Delivering Culturally Competent Care in Parkinson's Disease
Delivering comprehensive multidisciplinary care in Parkinson’s disease will be important as we imagine a better future for those persons with Parkinson’s disease. As we move in this direction, it will be important to understand and align with culturally competent care.
What is culturally competent care?
Cultural competence is defined as “the ability of providers and organizations to effectively deliver health care services and to meet the social, cultural, and linguistic needs of patients”.
What are the components of culturally competent care?
When we make clinical recommendations, it is important to consider critical individual cultural components: These include gender, race and ethnicity, language, culture (including family-specific culture), socioeconomic status, sexual orientation, religious/spiritual affiliation, and disabilities.
Why do we care about culturally competent care in Parkinson’s disease?
When we think about persons with Parkinson’s (PWP), it is not feasible to think that we can offer care to all people living with such a complex disease; and to do so in a cookie cutter, algorithmic-type fashion. Therefore, we end up trying to incorporate algorithms and ‘one size fits all’ approaches. These have been developed largely for and from studying affluent, white, male, North American populations. When we teach our trainees about Parkinson’s disease we emphasize the potential for suboptimal care if we do not pay attention to cultural competence.
In a disease that affects the mind and the body; and a disease that results in such a range of motor, non-motor and mental health symptoms, it is important to consider the person who is sitting in front of us and what they ‘bring to the disease. ‘ The cultural context of getting to know the person first and what their history and lived experience has been will be critical to future success. Some of this lived experience can for example, include exposure to traumatic experiences and early childhood adversity.
When we don’t look at people through a holistic lens and we do not help them to understand what matters in their health, then we cannot fully appreciate where to focus— and hopefully to effect change for that person. For example, the wellness model from the First Nation’s Tribe perspective (indigenous people of North America) includes the land, the ancestor, and other nations (tribes). Arenas in which cultural perspectives are particularly important to acknowledge include attitudes toward aging, caregiving, and mental health— these areas have the potential to be heavily stigmatized. In any lifestyle prescription, understanding what the patient has accessible— will be critical.
How does culturally competent care shift over time for the PWP?
It is important to appreciate that a person’s competing demands and values may vary in importance over time—mainly due to changing life-circumstances. Something that may be important to a person on year one of diagnosis— may not matter much by year 5 or 10. Thus, we need to be fluid with our goals of care and we need to keep the conversation current about what really matters to the PWP.
How do we achieve this type of care?
A vital component to facilitating collaboration and trust between physicians and their patients (persons with disease) is actively listening about what they understand about their disease— what their goals are— what are their fears—what are the chief concerns. Fostering dialogue can enable physicians to appropriately apply their expertise in ways that positively impact outcomes. Personal preferences and patient choice play an important role and are key aspects of the delivery of personalized medicine— and are an integral part of the recently proposed ‘circle of personalized medicine.’
Parkinsonsecrets.com blog editors Drs Okun and Subramanian
Parkinsonsecrets.com artist Dr. Jonny Acheson