I would really appreciate your help

[anonymous]

I have posted the following message on the teenage/youn people boards but would also appreciate the input of any adults:

Hi, my name is Joanne and I am a PhD student at Liverpool John Moores University. I am conducting a research project on the transition to adulthood for young people with CF. I will be looking at a number of transitions including: transition from school to further education, employment or training; transition to financial independence, transition to independent living and transition from pediatric to adult care.

Through my research I hope to find out what external factors affect this transition for young people with CF. The factors I feel would be important are, firstly the people around you such as family members and friends and secondly, places such as school and hospital. However, I would really like to give young people with CF themselves to opportunity to identify the factors they feel are important. I would really appreciate it if anyone with CF would reply to this message and let me know whether you feel the factors I have identified are ones that would influence the transition to adulthood. I would also really like to know if there are any other factors you feel would affect the transition that should be included in the study.

A later stage of this research will be to carry out interviews with young people with CF. Your responses will be used to help me devise the interview questions. If you want to respond but dont want this to be used in the study you can just state this. Your identities will remain anonymous at all times.

Unfortunately I will not be able to reply to any of your messages as to do so I would need written consent from both you and a parent/carer. You are not obliged in any way to respond to this message but I would be very grateful to anyone who does.

Many Thanks

Joanne

 

[HollyCatheryn]

I think an aspect of support that has not been studied, nor has it been employed in any sort of deliberate fashion, is that of mentorship. I think that many young people with CF have a hard time transitioning from pediatric care and from being cared for to being the primary responsible party in their care, because they have a lack of vision and goals. Many of us (perhaps fewer now) who became adults in the 90's and before had no adults with CF to look to. We were staring down a clock with our life-expectancy written on it. I think doctors are better about not dishing out life-expectancies now than they used to be, but many clinics keep pediatric and adult patients separate. It is entirely probable (especially since the removal of CF camps) that a child can grow through teen-hood and into adulthood without ever having known an adult with CF. Many people with CF quit participating in support groups when they become adults and many parents of teens and adults quit attending also. Because of this, there is a gross lack of support and mentorship for both the teens with CF and their parents.I think that when you are made very aware of statistics and expectations, it can cripple your ability to look into the future and to set long-term goals. By encouraging mentorship from all sides (encouraging families to avail themselves of the adults in their clinic and encouraging adults to connect and mentor younger people with CF as well as encouraging parents to engage and support other parents) you give young people with CF and their families a glimpse into the future and spark the setting of goals. There is so much widom to be gained by learning from someone who has already navigated the myriad transitions of the teen years as well as the intricacies of medical care. These kind of cross-generation mentor-/friendships could help the less experienced to be better consumers as well as better patients. It is difficult for a parent or doctor to impress upon a teen the need to be compliant, even zealous, in their care but it is very different coming from an older person with CF with whom a relationship has been steadily built. Some people would be afraid of witnessing the ups and downs inherent in life with CF, but I believe that knowledge is the basis for understanding and without understanding there can be no wisdom. If a teen sees that their adult mentor is having a hard time (perhaps a decline) it can open up honest discussion about how self-care and compliance can affect the disease progression. It also can aleviate some of the fear when the teen experiences a decline or a dip in health, because they've watched their adult friend go through a dip and how they responded. It can initiate proactivity in teens that would otherwise be denial. I suppose that the direct answer to your question is that in the matter of transitions, strong familial support and well-informed, flexible yet aggressive doctors are paramount. But, they do not replace the unique asset of a relationship with an adult with CF. Institutions, like schools, I think play a relatively small role. It is more about the people within the institutions. Education is our best tool when dealing with people in these institutions. Behind education is the law. It is important to know the law so that you can advocate for yourself when people refuse to be educated. But here again, an established relationship with an adult with CF (and for parents, the parents of an adult with CF) is an immeasurable asset. They can help to determine which battles are worth fighting, how they are best fought and whom they need on their side. Many times it is not just the setting of goals that is affected by CF, but the way in which their achievement is perceived. It is often difficult to look at the many ways in which a goal may be accomplished and equally difficult to weigh whether a goal may be healthy or not. We often perceive that the achievement of a goal as less meritorious if accomplished through unconventional means. An adult with CF can help to adjust the perspective enough to see the options available and to help them weigh the importance of their goal with the need for alternate means of attaining. Sometimes there are factors that ought be considered, but are not obvious to one who has not yet travelled the path. Again, an adult with CF can give perspective on these issues in a way that is much more receivable for most teens than the same input from parents or doctors. Perhaps this will give food for thought to your inquiries and evaluations and to others on this board not only for their own lives, but in answering this query.

 

[anonymous]

I don't have CF, but my sibling did. I think her most difficult & fatal transition was staying at the same CF clinic and moving to adulthood. Around the time she was 18, my mother still went with her to see the doctors. Since they had worked with her since she was a toddler, they continued to talk to mom and handle things as they always had. My sister grew very angry and resentful that she was not being acknowledged and I believe was not as open as she could have been about her health. Communication between her and the medical staff became very strained, although they transitioned to her being the primary decision-maker rather than my mother, I believe the damage was done. My mother did not handle this transition well either and sometimes put pressure on my sister about health decisions. I believe it is critical for medical staff to begin preparing minors to make their own decisions and be able to manage their care.

 

[anonymous]

The same thing happened with my daughter where the doctor would not talk directly to her and she never really forgave them. Her doctor said after she passed away that he was not used to dealing with adults and that he made a mistake not treating her as one after she got older.

 

[anonymous]

I feel a really big factor is your relationship with your doctor & the severity of your disease. My doctor has cared for me since I was 15 months old and we have always been very close. He has even been to our home when I was very ill (on a weekend) and he didn't want me sitting in the emergency room being exposed to germs. I know this will sound silly, but, I have always considered him to be my second father. He has always talked directly to me for as long as I can remember (I am 17) and he has always let me make my own decisions - but, then again my parents always advocated this - my healthcare was in my hands. Last year I told him that I did not want to start seeing a different doctor and I did not want to start going to the adult hospital. We came to an agreement that I had to move on to the adult hospital - but, he would continue to be my doctor and I would not have to change until I was ready. He will continue to see me at the same time the new physician (for the adults) is seeing me - then I will let them know when I am comfortable with the change. I feel this is a very important aspect of my transition into the adult care arena - I have great trust in my current physician and it will take some time to have the same comfort level (if ever) with a new doctor.