Self-Care Isn't Selfish: Addressing the Unique Challenges of Being a Patient Research Partner in Health Studies
Introduction
This is a topic that is rarely discussed but of utmost importance: prioritizing your own mental well-being, especially when participating in a research setting that might inherently pose some unique challenges to you. Please note, that being in your active recovery may not be the best time for you to engage in research studies. That said, every situation is different and being a part of research may actually assist in your wellness plan and wellness goals. This is something you should discuss with your care team and your research team if applicable.
Your Well-Being: The Foundation of Our Research
First and foremost, let us reiterate: Your health and well-being are non-negotiable priorities. Our research framework is fundamentally built on mutual respect and egalitarian relationships. This includes understanding that the unpredictability of life is even more heightened when living with any health challenges. (This applies to everyone on the research team!)
Our Commitment to Your Success and Well-Being
We recognize that meaningful participation goes beyond simply inviting you to partake in research activities. It involves creating conditions that not only permit but actively encourage genuine contribution. To this end, we're committed to:
Flexible Schedules: We understand that life's demands can be unpredictable, especially when juggling mental health concerns. Our framework is designed for flexibility to accommodate your needs.
Training and Development: To better equip you for the various roles and activities you might engage in, we offer training sessions and resources tailored to the research context.
A Supportive Community: Regular check-ins and a culture of open communication ensure that you have the emotional and logistical support necessary for success.
Access to Wellness Resources: We aim to compile and offer resources that can aid in self-care, stress management, and emotional well-being, so you can be at your best while contributing meaningfully.
Unique participation: There are many ways to engage meaningfully in the research process, we’ll use the WAG to match you to where you might be best suited and where you can flourish.
Adaptability and Accessibility: We will work to finds way to communicate (online, face to face, phone, text) that will help you be connected through the ways that work best for you.
Peer-Support: Every research partner will be buddied up, this way you can turn to each other for support, mentorship (everyone has something to teaching and learn), to build your network, to have each others backs, to shift the power in the group, and to have someone there to report back if you can’t attend for a period of time.
Respect, dignity and confidentiality: We will work to build safe and brave spaces, a trauma-informed environment that is built on principles of trust, compassion, dignity and mutual aid.
The Unique Obstacles You May Encounter
As Patient Research Partners with lived and living experiences of mood and anxiety disorders, you may find that your involvement in this research intersects with the very issues you're helping to study. There are a myriad of reasons why this role might become challenging, some examples include:
Emotional Triggers: Discussing or analyzing topics closely related to your own experiences can be triggering.
Time Management: Coping with mental health issues often demands a significant emotional and time investment, which might make it challenging to allocate time for research.
Fear of Judgment: Mental health often comes with an unfortunate social stigma. There might be an underlying fear of being judged for stepping back for personal reasons.
No Obligations, No Guilt
Given these challenges, it’s understandable that feelings of obligation or guilt may arise concerning the 'expected' contributions to the research. Here's the reality: There is absolutely no minimum time or effort requirement. Whether you contribute an hour a month or ten hours a week, all contributions are valuable and meaningful.
Leaving with Ease, Not Unease
If you find that you need to take a step back from the research, please know that you don't need to provide an explanation. We understand that the nature of living with a mental health condition often means navigating complex emotions and scenarios that may not always be easily articulable. You are not required to prove or justify your departure.
Contributions in All Capacities Are Impactful
To echo the sentiments of Martin Luther King Jr., "Not everybody can be famous but everybody can be great, because greatness is determined by service." Regardless of the length or extent of your involvement, you bring a unique and invaluable perspective that enhances the quality of the research. Your presence, however long that might be, has an impact.
Fostering an Inclusive Environment
We aim to create a research environment that supports your needs as individuals first. The Latin term "Primus inter pares," or "first among equals," encapsulates our ethos. Every participant is seen as an equal contributor to the project's success, which means recognizing and honoring the need for self-care.
To Recap
Being a Patient Research Partner is a unique role that comes with challenges that are equally unique. Our overarching goal is to make it easy for you to prioritize your health and well-being above all else. We encourage you to engage at your own pace and comfort level, understanding that your contributions—no matter how big or small—are meaningful. Thank you for your invaluable participation, and please remember to take care of yourself first.
