Parents typically share disease management responsibilities & meticulously plan their work schedules around them. They keep track of everything using detailed excel spreadsheets & checklists. Many of the parents we spoke to even had basic monitoring equipment such as blood pressure monitors, weighing scales, glucose monitors & so forth in their homes & used them routinely.
Typical disease management tasks include:
- Tracking daily medication intake
- Tracking measures such as weight & water intake
- Maintaining a symptoms diary
- Placing & picking up pharmacy orders
- Setting up regular doctors visits
- Co-ordinating with lab & testing centers
- Attending support group meetings
- Handling insurance issues
The need to feel in control
Teen: “I asked mom whether I can call the pharmacy to order meds, she immediately called them herself.” Mom: “I wanted to make sure we got the order exactly right.
” Many parents are reluctant to let their children perform even simple disease management tasks such as calling the pharmacy. These parents strive for perfection, are over-cautious, & unwilling to “let go” because they aren’t confident in their child’s abilities.
Resistance to change status-quo
Many chronically-ill teenagers also have developmental issues & struggle to manage their medications independently. Over several years of being-taken-care-of, there is usually an established status quo or ritual around taking medications. It’s not uncommon for the parent to physically hand the required pills to the child or for the child to not know the names or quantities of the pills they are required to take.
The need for autonomy & privacy
Chronically ill teens need to feel a sense of privacy & autonomy around their medication-taking schedule. Parents who tried to impose strict monitoring of medication management tasks often got into heated arguments. Many times these arguments are the reason why some teens don’t take their medication at all!