What do you do when faced with the hard facts? How do you go on after a life-changing diagnosis that you will live with 24 hours a day, maybe for the rest of your life? There may be no cure, but there could be relief – and ways to gain new perspectives.
Mia Berglund, associate professor in care at the University of Skövde, has created a didactic model for healthcare professionals to better support patients. Mia believes that all too often caregivers attempt to tell the patients how they should handle their situation and what medicine or treatment to use.
"But that is rarely a successful strategy. In my dissertation I examine how learning actually takes place. Which factors play a role in assimilating new knowledge? To get through to the patient, you must facilitate awareness of the possibilities and alternatives that are available to the patient, and help her take a proactive approach to the treatment.”
Successful caregiving is not just about fixing what is broken physically, providing the necessary information and then expecting obedient compliance with the treatment. The caregiver also needs to learn to listen to the patient, and support her learning fully.
“It is about allowing the patient to take charge of their life", explains Mia Berglund. “The more the patient actually learns about the disease, the better equipped she will be to handle it, even on an emotional level – which is equally important”.
Being diagnosed often brings with it feelings of guilt and shame, and even fear of the future.
- Guilt that you could have done something about the development of the disease earlier. Even guilt towards relatives from whom you may need more help.
- Shame around others for having been diagnosed, being "labeled".
- Fear of how it will affect your future: in the worst-case scenario, a feeling of helplessness and resignation takes over.
Mia Berglund talks about patients who pretend to have understood the requirements for treatment, but who still do not follow the treatment. One patient simply buried all of the medication in the garden. The longer a person has had a disease, the less compliant she tends to be with what the care provider prescribes.
"I am not looking for patients to become more compliant with the advice from the care provider. The patients are trying to maintain their identity, their everyday life and life as it was before. That is a very natural desire." says Mia Berglund. "My goal is for patients to make more well-thought-out decisions, and receive the support they need to live with their overall situation."
How do you find the driving force in life again, after a life-changing diagnosis? How can the caregiver support the patient in this? Read the second part of the interview with Mia Berglund in our next blog post.