Adolescence and Managing Transition to Adulthood and Cystic Fibrosis

http://news.fredericksburg.com/germanna/2013/08/04/germanna-twins-wont-let-cystic-fibrosis-limit-or-define-them/

Adolescence is the stage of development between childhood and adulthood and, for most adults, especially parents, talking about this stage is often accompanied by a groan. The end stage of childhood and the transition to becoming an adult is marked by particular behaviours that almost all teenagers display to some extent or another. It is worthwhile considering what happens during this phase of life that may result in some challenging behaviours for all parents; and, for parents of teenagers with a physical health condition, possibly more so.

In general, the adolescent phase, which is now accepted to be between ten years and about twenty-five years of age, is the healthiest period of the lifespan. During this stage, physical development results in increases in strength, speed, reaction time and immune function, and improved resistance to physical stressors such as cold, heat, hunger and dehydration. Yet, this phase is also marked by an increase in rates of serious injury. So, from the time that parents start to lose some control over their offspring, they hit a worrying period. This is particularly concerning for parents of teenagers who also need to manage treatments or other aspects of their health. This chapter helps parents encourage independence in their teenagers while making sure health is managed well.

There is often an increase in risk-taking, sensation-seeking and erratic behaviour during adolescence. Most teenagers will present some or all of these typical behaviours, but there is still a lot of variation between individuals. Young people with physical illness go through this developmental phase just like everyone else. There may be several illness-related and physiological causes for changes in physical health, but it may also be that behaviours and attitudes typical of this developmental phase are also contributory factors.

Brain Changes during Adolescence

Using the more sophisticated scanning technology that is now available, in the last few years it has been possible to study the changes in the developing adolescent brain and to measure how these impact on behaviour. The major changes in the adolescent brain result in improvements in intelligence and behaviour such that your child starts to be able to act like an adult. These changes include:

•    Development of critical thinking and decision-making

•    Ability to process information faster

•    Development of skills improving thinking ahead and planning (executive functioning)

•    Increased ability to control behaviour by thinking before acting

All of these mean this is the start of your child being capable of looking after themselves, being able to speak for themselves in medical appointments and knowing how to manage their treatments and stay well. After all, your child knows how they are feeling better than you do and so encouraging and teaching them to manage their own health will result in better overall management.

However, the brain takes some time to achieve these end results and, during adolescence, we usually see some increased capabilities, but also some behaviour such as mood swings or acting before thinking, reflecting less mature development. Over many years, the brain undergoes a period of restructuring in order to become more efficient, quicker at thinking, better at organising, storing and ordering information, sorting what is important from what is trivial, decision-making and planning. The young person’s body also grows rapidly in this phase, with vast hormonal changes that determine the rate of this development on an individual basis. There are great variations in the timing and rate of physiological, pubertal and neurological changes among children and adolescents and this in itself can pose problems for some individuals – changing too soon or too late in comparison to peers can be difficult.

While the brain and body are ‘under construction’, we see some behaviour that results in tensions between the adolescent and their parents or other adults. For example, adolescents may believe that they are able to go out independently but will not have thought ahead to remember to take their bus pass. They still need someone to look out for them, but will protest if you check them and accuse you of nagging.

During this ‘transitional’ time, many of the following behaviours are common:

•    Difficulty in interpreting the emotions of others

•    Difficulty in regulating their own emotions

•    Rapid mood changes that do not seem to be warranted

•    Extremes of mood – your teenager won’t just be sad, they will be severely miserable; they won’t just be happy, they will be triumphant

•    An increase in reckless behaviour – acting without thinking through the consequences first

•    Difficulty in considering the long-term consequences of their behaviour because they cannot yet put all the facts together to reason it through

All of the above are perfectly normal when related to the underlying changes that are occurring in the brain. For more detail of these changes in adolescence, it may be helpful to see the TED talk by Sarah-Jayne Blakemore (reference in the Resources section).

For parents of teenagers with a physical health condition, some of the risks your adolescent may take may include those that affect the management of their illness, which could potentially have a significant effect on the young person’s health outcome in the long term. Supporting your child from childhood to adulthood is difficult enough, but when you have to negotiate handing over managing treatments to your teenager, it introduces an additional set of worries.

Responsibility and Decision-making around Treatment

As your child gets older, they will gradually become more involved in decision-making and will have more responsibility over their treatment decisions. At some point, your child’s healthcare teams may recommend to you that you start to hand over managing treatments because this is now ‘age-appropriate’. While you know that at some point you need to do this, you also know your own teenager better than anyone else and, although they may look like an adult, you may feel that mentally and emotionally they are not ready to manage their treatment independently.

