An adult's guide to adolescence

Current Paediatrics (2001) 11, 218d222 䊚 2001 Harcourt Publishers Ltd doi:10.1054/cupe.2000.0171, available online at http://www.idealibrary.com on

An adult’s guide to adolescence M. Shooter Consultant in Child & Adolescent Psychiatry, The Children’s Centre, Nevill Hall Hospital, Brecon Road, Abergavenny, Monmourthshire NP7 7EG, UK KEYWORDS adolescence, illness, compliance, transition

Summary Adolescents who are ill, with a primary physical disorder or a secondary reflection of emotional upset, can behave in bewildering ways. Helping them cope with their illness requires an appreciation of interlocking factors. These include the nature of adolescence and its psychological ‘tasks,’ how the demands of illness affect those tasks, the family context in which this is set, and how the dynamics between professionals can reflect conflicts in the adolescent’s world. The successful therapeutic relationship involves a balance between pairs of opposite considerations*the establishment of trust versus the immediacy of the situation, confidentiality versus the need for information, the taking of risks versus the safety of boundaries, and the closeness of the relationship versus the right to privacy. These issues are examined with reference to four archetypal cases. Questions are raised about the appropriate setting for adolescent care and the transition from adolescent to adult services. 䊚 2001 Harcourt Publishers Ltd

PRACTICE POINTS E Illness may cut across the normal psychological tasks of adolescence and compound their difficulty E ‘Non-compliance’ is not a helpful expression; oppositional behaviour needs to be understood E Passive acceptance can be as much a sign of disturbance as non co-operation E Illness can serve a ‘function’ within family dynamics; emotional recovery may not be simple E Staff need support to avoid replicating family conflicts in their own relationships E Helping adolescents requires specialized training that may best be delivered in specialized settings E Transition to adult services needs careful management, both physically and psychologically E ‘Referral’ to a psychiatrist may frighten the patient and offend the family; psychiatrists work best within integrated teams Even in rude health, adolescents are not the most popular end of the ‘market’. Coupled with chronic illness, they can sometimes seem impossible. Consider, for example, the following cases:

LEROY Leroy is a 14-year-old male in local authority foster care. He has been suspended from school and been cautioned by the police for a string of petty crimes. He has been in and out of hospital many times with insulin-dependent diabetes and presents now in a critical state, refusing (as usual) to co-operate with treatment. The consultant on call wonders about the legal powers available to help the situation.

MARTIN Martin is a 15-year-old male with an inoperable craniopharyngioma, and a ventriculo-peritoneal shunt that often becomes blocked. He is obese, has an irregular sleep pattern, epileptiform seizures, striking motor deficits, and emotional and behavioural problems of increasing severity. Martin says he has had enough of treatment and just wants to die. The parents say he is ‘not in his right mind’. They complain that the many professionals involved have done nothing and threaten ‘to go to the newspapers’.

ADULT’S GUIDE TO ADOLESCENCE

CERI-ANNE Ceri-Anne is a 16-year-old female with a ‘poor appetite’. She has lost 2 stones in weight over 3 months and is brought to the outpatient clinic by an anxious, domineering mother. At interview, Ceri-Anne tells the paediatrician that she was sexually assulted 6 months previously but doesn’t want anyone to know. She has lost contact with her father. Her maternal grandfather, to whom she was very close, died last year from cancer of the oesophagus.

RANJIT Ranjit is a 13-year-old male with moderate learning difficulties and end-stage renal failure. He has a strict disciplinarian father who dotes on his other, healthy sons and has little time for Ranjit. He has already lost one kidney transplant because of his failure to take medication properly. His mother and sister appear to collude in his non co-operation. The hospital staff are split in their reaction to his behaviour. Are these the sort of cases that we all fear but rarely come across? In truth, they are the very stuff of paediatric practice, but they are bewildering to everyone around them. I have heard them labelled, by adults at the end of their tether, as ‘bad’, ‘mad’, ‘sick’, and ‘thick’. That is to say, Leroy behaves in an anti-social way; Martin’s behaviour can look frankly crazy; Ceri-Anne seems deliberately to be making herself ill; and Ranjit is too ‘stupid’ to see what is good for him. Beneath these disguises, of course, they are four adolescents expressing themselves from a typical repertoire of upset. Our task is to see through those disguises, to understand the meaning of their adolescent behaviour, the better to treat their illness in the process. This involves putting together a jigsaw of factors, each piece important in itself but contributing to a holistic picture that is bigger than the sum of its parts.

