Dr Lesley Edwards Recognising and managing distress and anxiety in teenagers and young adults with cancer Dr. Lesley Edwards, Consultant Clinical Psychologist, The Royal Marsden NHS Foundation Trust

Dr Lesley Edwards Engaging teenagers and young adults Approach is crucial, Can be faced with flatness, not interested, parents rather than TYA talking Informal, non jargon, as part of the team, not necessarily because there is a problem. Needs more engagement visits to get on board. Recognition that it is often the person rather then the role, who clicks best? Importance not to take rejection personally, be available for indirect work/consultation/work with parents rather than TYA Flexibility, thick skin, sense of humour, friendly, but not a friend. Boundaries very important with this group Try and see it from their point of view What about the rest of the family?

Dr Lesley Edwards Putting it into context Clinically significant distress ( including depression and anxiety recognised in 15-50% patients (Gessler et al 2008, ) NICE estimates 50% of all patients experience anxiety or depression at some stage in their cancer journey. Is anxiety and distress unnoticed, or seen just as ‘normal’? Why is it missed? Evidence that treating anxiety & distress can improve treatment adherence and even reduce medical costs (Bulz 2005) and improve communication Use of screening tools/psychosocial assessment Adjustment Remember never too late to get help What do they actually know? Information given is crucial to minimise distress

Dr Lesley Edwards Distress and anxiety What would be normal and what is considered a problem, Who thinks there is a problem? Staff/patient/family Who to see in the family Psychosocial support is offered by all staff, does not have to be psychosocial professional Where are they in the disease trajectory, expect to have issues at diagnosis, commencement side effects/end of treatment etc. at developmental milestones What kind of distress, procedural, adjustment, existential, identity

Dr Lesley Edwards What are they worried about? Cancer, seriousness of it, can it kill them? Friends, will they be left out, social relationships Will it stop my chances of a relationship Appearance Identity, who am I Fertility/sexuality Guilt of surviving Impact on family Future Be prepared for anything Lack of motivation/lack of initiation/fear of starting anything

Dr Lesley Edwards Who to talk to Who would the TYA usually talk to, is this support still what they need? Friends/family/counsellor Other TYA with cancer/support groups CLICSargent/nurse consultant/CNS/psychological medicine/TCT Youth Support Coordinator If patient/family/staff feel they can not cope to refer to psychosocial team: psychosocial team all can advise and refer Outside agencies, spiritual/religious leaders Local/shared care hospital /local Child and Adolescent Mental Health teams (CAMHS) Adult Community mental Health teams (CMHT depending on age) Websites Click4tic,teenage cancertrust,2bme, grouploop

Dr Lesley Edwards Signs of distress and anxiety verbal Fears ( new/obsessional, extreme, may or may not be related to cancer) Scared/anxious, Seemingly not affected/denial/avoidance Talking about suicide/ideation and intent Obsess ional thoughts, earworms Verbal diarrhoea versus stopping talking Talking just as you are leaving the room (foot in the door)

Dr Lesley Edwards Signs of distress and anxiety non-verbal Acting out behaviour… I might as well go and… Risky behaviour Anger Aggression often targeted at a particular individual Sleep disturbances, sleep deprivation major problem as can become chronic Eating problems (change in pattern, too much too little Crying/sadness Running away, non compliance/turning away

Dr Lesley Edwards Protective behaviour Being a parental teen/young adult, protecting others roles, looking after others often deflects concern about self Protecting siblings Protecting staff. If problems with boundaries, scared of upsetting staff, stop TYA from talking

Dr Lesley Edwards Suicidal thoughts 3 levels of danger : 1. Talking about it 2. Taking risks 3. Planning and doing it Not about whether to take seriously but what action to take, never deny the intensity of feelings. To explore what is going on, why and what…

Dr Lesley Edwards Danger signs Flat affect ( how the child appears, chronic distress, no enjoyment of life, needs help) Change in performance/subtle/change in family relationships Stopping social contact Remember stress signs show slowly, build up, creep up on everyone Sleep problems Eating problems Extreme/new fears Aggression Risky behaviour/suicidal ideation Overwhelming feelings of inability to cope

Dr Lesley Edwards Distress thermometer

Dr Lesley Edwards What questions to ask Open ended Get to know TYA/family first before launching into problems Keep meetings manageable, ideally never more than an hour, stop when they give off signs (look for non verbal cues, NEVER outstay your welcome) How is it all going? “you seem really sad… would you like to talk about it” Is there anything you would like to talk about? Talk whilst doing something, playing a game, on the internet, modelling plasticine, drawing How would I know you wanted to talk? What do you do that helps? What do you really enjoy? Who can you talk to? What kind of questions do you want to ask? Are you worried about anything? DON’T sum up too early, check it out, if you get it wrong you can alienate TYA

Dr Lesley Edwards What to do Offer support Drop by ( bur not so much they feel stalked. importance of balance) Get a rapport going Ask if they would like to have someone to talk to confidentially that could help them with what is happening Discuss not only talking therapies, but importance of physical releases if activities, punch bags, smashing bottles, exercise, whatever works Get them to think what they would advise if one of their friends was going through the same thing Listen without interrupting, use good communication skills Refer on if they are stuck, clearly depressed or unable to comply with treatment Consider the role of medication, which can really help Ensure they have the information they need, i.e. what to read, who to talk to, websites, telephone numbers etc. Remember the whole family

Dr Lesley Edwards Case example Sam 15 year old, 3 years from transplant for ALL, year 10. Medical problems, ongoing pain/joint problems, lots of viral illnesses, many absences from school. Social anxiety, scared of peers, who am I,I do not fit in anywhere, mum overprotective, enmeshed relationship Social isolation, terrified relapsing Survivor guilt, the only one of her co-hort who had survived. Sword of Damocles, living with uncertainly HOW TO LIVE LIFE AFTER TREATMENT, TERRIFIED BY EVERY CHALLENGE, SOCIAL WORLD SHRINKING, WHO AM I?

Dr Lesley Edwards contact Dr Lesley Edwards Consultant Clinical Psychologist, Royal Marsden Hospital, Downs Road, Sutton, Surrey SM2 5PT Tel