From fairly early on in their childhood, it is important to make a note to yourself that one day they will have responsibility for looking after themselves. It might be useful to bear in mind that you have a few years to be able to ‘train them up’. As with all transitions, this is a process rather than a one-off event, so it is best to start the process gradually and accept it may take a while to achieve before your teenager can take over full responsibility.

One of the biggest fears that parents of teenagers with medical needs have is that their child won’t manage their care to the same standards that you have achieved up to this point. You know how much time, effort and worry has gone into keeping them well. For this reason, you may feel you can’t yet bring yourself to hand over full responsibility to your fifteen-year-old son or daughter. You may already have bad memories of previous occasions when they made errors or were not able to assess how ill they were.

But it is important to remember that sticking to a treatment regime can be a problem at any age, and people with long-term health conditions (and even those of us without!) often make choices not to follow a prescribed treatment plan, or to change the plan, without informing the doctor or prescriber. These choices can be based on many different factors, such as:

•    Considering our own judgement about the necessity of the treatment to be better than that of the person who prescribed it

•    A lack of understanding of how the medicine should be taken

•    Poor quality of information or explanation from the healthcare team

•    The impact of the medicine or whole treatment package on daily life – for example, it may be too time-consuming, conspicuous or complex

It is worth considering whether any of the above reasons are relevant, so that you can address the underlying reason for your adolescent’s choice, if necessary.

Handing over Treatment Responsibilities

To begin handing over responsibility for treatment to your child, it is worth starting the process with something they are most likely to find easy to achieve and gradually work up to them taking full responsibility. It can be helpful to think of this as a gradual or phased approach.

Phase 1 – Steps to Teach Your Child to Manage Their Own Treatment

1.   Choose an easy medicine or treatment that you know your child can already manage, e.g., swallowing a tablet.

2.   Tell your child that you have noticed that they do it well and so you don’t have to be responsible for that medicine these days.

3.   Tell your child that they can be given responsibility for it. You will check in case it is forgotten.

4.   Initially be available to remind them if necessary.

5.   Once they routinely and reliably take the medicine, leave it to them.

6.   Occasionally say that it is great they can look after that medicine.

7.   Think of any other aspects of their treatment regimen they could now take responsibility for.

The most successful way to implement this is to start before your child becomes a teenager, when you as a parent are more influential and they are less focused on other factors, such as what their friends think and fitting in with their peers.

Understanding Adolescent Motivation

Returning to the maturing brain, we now understand that one of the aims of brain restructuring is to develop skills in organising, planning and being able to forward-think to get things ready (called ‘executive skills’). As an adult and a parent, you will be familiar with all the tasks you need to put in place in order to get everyone ready for school and work in the morning. Now consider how much of that you think your teenager can do. They are likely to be capable of some but not all of the planning and preparation needed – and, of course, this varies according to individual rates of development. As an adult, you are capable of planning, thinking ahead and assessing the requirements of tasks and the time needed to succeed, and can then ‘think backwards’ about when to begin.

You are motivated to do this because you can see the benefits of the outcome you are working towards (e.g., not being late for work) and can plan your behaviour to avoid the pitfalls. Teenagers aren’t able to do this yet because their motivations are different from yours. Their stage of brain development means they are more focused on immediate reward (such as extra time in bed) and less concerned with taking risks (getting into trouble or missing treatments).

Some of the rewards for an adolescent with a physical health condition are likely to include:

•    Being the same as their friends – a strong desire for peer identification

•    Excitement from exploratory (risky) behaviour – smoking, alcohol use, not doing treatment

•    Relationships with friends and emotional separation from parents

•    Exploring their identity and trying out different behaviours – who am I and what will I become?

Challenges for the Adolescent with a Physical Health Condition

As a result of your child’s illness, they may need to attend clinics, have regular treatments that may be complex and conspicuous and sometimes may need to be admitted to hospital. They may have a reduced physical capacity compared to their peers and be reliant on parents and healthcare professionals. All this comes at a stage of life when they are more motivated to seek out rewards and to avoid anything that gets in the way of this, alongside a strong need to be like their friends. This may result in challenges in many areas, including:

•    Not being able to be as autonomous as they would like

•    Personal identity – are they a normal person who is sick or a sick person trying to be normal?

•    Social maturity – has the impact of the condition reduced their ability to socialise and have friendships?

