We talk about patients, but caregivers (or “carers” to our British friends) are also important. In some disease categories, such as Hemophilia, Lennox Gastaut Syndrome, and Spinal Muscular Atrophy, where many of the patients are under 18, caregivers (usually parents – and most often mothers) are the majority and are often the key respondent group for research. This is also true in categories where the disease is particularly debilitating, such as Huntington’s and ALS, where the caregiver is most likely the spouse.
However for many categories where the patients are adults, such as Cancer, Multiple Sclerosis, HIV, etc., we receive a lot of requests for caregivers in addition to patients. And we find there are some myths that need debunking:
Myth 1 – Every patient has a caregiver
Reality – Many patients don’t have caregivers. We hear all the time from patients who say, “I am my own caregiver.” A single 55 year old female MS patient may just not have a caregiver.
Myth 2 – Caregivers are more likely to respond than patients
Reality – Especially among our cancer patients, we find the patients more likely to respond than caregivers. Even when a study will take patients and caregivers who are connected, caregivers will tell us, “I won’t have anything to add,” even when our clients do want their point of view.
Myth 3 – Caregivers are as involved with the disease and treatment as the patient
Reality – Many “caregivers” are not nearly as involved in their patient’s treatment as the patients. They may go to some appointments, but they aren’t as knowledgeable about the treatments as the patient.
Myth 4 – For stage IV cancer patients, you need to go to the caregivers
Reality – We do much better recruiting stage IV cancer patients than their caregivers. These patients tell us they feel they are contributing to those who will come after them, and they appreciate the opportunity. So don’t just include caregivers if you think you can’t get the patients – let us get the patients for you.
Gender plays a role as well. We find females to respond more than males – sorry, guys. This means, getting caregivers of breast cancer patients (often male spouses) can be difficult, whereas getting caregivers of prostate cancer patients (usually their wives) is more feasible.
So remember to include caregivers where appropriate, but don’t assume they are always a substitute for patients.