ‘‘being between the ages of 10 to 24 years’’.8 The period of adolescence can be subdivided into early, middle and late adolescence (Table 1). In early adolescence, the question ‘‘Am I normal?’’ predominates. In middle adolescence, the key question for the young person is more often ‘‘Who am I?’’ In late adolescence, the young person focuses more on ‘‘Where am I going?’’ Passing through adolescence, young people achieve a number of adolescent developmental tasks such as the acceptance of their own body, the establishment of sexual identity, finding more mature ways of relating to their peers and establishing emotional independence from their parents and other adults.9 The achievement of these tasks is part of the transitional process from childhood to adulthood. Risk-taking behaviour may be seen as part of normal experimentation by young people in exploring new and different behaviours and their consequences.10 There is good evidence to suggest that young people with respiratory disease experiment with cigarette-smoking as much as healthy adolescents do.11 Experimentation with tobaccosmoking does not necessarily lead to becoming a regular smoker, although young people underestimate the risk of nicotine addiction.12 Occasional risk-taking behaviour needs to be differentiated from regular risk-taking behaviour (e.g. regular substance use such as daily smoking, weekly marijuana or unprotected sexual intercourse). Regular risktaking behaviour is associated with a higher rate of mental health problems such as depression and anxiety and can also reflect poor social competence in young people.13,14 Young people are confronted with numerous physical as well as psychosocial challenges during adolescence, which can cause confusion, insecurity and self-doubt. Despite this, most young people progress through adolescence with few
major problems. In contrast, approximately 20% of healthy young people will experience a greater degree of difficulty in progressing to adulthood.15 Those with chronic respiratory disorders face additional adjustment risks as the presence of a chronic illness can limit their opportunities to engage in the normal tasks of adolescent development (e.g. seeking independence, intimate relationships, academic achievement, tertiary education and work). Furthermore, it is during adolescence that, because of the development of abstract thinking, young people can become more acutely aware of the longer-term burden that chronic respiratory illness and its treatment may have on their current and future life in relationship to increased dependence, reduced autonomy and reduced life choices. In some young people, this awareness can inadvertently lead to a neglect of their health and reduced adherence to therapeutic regimens.16,17 The assessment of a young person’s physical, cognitive, social and emotional development and, in particular, the identification of risk-taking behaviours, can lead to timely interventions that can help young people to think differently about their respiratory illness and their response to it.
CLINICAL STRATEGIES TO ENGAGE WITH YOUNG PEOPLE Many young people perceive doctors as a highly credible source of information about their health. They are, however, commonly reluctant to visit a doctor because of fears concerning issues such as confidentiality, communication or lack of empathy or a perception of the judgemental attitudes of physicians.18,19 For example, a significant percentage of female adolescents with cystic fibrosis suffer from urinary incontinence but feel too embarrassed to talk
COMMUNICATING WITH YOUNG PEOPLE about it with their doctors.20 The assurance of confidentiality and good communication skills may help adolescents to talk more openly and honestly about sensitive issues. Other barriers to accessing health can be clinic opening times, long waiting times, a lack of sensitivity of the reception staff and poor public transport to clinics.
Before the consultation Successful engagement with young people starts well before the first consultation. The young person who enters the clinician’s office should be greeted by the reception staff in an age-appropriate manner rather than being treated like a young child. Waiting areas that have age-appropriate magazines and health education items of interest to adolescents demonstrate that the clinic commonly sees adolescents. If the young person is accompanied by his or her parents, introducing oneself to the young person first, and then the parent’s, emphasises that the young person is an important focus of attention for the clinician.
Who do you consult with? Having time to speak with the clinician alone is well recognised as an important element of consultations with young people. Bichsel et al. showed that 43% of 13- and 15year-old adolescents said it was important for them to get the opportunity to talk alone with their doctor for some time: only a minority was, however, offered this opportunity.3 There are different approaches to starting the consultation. Some physicians prefer to meet the young person alone from the beginning, whereas others prefer to meet the young person with the parents first and then interview the young person alone later. Different factors may help to determine the approach, such as the adolescent’s age and the reason for the consultation, together with the clinician’s and adolescent’s preference. The adolescent may, for example, be asked, ‘‘There are young people who prefer to see the doctor alone; how about you?’’
Communicating what will happen Young people, unlike adults, do not necessarily understand how consultations work. They find it reassuring to be given an overview of the appointment structure, for example the order of history-taking, physical examination and laboratory investigations. If the young person is being seen with the parents first, it is best that parents are informed at the beginning of the session that they will be with the clinician initially and will then be asked to wait outside until returning for a brief ‘‘summing up’’. Clinicians who have known the patient for many years need to prepare both the adolescent and the parents in advance of seeing the young person alone for at least part of future consultations as young people have learnt not to expect it and their parents may feel abandoned without explanation and time to adjust.