•    Sexuality and relationships – are these affected by the illness?

•    Educational and vocational choices – has the illness or missed school meant that they haven’t realised their potential?

Support for the Teenager with a Physical Health Condition

You need support and education, too! Most healthcare teams will offer support to parents about managing the teenage years and, specifically, how to begin to hand over control to their child for managing the condition and treatment. Because of the risk that your teenager will not manage their own health as well as you have done, you may need reassurance and guidance over how to begin this process. This is part of understanding the changes in your relationship with your child as you move from the parent of a child to the parent of an emerging adult.

Although earlier in this chapter (in Phase 1), we discussed some strategies for encouraging responsibility for simple medical tasks, sometimes teenagers are reluctant or unwilling to take responsibility for their treatment. The following is a very typical exchange between parent and teenager in most families. In this example, the teenager, Nick, is fifteen years old:

Mum:   Nick, come in here and do your [nebuliser/inhaler/injection/physio . . . any required treatment].

Nick:    [Silence, no response.]

Mum:    Nick, I said come and do your [treatment].

Nick:    [Mumbles.]

Mum:    NICK!!!!

Nick:     GET OFF MY CASE . . . SHUT UP . . . LEAVE ME ALONE. I’LL DO IT WHEN I’M READY!!!!

Mum:    [Silence.]

This scenario may be repeated in similar ways – it might have several more rounds of mum shouting before she gets an abusive response from her teenager – but it ends in a very unsatisfactory way on both sides. And yet, it may also be repeated day in and day out. What happens is this:

1.    Mum sees the time is ready for her son to do his treatment, so she calls out to him. Nick is busy communicating with his friends in his bedroom on his laptop, so his mum shouting feels like an attack: ‘Turn off the computer and do your treatment . . .’ Nick feels punished.

2.    In response to feeling attacked by mum, who is preventing him from continuing his rewarding activity of speaking to friends, he ignores her.

3.    Any behaviour that is ignored always results initially in us trying again. Mum applies her ‘attack’ once again, and shouts louder.

4.    Nick chooses this time not to avoid but to attack; he shouts back, louder and abusively: ‘Stop going on . . . you are always getting at me . . . I will do it LATER!!!!!’ His mother feels punished herself, and either attacks back with increased anger or walks away.

5.    Mum will either continue in rounds of further shouting or will retreat. Mum removing her instruction to do the treatment has worked for Nick, as he gets to continue speaking to his friends.

6.    Mum has inadvertently taught Nick that when she calls for him to do his treatment, if he shouts enough at her, then she will not make him do it. This sequence of events is a trap that it is very easy to fall into, and all parents do it at times.

How to Encourage Responsibility in Your Teenager

Once you know that your teenager is aware of everything they need to know about the treatments they require, what you as parents want from them is to be able to trust that they will look after themselves well. The following gives some ideas about how to encourage trustworthiness in regard to looking after their own health and managing treatment requirements:

Phase 2 – Steps to Encourage Trustworthy Independence

1.    Reward – teenagers like rewards! One of the most valuable rewards of this stage is some freedom. A sleepover, going to the shopping mall/hanging out with friends, going away for the weekend, going to a festival.

2.    Rules – there is no way you are going to allow this level of freedom without you knowing you can trust your teenager to take some responsibility. So you set clear rules, set up some training and tests: ‘If you can show me for the next week that you can take your injections, then I will consider letting you go.’

3.    Risk – you as parents take the risk first. Once you have set up clear rules and training, you let them have a go. But you are ready with your back-up plan. You will have thought in advance of everything that could go wrong and have in mind what will have to happen if this is the case.

4.    Rescue – it is not the end of the world if your teenager needs some extra input managing their condition after they have had their freedom. Rather than taking back control, just renegotiate your rules for next time (e.g., ‘Next time you have a sleepover you need to bring forward the time of your injection, so do it before you go and I know it has been done.’)

The Role of the Healthcare Team and Transition from Paediatric to Adult Healthcare Services

By the time your teenager has reached seventeen years of age, it is important that the healthcare team help you and your teenager in managing the transition from childhood to adulthood and also from a paediatric health centre to an adult health centre. It may be that your teenager has good relationships with the adult healthcare team already but, if not, it is worth suggesting that they find the time to have a talk with one of the team at a routine appointment on their own. Of course, adolescents are notoriously private, and they don’t like to disclose their innermost thoughts, especially to adults who are relatively unknown to them. But if they aren’t offered this opportunity, they are unlikely to request it themselves.

