Holistic Opportunities for Patient Equity (HOPE) Clinical Intervention
Clinical encounters are a routine aspect of healthcare for many individuals, but for those who are neurodivergent, these appointments can present unique challenges. Neurodiversity refers to the natural variation in neurological traits among individuals, encompassing differences in cognition, perception, and behavior. Making up an estimated 20% of the population, individuals who identify as neurodivergent may experience the world through ADHD, OCD, generalized anxiety, schizophrenia, autism, or some combination of these. While systems, cultures, and social structures often emphasize conformity to a narrow set of norms, neurodiversity challenges this notion by celebrating the unique perspectives and abilities of neurodivergent individuals.
Research on longevity indicates that life expectancy for neurodivergent individuals, specifically those who are autistic, may be reduced by as much as 30 years. While neurodivergent individuals may have more complex medical needs, it seems that the structure of our healthcare systems shoulders a large portion of the blame. As someone who loves, cares for, and is an advocate for neurodivergent members of my family and works to improve the delivery of healthcare for vulnerable populations, I find this wholly and unequivocally unacceptable.
It is at the collision of my professional interests and my personal experiences that this project came together. I have leveraged my background in women’s health, health services research, health policy, and my current training as a doctoral candidate in health infrastructures and learning systems to better advocate for inclusive, neurodiversity-affirming care for my family members. Neurodivergent individuals may experience challenges with the sensory environment, social interactions, processing information, decision-making, anxiety, and prior clinical trauma. In the healthcare setting, that might look like this:
Sensory Overload: For neurodivergent individuals, sensory sensitivities can significantly impact their experience during doctor's visits. The bright lights, bustling waiting rooms, and unfamiliar sounds of a medical setting can be overwhelming and distressing. Sensory overload can lead to heightened anxiety and discomfort, making it difficult for individuals to focus or communicate effectively with healthcare providers.
Communication Barriers: Communication difficulties are another common challenge neurodivergent individuals face during doctor's visits. Whether they have difficulty expressing themselves verbally or understanding complex medical terminology, communication barriers can hinder effective interactions with healthcare providers. This can result in misunderstandings, frustration, and, ultimately, inadequate healthcare.
Anxiety and Stress: Doctor's visits can be anxiety-inducing for anyone, but for neurodivergent individuals, the uncertainty and unpredictability of medical settings can amplify stress levels. Fear of the unknown, coupled with sensory overload and communication challenges, and possible worries around clinical concerns can contribute to heightened anxiety before and during appointments. As a result, some neurodivergent individuals may avoid seeking medical care altogether, further exacerbating health disparities.
Navigating Social Interactions: Navigating social interactions with healthcare providers can be challenging for neurodivergent individuals, particularly when social cues and expectations are implicit. Neurodivergent individuals may struggle with interpreting nonverbal cues, maintaining eye contact, or understanding social norms, leading to feelings of discomfort or alienation during appointments.
Executive Functioning Challenges: Keeping appointments, arriving on time, following up as instructed, and consistently taking prescribed medications can be challenging for neurodivergent individuals who experience executive functioning challenges. These challenges may result in inconsistent, disconnected, or otherwise inadequate care.
I absolutely believe something can be done about this and that all healthcare experiences can be inclusive, effective, high quality, and neurodiversity-affirming! In this health equity project, I proposed engaging with Planned Parenthood of Michigan to better serve neurodivergent individuals seeking reproductive healthcare services. Committed to inclusive, high-quality, equitable, and patient-centered care, Planned Parenthood was a natural choice as a community partner.
Some ways that providers in any clinical setting or specialty can meet the needs of their neurodivergent patient population are:
Empathy and Understanding: Empathy and understanding are essential when interacting with neurodivergent individuals during doctor's visits. Recognizing the unique challenges they may face and validating their experiences can help build trust and rapport. Healthcare providers should approach appointments with patience, compassion, and a willingness to accommodate individual needs.
Creating Inclusive Healthcare Environments: Creating inclusive healthcare environments ensures that neurodivergent individuals feel comfortable and supported during doctor's visits. This may involve making physical accommodations, such as providing sensory-friendly waiting areas or offering noise-canceling headphones. Healthcare providers can also adapt their communication styles to better meet the needs of neurodivergent patients, using clear and straightforward language and allowing extra time for questions and explanations.
Promoting Self-Advocacy: Empowering neurodivergent individuals to advocate for their own healthcare needs is essential for fostering autonomy and self-confidence. Healthcare providers can support self-advocacy by encouraging patients to express their concerns, ask questions, and participate in decision-making about their care. Providing resources and guidance on self-advocacy skills can further empower neurodivergent patients to navigate doctor's visits more effectively.
Addressing Healthcare Disparities: It's important to acknowledge that neurodivergent individuals, particularly those from marginalized communities, may face additional barriers to accessing healthcare. Socioeconomic factors, systemic inequalities, and stigma surrounding neurodiversity can contribute to disparities in healthcare access and quality of care. Healthcare providers must work to address these disparities through culturally competent care, advocacy for policy changes, and collaboration with community organizations.
Clinical encounters can be challenging for neurodivergent individuals, but with understanding, empathy, and accommodations, healthcare providers can help make these experiences more manageable and supportive. By recognizing the unique challenges neurodivergent patients face and taking steps to create inclusive and accessible healthcare environments, we can work towards a healthcare system that meets the needs of all individuals, regardless of neurodiversity.
