Terrence was a co-caregiver with his sister for his mother, who had heart disease. When she ended up needing triple-bypass surgery, Terrence moved back to Omaha to help take care of her while she was out of work and needed some help. He was a younger caregiver at this time, and it was his first experience caring for someone like this.
Terrence considers a part of his own cultural identity as an African American to be taking care of your own, especially your elders. To him, it was unthinkable to put his mother in a nursing home, and he and his sister were passionate about caring for her in a home environment. However, he was not provided with many resources to do so. Everything he learned about heart disease he learned as he went by looking up information himself or speaking to healthcare professionals in his family. No one on his mom’s healthcare team talked to him about being a caregiver.
While Terrence was also unaware of patient advocacy groups while caring for his mom, he thinks they’re a valuable resource. He did not go looking for them, and they were not connected with him, but he believes that timing and approach are everything. If a person you’ve built trust with is presenting you with patient advocacy groups to turn to for help, he believes they would be better received. Someone acting as a liaison at the hospital, like the discharge coordinator or social worker who already works with the family caregiver, would be the ideal person.
Terrence never needed to relate to the resources he was reading in order to get the information he needed from them, but he sees the value in connecting with these resources through a racial, ethnic or cultural background. Diseases more prevalent in the African American community for example, should depict African American people on resources relating to them, and be sensitive to that culture.
Overall, patient advocacy groups should be receiving more support from the healthcare system to ensure they are able to reach caregivers. Currently, these groups tend to focus on one condition, but Terrence points out that if a patient has one condition, they’re likely to get another. Bringing these groups under one umbrella in some way would also be helpful in reaching both the patient and the caregiver.