THE NATURE OF ADOLESCENCE Different adolescents react differently to the same situation. They have different coping styles, different vulnerabilities and different degrees of resilience according to age, gender, temperament, intelligence, peer-group integration and natural novelty-seeking behaviour that owes much to both genetics and environment. But there are features common to all adolescents too. In simplistic terms, these could be seen as unidimensional cut-off pointseof hormonal development, of cognitive thinking or of legal powers. How much of Ceri-Anne’s behaviour might be a reaction to her emerging sexuality? Despite his disabilities, might Martin

219 be struggling with a first sense of the seriousness of his condition and his own mortality? Do he, Leroy or Ranjit have the legal right to make decisions about treatment or should the treatment team take that responsibility from them via parental wishes, the Children Act or mental health legislation? In fact, adolescence is a more complex series of psychological ‘tasks’ around the issues that would be facing anyone of this age. How can the adolescent live with uncertainty as strange things happen to body and mind? How can independence be established amongst adults who have brought them up from childhood and with whom they may still be living? How can the adolescent discover an identity that is distinct from those around him, while at the same time being desperate to be part of the pack? Most adolescents are naturally ambivalent, but they drive adults up the wall as they switch rapidly between opposite pairs of thoughts, beliefs, emotions and behaviours. There is no sense in asking why. The adolescent may be just as confused and terrified by the irrationality of it all.

THE IMPACT OF THE ILLNESS Superimposed on all this, the demands of illness and its treatment might gel with or cut across the tasks with which the adolescent would ordinarily be faced. It is hardly surprising that someone like Leroy or Ranjit, already struggling with the uncertainties of adolescence, might seek to ‘control the uncontrollable’ of diabetes or renal failure on the battleground most readily to hand; at least they can decide whether or not to comply with treatment. How is a 15 year old like Martin to establish any sort of independence as he is bound in ever more tightly to the technology of treatment, delivered by white-coated experts from an adult worldeexcept perhaps by rejecting it entirely? How can a lad like Ranjit find self esteem amongst his peer group when he feels so obviously different, tired, short of stature, and scorned by his father? It may be difficult for Ceri-Anne to express herself directly when words are dangerous, demeaning or disloyal and she is not sure what she wants to say, whom to tell and when. For all of them, their sense of self may be skin-deep. It is easily punctured by the most minor medical procedure, let alone the threat of major illness, the roller-coaster of relapse and remission, and the effects of treatment on mind and body. Small wonder that adolescents may demand an adult say in their treatment one minute and retreat to the level of a child seeking comfort the next. In the face of these dilemmas and the upset they entail, some adolescents will react with active resistance, kicking against advice, biting the hand that feeds them, oppositional and defiant to reason. Others may slump

220 into a passive depression as the world runs over them like a steam roller. The former may cause more problems to ward staff; the latter may be in greater danger, lying quietly in their hospital bed. It is not enough to talk, simplistically, of ‘non-compliance’ or ‘compliance’. We need to know what lies behind the behaviour in every individual case. The oppositional adolescent will need a healthier sense of control. The passive adolescent may need skilled psychological help for their sense of defeat.

FAMILY AND CULTURAL DYNAMICS This inner world of the adolescent, with all its confusion and conflicts, plus the impact that illness and treatment have upon it, have to be seen within the context of family and cultureenot the archetypal family or culture, but this one, in this childeand it may be very different from the families in which staff were raised and which colour their views of what is ‘right’ or ‘wrong’. This requires an appreciation of the inter-relationships within the child’s family, of the roles built on those relationships, and of the mythology peculiar to each family, about illness and the reactions to it. What is the ‘rule book’ handed down in this family from generation to generation about how they face up to crisisefrom everyday events to more cataclysmic illness or even death? Is this a family that shares information and emotions openly and constructively together; or do they remain aloof from each other in their unhappiness, ‘condemning’ an adolescent to a lonely illness? We need to be aware of their traditions and to work at the speed they can manage, not necessarily what we expect. The adolescent is trapped within the family history and the symptoms may only be understandable within it. At the simplest level, for example, Leroy has grown up within an embattled minority and a culture of local authority care, petty crime and educational disillusionment. Somewhere inside all that may be a very fragile sense of self esteem but it is wrapped around with oppositionality that is naturally transferred to the diabetic disease process and those who try to help with it. His refusal to cooperate is a challenge to authority. Who says I have diabetes anyway, who says what will happen if I don’t do this or that, and why should I care? Ranjit is a product of a broader, ethnic culture in which sickness in a son might be derided by a father with healthier sons to glory in, while the female members of the family might be unable to refuse a son’s or brother’s demands, even to the subversion of treatment. More complicatedly, the paediatrician would need to ask what part Ceri-Anne’s anorexia played in the battle for control over her life with a domineering mother, whether the crisis of illness might be designed to bring

