We are the Association for CHild and Adolescent Mental Health  or ACAMH for short. And this is ACAMH Learn. Thank you for watching this introduction to addressing the mental health of children with chronic illnesses. My name is Deborah Christie, and I’ve been working with adolescents, emerging  adults, and their families, for over 30 years. I’ve also lived with a couple of adolescents,  so I consider myself a survivor. You already know what it is to be an adolescent, we all do,  but the last time was from that perspective when you were one. Right now, you’re looking at it  from a very different perspective, as a parent, and however hard we try and remember how  we felt, it can be really hard to connect, to really connect with what we went  through, with understanding what is happening to our own children, as they  develop and grow into young adults. So, this video is going to think about  the reciprocal impact that adolescence and chronic illness have on each  other. We’re also going to think about why paying attention to mental  wellbeing matters so much for young people who are living with the additional  burdens and demands of a chronic illness. [Pause] So, let’s start with the biological  changes, changes that happen in the body, and in the brain. Let’s go for the body first.  So, there are three key things that happen biologically as a young person enters adolescence,  and that can be anytime from 11 or 12, it’s whenever puberty happens, so girls start earlier,  boys a little bit later. But the first thing is that their body shape starts to change, and  this is something that we notice more in girls, perhaps, as they start to develop breasts  and their body shape becomes that more curvy, more grownup shape. With boys, we start  to see their shoulders changing and they become wider and taller and stronger  and start putting on more muscle. The second thing is appearance, appearance  starts to change, and that can be things like, their skin, the shape of their face, bodily  hair, or things like acne. There can be some, sort of, negative things that can happen. And the  third bit is the function, what the body is there for starts to change. It’s now the body of a young  adult. It’s now capable of doing what adult bodies can do. And the impact of these biological  changes can be confusing, they can be scary, and they can often be unwanted, and that not  wanting your body to change can often be linked to mental health difficulties. So, for example, with  eating disorders, sometimes the eating disorder is a way of holding onto the body of a child,  rather than developing into a sexual human being. Let’s think about brain changes,  what happens in the brain? Well, around about the ages of 12, all the way up  to 25, or me – maybe even a little bit older, the brain goes from immature to mature. And if  you think about what’s – where your brain is, the connections in the brain start to increase  from the back all the way through to the front. And it’s this part of the brain, this frontal part  of the brain, which, when it’s fully connected, is the point at which we have a mature brain.  And that frontal cortex is the bit that stops us, or tries to stop us, making rash decisions,  or carrying out inappropriate behaviours, but teenage brains often don’t have  that fully connected frontal cortex. The other thing that happens in a teenage brain  is you get an increase in the parts of the brain that are involved in sensation seeking.  Because the frontal cortex isn’t fully formed, adolescents tend to be impulsive. They also  have a part of the brain that starts to grow, which makes them very sensitive to  threat or threatening behaviours, and you can think about how this acts out by what  happens when you tell them off, how they react to being criticised. And the other bit of the teenage  brain is the bit that needs social interaction, so teenagers, adolescents, are actively looking  for social interactions and social relationships. And when you get this interaction between high  levels of sensation seeking, but lower levels of control, you have a critical window, and in  that critical window, between the ages of around 13 to 17, you get significant increases  in exploratory behaviour, or risk taking, which is another word for it. You get an increased  sensitivity to negative consequences, so they, kind of, aren’t aware of what might happen, they  – they’re bulletproof, “It’s not going to happen to me. If I do something risky, even though  my parents tell me that it – something bad will happen,” because of this insensitivity to  negative consequences, they don’t believe that it will happen to them. And, of course, they’re  highly distractible, because this frontal cortex isn’t there, it’s the modulator, it’s the  bit that controls attention and inhibition. So, if you combine all of these things that  are happening in the brain, and all of these things that are happening in the body, just  post-puberty is a key time when there is a significant increase in self-harm behaviours, in  aggression, particularly in boys, in depression, particularly in girls, and things like  substance use or alcohol. There’s also an increase in pain perception, so a clinical  psychology service is very used to seeing an increase in adolescents being referred for pain  conditions. And then there’s also an increase in autoimmune conditions, like Crohn’s or diabetes,  and increases in obesity and metabolic syndrome. [Pause] Let’s think about psychological  changes, what’s happening in the adolescent brain? In terms of cognitive, or thinking,  and, also, how they feel about themselves, who they are. There are three key parts of  identity that start to develop during adolescence, and the first is their personal identity. When  you’re a kid, a child, then you’re just a child, but as you develop into adolescence, you start  to think about who you are. Your adolescent is wondering, who am I? Who and what do  I want to be? This is the point where they start to think about their future, and  what defines them, what’s important