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Confidentiality and consent It is crucial to discuss confidentiality with the adolescent patient in order to establish a sense of trust. For example, young people with asthma who smoke may not be prepared openly to discuss this issue with their clinician because of a fear that their parents will find out or because of concerns about the clinician’s judgement of them. Several studies show that adolescents are more willing to disclose sensitive information and seek health care from physicians who assure confidentiality.18,21,22 In the survey of Bichsel et al., 73% of adolescents stated that it was important for them that doctors keep information confidential on request, even with regard to their parents. In that study, however, few physicians assured their patients’ confidentiality.3 If physicians do not talk about confidentiality, adolescents do not know whether their doctor will keep information confidential. For legal reasons, the physician can only assure conditional confidentiality with regard to the young person’s caregivers. This means that the assurance of confidentiality can be provided unless the young person is at risk of serious self-harm or homicide (see the information on legal aspects below). It may be preferable to clarify with the young person that conditional confidentiality is provided with regard to the parents only if explicitly requested by the young person. The legal basis for providing confidentiality to young people, even with regard to their parents, is the right of consent by minors. Most developed countries allow minors below the age of 18 years to consent to medical treatment under certain conditions. An adolescent is generally perceived to have reached sufficient maturity to give informed consent if the physician is satisfied that the adolescent has sufficient intelligence and understanding of the purpose of the proposed treatment and its effects, its side-effects, the consequences of non-treatment and other treatment options.23 In such cases, the physician is able to accept consent from minors without parental consent if the young person refuses to inform the parents or the caregiver of any intended treatment and if the treatment is in the adolescent’s best interests, is well established and is not too complex to be fully understood by minors. Adolescents below the age of 14 years are generally not considered to have reached sufficient maturity. It is obviously important that physicians have a good understanding of their individual country or state laws in relationship to informed consent by minors. Adolescents are commonly reluctant to inform parents about particular issues because of their anticipated negative response. Having informed their parents, however, many young people later realise that their fears were unfounded. Thus, in addition to assuring confidentiality, physicians also have a responsibility to encourage young people to find ways of talking to their parents or other important adults about sensitive issues. An offer by the physician of being with young people while they talk to their parents is helpful for some adolescents.
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Physical examination The physical examination of adolescents does not necessarily differ from that of older patients. However, as adolescents may not feel safe or confident, explaining what will be examined and why can be very reassuring. It is important to explain all findings, including normal findings, to the adolescent given that a key question for many young people is whether their growth and development is normal. Clinicians can usefully refocus this concern in relationship to review visits. The clinician may, for example, wish to review a young person to check that his or her asthma is sufficiently well controlled. In contrast, a young person with suboptimal growth may be more interested in returning to have his or her growth checked. Framing the reason for review in terms of checking both asthma and growth is a technique that prompts return visits. The assessment of pubertal development is an important part of the clinical assessment of adolescents. Some physicians might find it more appropriate to have another adult of the same sex as the patient with them while performing this examination.
Assessment of psychosocial development The assessment of the cognitive, social and emotional development of a young person is one of the cornerstones Table 2
for the successful treatment of young people. One of the interview techniques widely used to assess the young person’s psychosocial development is the HEADSS screen, developed by Goldenring and Cohen (Table 2).24 The basic concept of the HEADSS screen is to start by asking questions about generally less sensitive topics such as family, education, activities and peers and then move on to potentially more difficult topics such as substance abuse and sexuality. The physician should explain to the young person why these questions are being asked as many young people are suspicious when asked highly personal questions. Try, for example, ‘‘I am not just interested in your physical but your overall health so I would like to ask a few questions about how your life is going, which I ask all my patients. . ..’’ Another useful element is for the physician first to ask questions that refer to a third party, which are generally viewed as less confrontational and less judgemental. A physician who wants to know whether a young person with chronic respiratory illness smokes may, for example, do better by not asking the young person directly but by enquiring about the young person’s friends, for example ‘‘Many young people your age experiment with cigarettes. What proportion of your friends smoke? Have you ever tried smoking? How much do you smoke?’’ The HEADSS screen is ideally used as a style of conversation rather than as a list. It is a tool that can be used to engage better with young people and where they are ‘‘at’’ in life. It can
The HEADSS psychosocial screening
Home
Where do you live and who lives with you? How do people get along with each other at home? Who could you go to if you needed help with a problem? Have you moved recently?
Education
What do you like/not like at school? What are your favourite/worst subjects? How do you get along with teachers/other students? Have your grades changed recently?
Activities and peers
What do you do in your spare time out of school? What do you like to do for fun? Do you engage in regular sports/exercise? Any hobbies? How much time do you spend watching TV/playing on the computer? Do you have any friends you can trust?
