How Research Helps

By participating in research studies, the field as a whole becomes more credible. With multiple disciplines examining the roles of end-of-life doulas, we further cement the importance of our support to a larger audience. Through exploring the field, research is able to qualitatively and quantitatively measure the EOL doula impact on individuals and communities. 

This leads to identifying problems and opportunities, and helps to create new ideas on how to deliver care. With feedback and insight from working doulas, researchers are able to look at delivery care models that can be integrated into a larger public health approach to end-of-life care. By examining the ways in which an end-of-life doula may address the spiritual, emotional, and practical care needs of the dying, those conducting studies can make correlations for a more comprehensive care delivery model.  

Research directly helps reach people. While this work has been done informally for as long as civilizations have existed, there are many people unaware of the role of the end-of-life doula. Research and the publication of studies brings attention to the field and expands access to those just learning about doula support. It also allows researchers and participants to gain a deeper understanding of people and why they do the things they do. The examination of individuals at end of life is often a challenge, and doulas can serve an intermediary role by sharing some of their experiences. Through examining doula and client responses and relationships, we have the opportunity to help shift what end of life may look like for many.

Why Participating Matters

Expanding public awareness is predicated on involvement by end-of-life doulas. The greater doula involvement in studies, the more support we create for this role in different communities. While sometimes study questions may seem repetitive or like another you already answered, they are creating a baseline of understanding for those new to the work and also those who are studying it.

Having published research allows doulas to find out more information about ourselves as a collective. Good research will include the opportunity to be informed about results and allow each of us to educate others about the role of doulas on a larger scale. This can be used when we educate our clients, care facilities, and our communities. It even plays a role in how we advocate for doula support from a systemic perspective. The doula community as a whole benefits from your involvement, as together we can influence the development of policy, practice, or service provision, shape legislation, and even alter behavior and attitudes in health care.

Participants are the most valuable component of any research. Specifically for social, behavioral, and medical sciences, they are necessary in order to gain answers to important questions. The spaces that doulas enter are understudied and often hard to access for many researchers. We can serve as a bridge between the dying, their loved ones, and the research community. 

How Your Voice Has Already Impacted Research

Research on doulas providing end-of-life support is growing! This work cannot be done without your voice. Researchers can find out only what you are willing to share. While there are too many research articles to share in full here, there are some notable works that we want to mention as examples of what the world is learning about EOLDs. 

Research is important in finding out about who populations “are.” Some studies, such as “New Faces at the Bedside: Death Doulas, Vigilers, and Companions,” [Read Abstract] help us to understand basic demographics and backgrounds of unique populations. Studies like “The voices of death doulas about their role in end of life care” help inform others about how and why death doulas have emerged in the modern context. Additionally, this work helps to identify barriers and challenges currently faced by EOLDs. Along the same lines, research such as “We are Human too”: The Challenges of Being an End-of-Life Doula” [Read Abstract] can help you gain insights and understanding about the struggles EOLDs may be facing. This information may help you and your doula community support one another and recognize what you may need to tune into. 

Sometimes, research may come in the form of interviews or surveys that find their way into public media, such as The New York Times piece “Death Doulas’ Provide Aid at the End of Life.” Another widely disseminated piece, also from the Times, is “The Positive Death Movement Comes to Life.” While this piece is not solely concerned with EOLDs, it does connect doula work with the death reform efforts of death positivity. These types of work often influence public opinion and may influence how and why individuals perceive the need for EOLD support. 

Researchers are bound by the information they can receive. Research also builds on other research. One example of research building on others is Amber Thompson’s dissertation, which focuses on the value(s) of doulas for end-of-life. Expanding beyond demographics, tasks, and services, this work seeks to better understand what doulas seek to provide at end of life and where they hope to see this role go in the future. 

While this work is ongoing, a few descriptive findings have come from the first phase of the project, which surveyed a pool of 224 end-of-life doulas based in the United States. 

Anyone interested in learning more information from this first phase should feel free to contact Amber. Please see the end of this article for additional research opportunities.