to them, what are the clothes that they wear, who  are the people that they want to be with? The second part of identity is gender  identity and gender identity starts to develop sometimes even earlier than adolescence, but in  adolescence, it really starts to define itself. Understanding whether or not you feel comfortable  as the gender that you were assigned at birth, and whether or not that feels and makes  sense to you. And the third is sexual identity, which is different from  gender identity, because sexual identity is about who you’re attracted to, who  you want to be with romantically and sexually. So, those three key differences in development  of identity happen alongside changes in how young people think. So, rather than thinking about  things in concrete, practical, now situations, young people start to develop, in parallel  with the brain changes that we talked about, the ability to think in an abstract way. There’s  a shift from the here and now to the future oriented, being able to see the wood, rather  than just the trees. Understanding long range implications is something that starts to develop,  it’s not just about what’s happening right now, but what could and will happen as a consequence of  the behaviours. So, things like what will happen if I don’t do my homework? What will happen  if I don’t get my GCSEs? What will happen if I don’t get into university? What are the long  range implications? And those are only possible when you have an – a developing, maturing  brain with good frontal cortex connections. And the last change in thinking is about  a preoccupation, a move from preoccupation with their bodies, with sexuality and sex,  which happens at the beginning of puberty, and a movement, as we said, towards an  establishment of intellectual identity, functional identity, understanding and knowing  who they are and who they’re going to be. [Pause] The third change, we’ve  talked about the biological, we’ve talked about the psychological, the  third change is social. For the adolescent, families become less important as part  of a reference group, who you refer to, and this conflict between needing to  belong to a group, but, at the same time, needing to be seen as unique and individual,  really is a dominant struggle of adolescence. Now, peers become increasingly important,  and we talked about this, because of the development of the social brain, but, also,  friendships in childhood shift. In childhood, friendships are imposed, they’re who comes round  with their parents, they’re family friends, they’re cousins. But, as an adolescent, you  start to choose your friendships, family, less important, you make choices on the basis of  what interests you, on the basis of your identity. And peers increasingly influence behaviour,  not always in a positive way. We know that, for example, young people in a car are less likely to  have accidents if they don’t have peers in the car with them. If you have friends in the car, you’re  more likely to make mistakes, you’re more likely to take risks. And the other social changes are  connections with the outside world, social causes, connecting with what matters, paying attention to  what you see on the internet and on social media. [Pause] So, what we end up with,  as a result of these biological, psychological and social changes, are a  set of, if you like, behaviours, a set of criteria that define the adolescent. However,  as a parent, you also have a job description and the adolescent job description and the parental  job description, well, they clash. Adolescents want to stay out late, parents want them at  home. Adolescents want to – tend to forget to let their parents know where they are,  whereas parents want to know where they are. And then there’s trying to fit in with  peer groups. Parents horrified by who they hang out with, adolescents wearing the  same clothes as their friends, parents, “I can’t believe you’re going out dressed like that.”  Adolescents, always on the phone and social media, parents saying, “Put the phone down, tell  me what you did for the day.” Adolescents, deeply irritated by any advice or instructions,  parents, “I know so much, I’ve had so much life experience, I need to give you my advice  and instructions.” Adolescents are deeply private about their bodies, parents  want to check that they’re healthy. Adolescents want to be left alone by their  parents, parents want to spend time with them. Adolescents want to be with their  friends, parents want to do family things, and adolescents worry about the future, but then,  so do parents. Adolescents have to live with mood swings and parents have to live with mood swings,  and all the things that adolescents want to do, like have fun, stay out late, drink  alcohol, parents have to do the clearing up. So, you can see how the biology and the  psychology and the social drive a set of behaviours that can make it really challenging  to be with our adolescents a lot of the time. I want to think a little bit about how  chronic illness has an impact on adolescents. Let’s just think about the impact of  chronic illness on you and your family, as well as the young person who has  the diagnosis. There’s uncertainty, there’s worry, there’s the need to reorganise  roles, there’s the need to take one day at a time. There’s often anger, there are feelings of  grief and bereavement, grief for what’s happened, bereavement for the loss of the future that  you had already worked out. There’s the drive to try and adjust to this complexity, to this  burden, to this condition or illness. Whilst all the time people are telling you to accept  it, it’s not easy to accept something like that, and all of those things combine to  create significant levels of stress. There are different levels and different kinds of  risk factors that will influence the impact that chronic illness, a disease, or a disability,  will have on somebody. The diagnosis itself, the duration the disease or the condition has  existed, the severity, whether or not it has acute and long-term