CURRENT PAEDIATRICS back an estranged father into her life; and whether her inability to eat mirrors the symptoms of her much loved grandfather’s oesophageal cancer. Or is it a product of sexual abuse, in or out of the family? The first outline of Martin’s family tree reveals that he was a very special child, born after several miscarriages to a father who has already ‘lost’ one son to a broken first marriage and whose own father died when he was around Martin’s age, and for whom he has never properly grieved. How could such a father face his son’s prognosis and all the layers of loss that would carry with it? In such a way we might begin to ask what ‘function’ the adolescent’s illness might have within the family and what bearing that might have on recovery. At the very least, practicalities might dictate that a mother remains in hospital at her child’s side while the father gets on with life with the rest of the family outside. If that is prolonged enough, it is easy for family structures to become permanently distorted. At worst, a child’s illness might divert attention from sorting out stresses within the family system, such as a rocky marriage, and provide the cement that keeps a family together. ‘Getting better’ may not seem wholly positive if it means a painful reassessment of roles or parents falling apart. The pressure to remain ill, subtle or otherwise, may be great.

RELATIONSHIPS WITHIN THE HELPING SYSTEM It is easy for the dynamics within the adolescent’s family of origin to be picked up, reflected and reinforced, for good or ill, by the relationships between different professionals within the wider ‘family’ of the helping system. In so doing, if we are not careful, we may repeat the conflicts that exist between parents over the adolescent and his illness and, in turn, the conflicts within the adolescent himself. In the heat of the emergency, battles may develop between a paediatrician, anxious to begin treatment that might save Leroy’s life, and a child psychiatrist who is reluctant to use the Mental Health Act, or social worker who is reluctant to use the Children Act, as a vehicle to carry therapy through against Leroy’s will. More chronically, professional groups might fracture over Martin’s wish to call a halt to therapy, into those who are anxious to preserve life at all costs, and those working to offer a better deathetwo rival versions of ‘hope’. Ranjit’s family attitudes might be played out again between doctors angry at his unwillingness to cooperate with the expensive ‘gift’ of transplant treatment, and ward staff in day-to-day contact, more sympathetic to his wish for some relaxation in a harsh treatment regime. This is an argument for some form of interdisciplinary forum in which such dynamics can be examined. Staff

ADULT’S GUIDE TO ADOLESCENCE involved in the treatment of adolescents and their illness need support, not simply because they are human too and subject to the same emotions as those they treat, even to the point of burn out, but because they need a chance to disentangle their own needs, in themselves and their relationships with others, from those of the patients and their family.

How to help? It would be nice to feel that help for all this could be reduced to a set of ‘commandments’ but life, with adolescence, is never that simple. Such guidelines are useful in theory but, in practice, the issues, like the nature of adolescence itself, are complex pairs of opposites. The paediatrician is constantly challenged to decide, in any particular child, and at any particular moment, on what side the balance of best interests lies.

Trust versus immediacy It takes some time to develop a relationship with an adolescent of sufficient trust for him to disclose feelings that he may have suppressed for years. Similarly, at the end of the therapeutic relationship, it will take time to disentangle physician and patient from the closeness that may have been built up between them. To that extent, there is a ‘shape’ to the relationship that cannot be hurried. But every now and then, a ‘window’ opens on the adolescent’s life to an issue of such immediacy that there is no time for such trust to be developed. If Ranjit wants to cry at 2 a.m. about his father’s attitude to him, if Ceri-Anne suddenly wishes to disclose that she has been sexually abused, if Martin asks if he is dying, then the nurse listening to them on the night shift becomes a ‘therapist’ for that moment. It is no use putting the adolescent off until they see their consultant or key worker the following day. At the very least, the window may close and an opportunity be lost forever. Whether teams are flexible enough to allow such a shift of roles may be a measure of their quality.

221 that with the team or trusted ‘other’. Most adolescents will find it comforting to know that they will not therefore overwhelm the staff in the same way that they might have done their own family. Secondly, there are statutory obligations that staff cannot ignore. If CeriAnne does disclose sexual abuse, there will be local procedures through which that information must be handed on for local authority and police investigation. Thirdly, of course, the adolescent may be ‘wanting’ the paediatrician to pass on a secret that she cannot bring herself to share directly. It is possible that Ceri-Anne for example, would find it too embarrassing, painful or difficult to confide in an estranged father and unsympathetic mother. Once these limits are explained, the adolescent is free to talk in the confidential relationship within them.

