“ I've been doing this for years so it's difficult to let go (med mgmt tasks), he (teen) is also like "whatever" about it, so we've fallen into this pattern. ” Parent of 15 year old
- Hold themselves to unattainable standards because they blame themselves for their child's condition at some level.
- Feel perpetually burnt out from managing their child's care day in, day out for the last decade.
- Are perpetually anxious about care management tasks & consequences of minor slip-ups, view everything at a granular level.
- Aren't confident in their child's ability to take up care management tasks, have major control issues.
- Think of transition of care as a good-to-have.
“ I wanted to call the pharmacy myself, but mom did it anyway. “ 15 year old
- Lack a clear understanding of their condition & treatment plan.
- Are over-dependant & accustomed to established patterns.
- Compares their lives to other kids in their circle. Would do anything to be like them instead of standing out.
- Find dense information about their condition overwhelming. Some would rather have their parents deal with everything and prefer to be given the meds instead of learning about them.
- May have some resentment toward caregivers & healthcare-providers because they are always telling them what to do and how.
1.Parents spend the majority of their time “caring for” the child in contrast to spending quality time with them.
2.Parents and teens may experience feelings of unresolved guilt or resentment toward one another at stressful times for a variety of reasons.
3.Because both the parents & teens are accustomed to the established status quo, there is a lack of open, honest communication about each other’s feelings.
4.Seemingly trivial issues like a sleepover or school trip often end up in shouting matches between parent and child.
5.It’s common to hear about incidents about these teens becoming aggressive with their parents or care-providers.
The Other Child
To make matters more complicated, siblings of chronically-ill teens feel like their parents have always favored ill brother or sister over them.
Although they love their sibling genuinely, and are happy to help the family in any way they can, they often feel neglected and not listened to.