“Nicholas has significant problems with gastrointestinal symptomatology including episodic retching, vomiting, pain and ongoing severe constipation. We have tried various motility medications and antacid medication with only limited success. His gastrostomy (feeding tube) appears to be utilized to provide between 30-50% of calories when he is relatively well and will provide more calories and fluid when he is having difficulty.” Most of the time, Nicholas was having “difficulty”.
One day, I happened to be at a parent conference listening to a fellow disability Mom talk about her daughter. It was an inspiring speech about inclusion in school and in community. But it was something else that pricked up my ears. This young girl with cerebral palsy had pain and vomiting. After the speech, I rushed up to this mother and explained that our Nicholas had similar symptoms to those of her daughter. "I'll send you some research studies that might help you understand what's happening to your son", she said kindly.
A couple of weeks later, a large brown envelope arrived in my mailbox. Inside was a stack of photo-copied research studies from gastroenterology medical journals. Gold! One of the articles described symptoms exactly like those being experienced by Nicholas. The author was Dr. Carlo di Lorenzo from UCLA, Berkeley. Under the title was his telephone number. Nervously, I picked up the phone and dialled. "Hello, Dr. di Lorenzo", said the deep voice. I had reached the one person who knew what afflicted my child. Excitedly, I explained our situation. "Yes, I can help you, I'm so glad you called", he said. "Hang up and I'll call you right back so you don't have to pay for this call." Two minutes later, the phone rang. Dr. di Lorenzo gave me advice about treatment, about other specialists who could help and most of all, he gave a name to what was happening to Nicholas. Suddenly, I had a lifeboat of information and someone to steer it. I had a plan and I had a guide.
More recently, I became interested in health and caregiver research when I joined the board of the Kids Brain Health Network. KBHN funds research into developmental disabilities including CP, autism and fetal alcohol spectrum disorder to name a few. And my work on the board has led me to become involved in patient and family partnered research. This is such an exciting area and I encourage caregivers of all kinds to ask your doctor about opportunities to get involved if you are interested in participating in studies or in being a family caregiver advisor on them.
I've discovered that there are lots of benefits to participating in or partnering on research projects:
- Sometimes, research can be a way to access treatment, especially if you or your loved one has a rare condition or needs a medication that is not publicly funded.
- Participating in research is a way to give back and support others with the same condition as you or your loved one.
- Some research projects pay their participants and partners.
- Partnering in research is interesting! You get to advise on plain language summaries, evaluate methodologies from the patient/family perspective (7:30am research appointments don't work for sick people, eg.)
- You or your loved suddenly has the attention of a lot of very smart people who are trained in your relevant disease or disability.
- Often, you get to know a fun and interesting group of patients who share your concerns.
- Patients and families can have an important role in WHAT researchers study as well as HOW they conduct research in ways that are responsive to our needs.
- Patients and families can learn a lot about the given disease or disability. Knowledge is power!
This video describes how patients can influence research, but family caregivers are often included, too. And currently, there is lots of research underway into family caregiving looking at what works to help us feel supported at home, at work and in the community.
In Canada, the Canadian Institutes of Health Research describe patient and family engagement THIS WAY. In the US, the Patient-Centered Outcomes Research Institute (PCORI) offers training and opportunities for engagement to patients and families HERE.
So, go on, start by speaking to your doctor and say 'YES' to research. You'll embark on a new learning adventure with benefits!