Most caregivers we interviewed accompanied their care recipient to medical appointments and communicated regularly with healthcare professionals about care, follow-up, and future decisions. The approach and manner with which professionals interacted with the care recipient and the caregiver often had a big impact in many caregivers’ lives and perspectives on their relationship with professionals. Most caregivers had experienced positive encounters with healthcare professionals, although many caregivers also experienced negative encounters. Several caregivers had an experience with what they felt was a misdiagnosis, wrong treatment, or they disagreed with the approach of the healthcare professional. Several caregivers described how they improved their interaction with professionals over time.
Positive experiences with professionals
The majority of the caregivers we interviewed spoke about a positive interaction with one or more healthcare professionals. In some situations, caregivers continued to be extremely grateful about a professional that helped them through a challenging moment. Fernanda said, “I’ve had some wonderful experiences in which this doctor, when I was at the end of my rope not knowing how I was going to help my mother, and when he said, ‘It’s time. You’ve done your part. Now it’s time for us to do our part.’ I mean, how do I ever, ever, ever thank that doctor for what kindness he showed me?”
Impact on caregiver after negative encounters
Although the majority of the caregivers had positive experiences with healthcare professionals, there were also negative incidents. And as David said, “The problem with negative experiences is that they linger on with you.” Examples of negative encounters most frequently involved doctors who lacked an understanding, painful or insensitive remarks from healthcare professionals, or when healthcare professionals seemed to have unrealistic expectations of what the caregivers should do.
Disagreements on diagnosis and treatment
Several caregivers had disagreements with health care professionals for different reasons. In some cases, it was felt that the care recipient didn’t receive the right treatment or that the healthcare professional didn’t believe or acknowledge what care recipients or caregivers were saying. Caregivers also sometimes felt that their care recipient needed something different from what was offered or provided.
Dealing with disagreements with healthcare professionals is challenging for most caregivers. It sometimes caused anxiety, anger, frustration, and reduced trust. Rachel said, “The woman who works at the MS Society here in BC, who originally diagnosed my mom with ALS, has never really gotten over, I think, the misdiagnosis. She’s always trying to prove my mom wrong in some way. So that has been beyond frustrating.”
The caregivers we interviewed had different approaches to deal with challenging encounters with healthcare professionals. Overall many caregivers tried to find ways to work together with the healthcare professionals to provide the best care for the care recipient. However, on several occasions, caregivers decided not to argue with the healthcare professional even though they disagreed with their final decision.
Most caregivers prepare well when they go to their health care professional. Jacques, for example, has everything ready when he meets the neurologist: “When I get there, I have my daughter’s annual report. The whole year is there with all the remarks. I have been doing this for 10-15 years for sure. It is a big help and I think it is good advice for parents—when you go to the doctor, be prepared.”