Drugs
Many young people at your age experiment with cigarettes, alcohol and drugs. How about your friends? Have you ever tried them? If yes, have you ever considered quitting?
Sexuality
Some young people at your age are getting involved in sexual relationships. Have you had a sexual relationship with anyone? What did you do/would you do to prevent pregnancy and sexually transmitted diseases? Has anyone touched in a way that’s made you feel uncomfortable?
Suicide risk and depression
Have you ever thought that life was not worth living? Have you ever thought about/tried to hurt or even kill yourself? If yes, did/do you have a plan how to hurt or kill yourself? When did you last have these thoughts? How do you feel about this right now?
Adapted from ref. 24.
COMMUNICATING WITH YOUNG PEOPLE
identify both risk and protective factors, as well as opportunities for health promotion. Screening should be followed by feedback, reassuring the young person about areas in their life that seem to be progressing well and defining other areas that appear to warrant further discussion. Some physicians might argue that the assessment of the young person’s psychosocial development is time-consuming and beyond their role of diagnosing and managing respiratory diseases. It can be argued that only those physicians with a broad understanding of young people’s social context are able to negotiate management plans that are acceptable to young people. Thus, the use of psychosocial screening can be very cost-effective when it is recognised that young people are far less likely to adhere to treatment regimens that are provided by clinicians whom they do not respect or understand and that are not developmentally appropriate.
Strategies to improve adherence Adherence refers to the extent to which patient behaviour, such as taking medications, following a diet or executing lifestyle changes, coincides with the clinical prescription.25 It is increasingly recognised that poor adherence is a major problem for many patients, including adolescents with chronic respiratory disease.26 It has not been shown that adolescents are less adherent to treatments than adults with chronic conditions. As with adults, however, physicians may do best by assuming, as the starting point, that adolescents are less than ideally adherent. Poor adherence to the therapeutic regimen is usually conceptualised as a patient problem. Some authors, however, argue that this concept is clinically unhelpful as it does not take into account the way in which the doctor–patient relationship has changed over time, the patient being seen more and more as a mature partner who makes decisions based on the physician’s expert advice.27 If one defines adherence as an active and voluntary agreement with the therapeutic regimen resulting in ‘‘collaborative involvement of the patient in a mutually acceptable course of behaviour to produce a desired preventative or therapeutic result’’, as proposed by Meichenbaum and Turk, the responsibility for improving adherence lies primarily with the physician.27,28 In order to improve patient adherence, the physician needs to assess the patient’s perceived burden of illness and the perceived value (and downsides) of treatment in the context of the person’s age and psychosocial assessment. Based on this assessment, an active agreement of the patient to the therapeutic regimen can be better negotiated. With young people, whether treatment goals are discussed and negotiated primarily with them or with both the adolescent and the caregiver depends on the maturity of the young person and issues of consent, as already discussed. The physician should actively support parents to hand over in stages responsibility for treatment to the young person throughout the adolescent years, while maintaining
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an active interest in the young person’s care. Seeing the doctor alone is part of this progression. Rather than asking parents to remind the young person with asthma to take the asthma medication every day, the respiratory physician may start by checking the adolescent’s knowledge of asthma and its treatment and then provide age-appropriate information to the young person. Providing young people with treatment options can be useful as a way of engaging them more actively in their health care. This allows a negotiation of the treatment plan to achieve specific goals. A review of adherence is encouraged in ways which assume that poor adherence is the norm, for example, ‘‘Many people forget to take their asthma medication as often as prescribed. Are you more likely to forget the morning or the evening dose?’’ Writing down the agreed treatment regimen can be very useful, especially if young people write it themselves. The individualised action plan should be regularly review and revised. Finally, young people need reassurance and positive reinforcement when they are doing well.
CONCLUSION Young people with respiratory disorders should be treated in developmentally appropriate ways in order to improve the doctor–patient relationship. This includes consulting with young people alone for some time and assuring them of confidentiality. Although the assessment of the young person’s psychosocial development is important for young people with acute as well as chronic respiratory disorders, the particular benefits of the assessment of cognitive, emotional and social development in young people with chronic respiratory disease are (1) to help the physician to communicate better, (2) to understand the adolescent patient’s social burden of illness, and (3) to negotiate developmentally and socially appropriately treatment goals. Effective communication with young people has the potential to improve adherence with the treatment regimen and improve the health and well-being of young people with chronic respiratory disease.
PRACTICE POINTS Young people expect the opportunity to talk alone with their respiratory physician (or other health professional) for some of the time. Assurance of conditional confidentiality promotes better communication. An assessment of psychosocial development helps the clinician to understand the young person’s social burden of illness. A consideration of psychosocial development when negotiating treatment goals with the young person is a keystone to improved patient adherence.
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