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4 tips for caregivers as communicators: what caregivers should know

Family CaregiverBeing a caregiver requires more than just helping to provide basic needs for a loved one; it often also means being the primary communicator with healthcare profressionals and advocate with community services or government agencies on behalf of the recipient. According to the 2015 report on Caregiving in the US, 63 percent of caregivers communicate with health care professionals, and 50 percent advocate for their recipient. All Care knows the importance of communicating effectively with health care providers and wants you to be prepared when advocating for your loved one’s care. In the post below, Susan Mathena, Patient Navigation Coordinator with Danville Hematology and Oncology, shares best practices when communicating on behalf of another’s health care.

Educate Yourself
Support from family members makes a huge positive impact on the mental attitude and physical well being of the chronically ill.   Family members need to educate themselves on the loved one’s disease to understand the effect of nutrition, exercise and non-prescription medications on the patient’s condition.  Many chronic diseases can develop into acute episodes and crisis when the prescribed medications are not taken correctly or non-prescription medications are given.   Knowing what is expected of the disease and medication side-effects can eliminate trips to the emergency room or panicked calls to the medical provider.

Utilize Resources
The internet can be a great resource or a nightmare for information regarding diseases and what to do about a particular diagnosis.  Avoid websites that are geared more towards advertising for products and services than providing educational information.  Look for websites that have .gov or .edu in the address.  The National Institutes of Health or the Centers for Disease Control is the first place to check for information for ANY disease. These websites will have links to the national organizations for that particular disease.   If you don’t have internet, contact your insurance company.  They are great resources about disease!  Your medical provider should be able to get you the information you need.  All of the electronic medical records have disease information linked to the patient’s diagnosis code. For cancer related resources, view this list provided by Mathena.

Ask Questions
When accompanying your loved one to the doctor’s appointment, keep in mind that the patient should be the primary communicator. Especially if you are the adult child of the patient, allow your parent to ask his/her questions first. Before you go to the doctor, tell your parent what you want to ask.  Ask your parent if they have questions.  Write down the questions and any thing you are concerned about and take this list to the appointment. Don’t be afraid to ask the provider to repeat or write down the “medical’ words.  It is easy to misunderstand the terms.   Ask for a visit summary before you leave the office. (Electronic medical records make this possible!)  If you have educated yourself about the disease, it will be easier for the provider to explain things in more detail.

Make Plans
Understanding the natural course of the disease is the responsibility of the care-giver.  Knowing that, even with excellent care, a chronic disease will progress into end stage is important for life planning.  Accepting the inevitable and even planning for it allows hope to thrive.  That hope for a cure changes into hope for a comfortable life.  Energy spent in denial can be navigated into activities that will provide warm memories. Meaningful conversations can be had when everyone knows that every day is precious. Worries about “what will be or can be done” at the end can be put to rest with honest conversations between patient, doctor and family.  Use of the Five Wishes document can facilitate these conversations.

For more information about communicating with health care professionals regarding someone you care for, contact Susan Mathena, Community Cancer Patient Navigator, at susan.mathena@lpnt.net.

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