This includes always ensuring confidentiality. This may be of concern to you, but remember, this is in the context of enabling your teenager to become a responsible adult managing their own healthcare. Importantly, if healthcare professionals have concerns that someone is at risk or is being harmed, they must then break confidentiality in the interests of the child. In reality, this isn’t usually necessary because the healthcare professionals will try and work with your teenager to find mutually agreed ways of being able to include you in anything they think you should know, even if no risk is involved.

In the same way that transferring responsibility for health-care management from you to your teenager strikes you with fear and trepidation, many parents feel the same about moving care from a well-trusted paediatric health-care team to a new adult healthcare team, quite possibly in a different hospital or location. Paediatric centres should now all have transition policies and practices, and it has been a goal for the NHS to require paediatric centres to achieve set transition standards. The detail of the transition policy and practice may vary depending on location and on the medical condition.

The first requirement for transition to occur, not surprisingly, is the existence of good, adequately resourced services in an adult healthcare setting. The second requirement is that transition is accepted as a process, not a single event. Transition should begin several years before the age (usually sixteen or seventeen years) at which a person has care transferred from one centre to another. There must be time for the young person, their family and the new healthcare team to get to know each other. Again, this will vary depending on the type of medical condition and health needs.

Some long-term conditions have well established packages of care which are mostly delivered and reviewed in an outpatient clinic. Some conditions will be more unpredictable than others, and the decision to transfer care may be based on the stage of the illness or the resources available at an adult centre. However, in general, the most appropriate care for an adult is within an adult centre, as paediatric centres do not normally have the experience or knowledge – or sometimes even the resources required – for medical investigations or surgery to manage medical conditions in an adult patient. They are therefore often unable to offer emotional support or deal effectively with adult lifestyle concerns.

There are some agreed aspects of transition that most paediatric healthcare teams follow in collaboration with the adult services transitioned to, and these are often referred to as ‘standards’:

1.    Transition must be a collaboration between paediatric and adult centres. You and your child need to know that the paediatric team know the adult team and share the same standards in the delivery of care.

2.    Psychological and practical preparation should be provided from the paediatric team well in advance of the moment of transfer of care. Most paediatric centres recommend that discussions about eventual transition start at about thirteen or fourteen years of age.

3.    It is important to begin preparing your child early on to be more independent so that they can cope when they transfer to an adult centre. This will mean supporting your child to understand their medical condition and treatment needs. It might also include knowing how to monitor drugs at home and how to re-order them from the pharmacy. This is not because you will disappear, but, while you are there as a ‘safety net’, you can pass on your skills and knowledge.

4.    Your teenager will need practice at being able to speak up for themselves in medical consultations. Even if they still need some support to do so, it is important that they are treated as the central, most important person in the consultation. For some teenagers, this might mean attending the whole or part of the consultation alone.

5.    The paediatric team must be careful not to show a bias for one adult centre over another (if there is a choice). They must respect the rights of the teenager, offer guidance and support, discuss the future, provide information about the adult services, and facilitate the move both practically and emotionally.

6.    At the most basic level, you and your teenager should expect to receive an information pack from the paediatric centre which will also include information on adult services if there are some that are well known to the paediatric team; attend joint paediatric and adult clinics which are normally held in the paediatric centre with a team from the adult service attending and seeing the teenagers alongside their paediatric colleagues; make informal visits to the adult centres and the adult team should be available for you and your child to speak to prior to the actual transfer of care.

7.    The process includes:

*    Raising the issue of transition early

*    A flexible approach to age of transfer

*    Promoting some independence in the young person – for example, being seen alone at the start of the appointment by the healthcare professional

*    Discussion and planning with the young person and family

*    Liaison between paediatric and adult team members

*    No further contact with the paediatric centre after the final transfer

8.    Finally, transition should become a normal, expected practice.

Key Points

•    Adolescence is a time of great change physically and mentally and it is common for young people to take more risks during this phase of development.

•    Adolescents may not fully accept the consequences of the importance of sticking to a treatment regime to prevent future illness or complications – they may either not be motivated to do so, or may not consider the risks in the same way an adult would.

•    They will be more likely to ask ‘What would my friends do?’ rather than ‘What would my parents/doctor/nurse do?’

•    Handing over responsibility to your adolescent should take place over several years and is a gradual process.

•    Encourage your adolescent to see a member of the healthcare team on their own.

•    This can be an anxious time for parents, so you may also need support in managing this.

•    The transition process from child services to adult services should start well before their care is transferred.

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