A study by Adelaide Withers, respiratory doctor from Princess Margaret Hospital (PMH), looked at how cystic fibrosis (CF) may impact upon adolescence. Here we discuss the main findings from the study, and how parents can help guide their adolescent through this tumultuous and demanding time.
Puberty and Body Image
Many CF health-related problems become more “visible” during the adolescent years. Unfortunately, adolescence is also a time when teenagers are acutely focused on their appearance, body image, conforming, and comparing themselves to their peers. Self-worth and body image is strongly tied to how well they conform. Any differences from peers can be particularly distressing to an adolescent. Symptoms commonly seen in CF (coughing, flatulence, bowel issues, discoloured teeth from antibiotics, and finger clubbing) are often distressing and isolating for adolescents, especially those that cause visible difference to their peers (pubertal delay, short stature, and low body mass).
Pubertal delay is common in CF, with an average two-year delay in females and one and a half years in males.
How to help:
- Ensure their medical team are aware of any body image issues your teen may be experiencing so they can talk them through any concerns.
- Use an older patient as role model, reassuring that a normal puberty will occur in the near future.
- Offering to allow friends to attend appointments to learn more about CF may be useful in supporting your child.
Risk Taking Behaviour
Adolescence is often a time for experimentation and risk taking. There are conflicting reports as to whether adolescents with a chronic medical condition are more or less likely to smoke, abuse drugs and drink alcohol. Some studies have found equal or greater risk-taking behaviours, whereas other studies have found that adolescents with a chronic illness are less likely to engage in these behaviours. Regardless of these findings, adolescents in general, and with CF, are likely to experiment with smoking, drinking alcohol, and using drugs, especially if their friends engage in these behaviours. Risk-taking behaviours may be tried as a way to conform, minimise differences from peers, and try to forget about the burden of CF.
How to help:
- Unfortunately, explaining how smoking will cause a rapid decline in lung function and lessen life expectancy is rarely useful, as most adolescents do not have the cognitive capacity to understand future consequences as a direct result of their actions. Instead, sensitive discussion using immediate consequences can be a useful strategy; e.g. discussing bad breath and unattractive nicotine staining can be useful deterrents to smoking.
- Regardless of any discouragement, many adolescents will experiment and if they choose to do so, encouraging harm minimisation is essential.
Mental Health
Adolescence itself is a time of great change, and a chronic illness in the mix can render the teen vulnerable to developing mental health issues. Depression and anxiety have a negative impact on health outcomes, adherence to treatment, health-related quality of life, and risk-taking behaviours. Identification of depression and adequate treatment can have a positive impact not only on a patient’s health, but their quality of life and compliance with therapy.
Families who are non-supportive have been shown to be the strongest predictor of poor psychological adjustment in patients with CF.
How to help:
- Family functioning plays a huge role in effective care for an adolescent with CF, so ensure your child is well supported.
- Physicians must be vigilant in screening, detecting, and treating any mental health disorder, as it may significantly impact upon quality of life and treatment.
Becoming Independent
Although older adolescents with CF are on the brink of having to function in an independent manner, the demands of the illness may hamper the process. Parents have the difficult and unenviable task of continuing to oversee medical treatment, while allowing the teenager to develop their own independence.
How to help:
- Gentle and sensitive exploration with the adolescent to tease out fears they may have, and identification of barriers to developing independence is required.
- Acknowledgment and affirmation; “I can see how this would be scary for you”, and identifying supports to assist the transition towards independence are essential.
Non-compliance
Reported barriers to treatment adherence in adolescents with CF include less parental supervision, a wish to conform to peers, not feeling benefits from treatment, forgetting, rebellion, feelings of futility, disagreeing with the physician, and difficulties with time management. In addition, they often have very busy social lives and may not take kindly to the imposition that treatment may bring.
How to help:
- Explore, in a sensitive, non-judgemental fashion, the actual reasons for non-adherence and identify the barriers to change. Explain that some degree of non-adherence and forgetting is normal. Demonstrate to the adolescent that you are genuinely interested in why they do not adhere, as they are more likely to honestly disclose information if they feel that you are working with them and not acting as the “medication police.”
- Involve them in problem solving, setting realistic goals, and allowing some compromise increases the chance of adherence. Acknowledging the high treatment burden and the unfairness of the situation can engender a sense of “solving this problem together.”
- Drawing attention to the immediate consequences of not taking medication can be useful, as emphasis on immediate quality of life is more relevant to the adolescent.
Reproductive Health
Knowledge of reproductive health is often poor in adolescents with CF. Reproductive health includes advice about contraception, pubertal delay, sexuality, avoiding sexually transmitted disease, genetic counselling, and treating low fertility.
In general, patients do not feel comfortable initiating these discussions, and would welcome a physician-initiated discussion and feel relieved when being given “permission” to talk about reproductive health. Parents should be invited to join discussions about fertility if the adolescent consents.
How to help:
- Discussions with their physician about sexuality and reproductive health must occur regularly, with clear and reassuring explanations, no ambiguity and simple language.
Transition
It is well recognised that transition can be an anxious time that some adolescents find extremely difficult. There should not be an expectation that transition must be achieved by a certain age or life event (e.g., completion of secondary school), as transition is an individual process that must be tailored and not rushed. A rough goal is that once the routine developmental tasks of adolescence are complete, transition should occur. The adolescent should be independent enough to appropriately manage all aspects of their medical care, have a clear understanding of the structure of the adult clinic, and have visited the site and met team members.
How to help:
- Providing the adolescent with written material is very useful, such as a “transition readiness checklist”.
- Have your adolescent take a tour of the adult hospital and orientation with a trusted member of the paediatric team.
- Joint clinic sessions between paediatric and adult teams.
- A “familiar face” at adult clinics.
- Information about the new adult hospital.
The Future
Adolescents with a chronic illness often worry about how their disease will affect their future—they may wonder if they will be able to finish school, have a job, have sexual relationships, or start a family. The uncertainty of life expectancy is also a common issue for adolescents with CF. There is often anxiety experienced around what the future may hold for them, including transplant.
Adolescents with CF need to have physicians who are dedicated to addressing and assisting in all areas of health, including medical problems, mental health, reproductive health, and preparation for independent adult life.
Article from RED Magazine, Edition 3, 3017.