The Unspoken Few: The Role of Families in Migraine Care
Fiskvik Boahemaa Antwi, RN, MN(c), Coordinator for Nurses’ Lifestyle ReDesigned.
Simon Akwasi Osei, RN, MN(c)
“I am sorry, I have to call in sick today.”
“I am sorry, I cannot help you with your homework today.”
“I am sorry, I cannot cook dinner today.”
“Once again I am sorry. I have an invisible illness; you might not understand.”
As a migraine sufferer, these are the words you speak, often times known as “excuses” to the world. Your excuse to not go to work, to not bond with your kids or to not make dinner. Perhaps, you are stigmatized of being lazy or merely exaggerating your pain.
A study was conducted by Buse et al., (2016) explored the burden of migraine towards families in terms of relationships and family activities. The study revealed that there is an increase of family burden due to chronic migraine. Migraine caused a decrease in attending and participation in family activities. Additionally, it caused financial constraints. One major aspect I want to highlight from this study is that migraine patient’s family members do not believe the severity and impact of migraine.
Migraine has been seen as an invisible illness. Among the health care professionals, migraine is underestimated and undertreated due to the perception and stigmatization. However, there is a growing epidemic of migraine patients worldwide.
I once spoke to a migraine patient who said, “I am living in the shadows. My family do not understand me.” Pain affects quality of life; migraine puts one in isolation. Pain becomes the central focus in the life of patients with migraine. This therefore affects all aspects of life and activities of daily living. Families play a pivotal role in the care of migraine patients. That is providing support.
However, families are not able to provide the substantial support due to lack of knowledge. Therefore, there is a need to extend migraine education to patient’s families as well. Families are often neglected in patient’s plan of care, underestimating the impact that migraine have on family. It is crucial to understand that when a patient is discharged, care is handed over to the patient and the family. How can families be involved in patient care if they are not educated about the illness they are caring for?
The Role of Health Care Professionals
As a registered nurse, my advocacy is providing awareness towards health care professionals on the problem of migraine care. This calls for health care professionals to involve family members in migraine patient’s care. That begins with education. It is important for health care professionals to assess the learning needs of both patients and families; and address them accordingly. Secondly, health care professional should educate the family on their role in the treatment plan. This gives them a voice and an opportunity to feel part of the care.
The Role of Families
Do not Doubt (Be Supportive)
Do not doubt the severity or the impact of the pain of the patient. Be supportive, be a listener, be a comforter. People with migraine are faced with isolation due to their pain. Your role is crucial.
Educate yourself about migraine disorder through research, asking questions and going to appointment visits with relative. It is important to educate yourself to better understand the illness and become supportive figure.
Be Involved in the Treatment Plan
Understand the treatment plan of the migraine sufferer. Do not provide advice that is irrelevant and not medically sound. However, listen to the patient’s need and the doctor’s orders.
Be an Advocate
Migraine has been known as a “forgotten epidemic” according to the WHO. Hence, advocating and spreading awareness of migraine burden is an important role that you should embrace and practice.
There is a need for families to get involved in the care of migraine patients. However, it is the role of health care professionals first to understand the importance of educating families as much as patients about migraine. Secondly, families should be involved by being supportive, educating themselves and becoming an advocate.
POEM: SILENCED PAIN
For years your pain has been silenced,
Trapped inside your head.
You are known as a pain statistic in research,
But just a global problem.
Now you are placed in a state of isolation
Where the health care professionals you trust, even so, underestimates your pain.
For years your pain has been silenced
And it’s time for your pain to be understood.
By: Fiskvik Antwi
Buse, D. C., Scher, A. I., Dodick, D. W., Reed, M. L., Fanning, K. M., Manack Adams, A., & Lipton, R. B. (2016). Impact of Migraine on the Family: Perspectives of People With Migraine and Their Spouse/Domestic Partner in the CaMEO Study. Mayo Clinic Proceedings, 91(5), 596-611. doi:10.1016/j.mayocp.2016.02.013
Disclaimer – This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding migraine and headache disease and all medical conditions. ument