For the most part, the caregivers we interviewed spoke very highly of the healthcare professionals they interacted with. Still, they had both good and bad experiences. A few had very upsetting experiences that left them with feelings of frustration and anger, and sometimes led them to file a formal complaint. Some felt that particular healthcare professionals had made a wonderful difference in their lives and those of their loved ones. We asked caregivers what advice they would give to healthcare professionals—such as doctors, nurses, managers, and policy makers—based on their experiences. Many of those interviewed suggested that healthcare professionals in general could improve their service by involving the caregiver more and by providing timely information about available resources. Another major piece of advice was to also care for caregivers and make sure that they are well and can continue in their role as caregivers.
Information for caregivers
Caregivers are not always aware that they are actually caregiving and thus do not attend to the consequences in terms of their own healthcare needs. It isn’t always easy for them to find information and support on their own. Medical professionals may often be in the best position to help the caregiver find the relevant tools and resources.
There were simple and practical suggestions about providing information to caregivers, such as placing posters for caregivers in physicians’ offices, having a list of support organizations available for caregivers, but also to take time to help caregivers navigate the medical system or direct them to support groups for caregivers.
Richard feels that when one is sick, two need help. Richard’s physician recognized that he, as a caregiver, needed support and care as well. Similarly, Shayna explains that for every ill person, there is a family member who’s drowning. Ideally, caregivers should be supported too.
Others suggested that health care professionals should provide moral support for caregivers as well and be pro-active with assistance.
Several caregivers felt it was important that medical professionals realize what effect their attitude or approach can have on the people receiving care. Anna’s husband was told continuously in the rehabilitation centre that she would likely leave him now that he was sick, and she found it horrible that people would say this.
Many caregivers suggested that healthcare professionals should remember that patients are still people. Val suggests that homecare attendants should treat patients more like family members. Other suggestions for professionals were to listen carefully to what the patient and caregiver have to say, to be honest, and practice empathy. And as Madhu and Shayna explain, the approach to individual situations should not be ‘one size fits all’; different people and families each have their own special needs. Factors such as people’s religious and cultural backgrounds may bring different needs and expectations into discussions about care and treatment.
You can read more about caregivers’ experiences with the healthcare care system in the Resources section.
Several caregivers stressed the importance of broader recognition for caregiving within our society. They would also like to see more policies in place to support caregivers in their tasks.
Hélène suggested that caregiving be included in educational programs for children so they are more aware and can learn basic caregiving skills.