complications, how visible it  is, and whether or not it impacts on the brain’s function, or the cognitive function, the ability  to work, or the ability to do things in school. The other things that can impact are things  like having an effect on personal care, or on mobility or communication, affecting school  attendance and, therefore, affecting performance, motivation, missing out, impacting  on future career and relationships. All of these things can impact on  how people are feeling about this new condition, or a condition that  has been with you for a long time. It’s important to think about the psychosocial  stresses, daily hassles, things that you have to do every single day, in order to manage the  condition. Negative life events, the stress, and how you perceive the stress and, for many,  maternal depression, or maternal distress, can have a serious impact on how well young  people and families adapt to the situation. And often not thought about are the socioeconomic  impacts, where one parent, for example, gives up their career. So, there are things like medical  appointments, daily injections, homeschooling, diet, parental careers, all of these things  are going to create psychosocial stresses. So, let’s go back to our adolescent job  description. Remember all the things that you have to do in order to be a really  successful adolescent. Staying out late, that’s not going to happen if you’ve got a chronic  illness. Forgetting to let your parents know where they are, that’s not going to happen. Trying to  fit in with your peer group can often be really, really affected by illness. Even wearing the same  kind of clothes as your friends can be affected, depending on the kind of illness. Always on the  phone or social media, suddenly the phone may become your lifeline, and if you are irritated  by parents’ advice or instructions without illness, just imagine the impact of  your parents constantly talking to you and telling you what to do, and reminding  you to take your medication. And any hope that you had privacy about your body has  gone out the window, because you have to go to the hospital and be reviewed and checked  and weighed and looked over by a medical team. You’re told about sex, drugs and rock’n’roll  being really dangerous or bad for you and, this time, it’s not just because we’re  grownups telling you, but because, actually, the interaction of all of the different  things that you want to try can make the condition much worse. There’s no chance  to be left alone by your parents now. You want to be with your friends, but  illness can stop you being at school, for example, if you’re not well, or having to go  to hospital visits instead of being at school. And worrying about the future,  well, if you weren’t worried before, now you really are worried. Mood  swings can increase. The need or the want to try things out increases.  The drive because of fury and anger, and these feelings that come along can become  even worse. And the key thing about an adolescent is the drive to become independent and  the impact of illness on achieving that. So, what can you do? What I would  say is, if you are concerned, get help. Nobody knows your young person  like you do, so don’t be fobbed off. The data tells us that one in five children in  adolescence experience depression and anxiety. If you add in chronic illness, then  you’re significantly more likely to develop difficulties with emotional wellbeing,  either on its own, or, and this is more likely, connected to all of the things that you have  to do in order to manage your condition. I want to reassure you that you don’t need  to worry every time that kids feel sad or depressed or lonely. We’ve already talked about  how adolescents can be moody, but, again, trust your instincts. Are they sad, depressed and lonely  all of the time? Have they isolated themselves? Have they removed themselves from interaction  with everybody? So, establish open communication. You do need to check-in, and check-in often,  and you have to validate those feelings. And, most importantly, is keep offering support,  even if it’s not initially wanted, just because they say “No” today doesn’t mean that they  might not say “Yes” in a few months’ time. You need to choose the right strategy. You  need to act. If your child is in danger, you need to act. It’s not about negotiating. If  they’re in a position of hurting themselves or not eating enough, or not coming out of  their room or refusing to go to school, you need to do something. Sometimes you might  just need to listen, but listen to understand, don’t listen to fix, just hear them.  And there will be times when you can negotiate and motivate, but, as  I’ve said, timing is everything. I wanted also to remind you to watch  out for digital activity and social media. This is something we didn’t  need to worry about ten years ago, but now we do. So, make sure that you  have an open communication channel, where you can think about digital hygiene,  can think about digital etiquette and, also, digital safety. And what I wanted to say is,  it’s hard being the parent of an adolescent, it’s even harder being the parent of an  adolescent who is living with a chronic illness. And I want to ask you not to forget the  grandparents. I’m the grandparent of a young man who developed diabetes six months ago.  Even though as a Psychologist I know a lot, and I talk about it a lot, when I’ve  not got my Psychologist’s hat on, it hurts and it’s difficult. So, everybody needs  to be helping and looking out for young people, adolescents, who are developing, who are growing,  and who are also living with chronic illness. I wanted to leave you with one piece of  information, because even though adolescents spend less time with their parents than they did  when they were with children, some research that came out showed that a close and supportive  relationship with parents is an important source of positive self-esteem. So don’t give  up and do what you can and be there, you matter. Thank you for listening, and good luck.