Risks versus boundaries Healthy adolescence is all about taking risks, on the very cusp of development. The families that ‘survive’ it are those sufficiently flexible to allow their adolescents the chance to experiment with their independence in a noncensorial climate whilst being around to ‘pick up the pieces’ when it goes wrong. But there are limits to that tolerance and the good-enough parent will know what rules are sacrosanct within their own house and what behaviour outside it is too unacceptable or dangerous to put up withewhilst still conveying a sense of care. ‘I love you, but I don’t like what you do!’ The same is true for the good enough professional. The sensitive paediatrician will allow a lad like Leroy some leeway in his attitude to treatment, but not to the point of life-threatening danger. We may care for the adolescent and his wish to be rid of his illness and its treatment, but not stand back and allow him to kill himself in trial-by-fate. Sometimes, the most caring act is to take responsibility away from the adolescent for a while through, for example, a Specific Issues Order in Leroy’s emergency situation.

Closeness versus privacy Con6dentiality versus the need to know In order to develop trust in their carers, adolescents will need to feel that what they share is confidential to the relationship; that not even parents may ‘trespass’ upon it. It is a situation in which parents can easily feel left out, hurt or inadequate compared with the ‘professional parents’ on the ward. Their feelings will need careful handling and their own rights respected too. But there are limits to such confidentiality. Firstly, the therapist is human too. If the adolescent unloads something so painful or anxiety provoking as to be impossible to bear, the therapist may also need to share

We have come a long way in paediatrics from the days when clinicians had little idea of, or interest in, what went on in the emotional life of the child and family, and patients had little say in what the clinical teams decided about their treatment. Good quality care now relies on a contract between treater and treatedeeven to the point of sharing lack of knowledge, as much as certainty. In the process, it is difficult to see how an adolescent with a chronic illness can be treated successfully without patients and carers getting to know each other very well. But no matter how close the individual or team may get to Leroy, Martin, Ceri-Anne or Ranjit, we have to remember that we are not, in the last resort, their

222 parents. Perhaps not, in the fullest sense of the word, their ‘friend’. There are many roles that we may perform in their lives, from advocate to advisor to arbitrator of treatment, but we need to be clear about the personal boundaries within which the individual adolescent and his or her family can preserve their privacy.

FINAL THOUGHTS All this involves the finding of a ‘common language’ in which patient and therapist can begin to appreciate each other’s point of view. It involves enough generosity of spirit to allow the adolescent out of the tight emotional corner into which he may have retreated, without loss of dignity. These are difficult tasks, demanding specific skills that rely on more than technical knowledge. Should they be taught to all, or should they be concentrated on adolescent wards staffed by those specially trained in adolescent medicine? Where would adolescents ‘belong’, trapped embarrassingly on a ward of crying babies or, frighteningly, between geriatric terminal illnesses? Psychological and physical factors are inextricably interwined in adolescent illness. Most can be handled simultaneously by skilled paediatric terms; some will need the help of child psychiatrists. ‘Referral’ across the void between services is fraught with problems. For wary adolescents it may be tantamount to reframing their illness as ‘madness’ and, at the very least, they may drop out of contact. Psychiatrists work best within integrated,

CURRENT PAEDIATRICS multi-disciplinary teams where the patients and their families come to know and trust them like any other. As paediatric therapy improves, so more and more adolescents with even the most severe chronic illnesses will survive into adulthood. The transition from paediatric services to adult care becomes critical. But necessary though it may be from a practical and developmental point of view, like everything else to do with adolescents, it is easier said than done. Adolescents may indeed be the unpopular end of the market, but those in contact with them and their illness, whether in general paediatrics or specialist teams, may grow so ‘fond’ of them that it becomes difficult to trust the adult team with their care. The temptation to hold on to Leroy, to Martin, to Ceri-Anne or to Ranjit, despite all the problems that they present, may be too much to resist. Like the natural parents, we have to learn to let go.

FURTHER READING Development Through Life. A Handbook for Clinicians. Rutter M, Hay D (eds) Oxford: Backwell Science, 1996. Lask B, Fosson A. Childhood Illness: The Psychosomatic Approach. Children Talking With Their Bodies. Chichester: John Wiley and Sons, 1989. Eiser C. Chronic Childhood Disease. An Introduction to Psychological Theory and Research. Cambridge: Cambridge University Press, 1990. Klein K, Last B. Paediatric liaison psychiatry. In: Guthrie E, Creed F (eds). Seminars in Liaison Psychiatry. London: Gaskell Publications, Royal College of Psychiatrists, 1996.