In 2019 when Extension educators were analyzing the results of a statewide needs assessment, they spotted a trend in many Wisconsin counties. Offices that provided public benefits, like FoodShare and BadgerCare Plus, were seeing many applications from residents whose spouses or partners had recently died. They found that a lot of them had never dealt with the household finances. Trying to manage expenses and locate financial records, compounded with grieving their loss, caused things to spiral out of control.
To address this situation, Extension educators created Planning AHEAD, a comprehensive end-of-life planning curriculum that includes tools to help people handle financial changes, choose powers of attorney, create plans for what they want to happen with their assets, make decisions about end-of-life care, and to process grief after losing a loved one. “I had just lost my dad to brain cancer and so could relate to all the challenges that a family faces when someone dies,” said Jenny Abel, Extension’s Financial Security Outreach Program Manager. “There were lots of estate planning curricula out there, but we couldn’t find anything that covered all of the facets of end-of-life planning, so that’s what led to Planning AHEAD.”
During the development of Planning AHEAD, Jackie Carattini, an Associate Professor and Human Development & Relationships Educator for Extension’s Wood County office, heard from partners that the current curriculum would not work for their Hmong community members. “One partner said that talking about death is prohibited. It’s a taboo in the Hmong culture,” said Carattini. Carattini’s partners were confident that the Hmong community would benefit from the Planning AHEAD curriculum if it could be written in a way that honored the Hmong culture.
Abel and Carattini reached out to Dr. Maichou Lor, Assistant Professor at UW-Madison’s School of Nursing. Lor herself is Hmong, and her research focuses on language and cultural access to care and patient-provider communication for populations with limited English proficiency, concentrating on Hmong populations.
Lor was happy to take on the project. She began by recruiting eight Hmong students from UW-Madison and UW-Whitewater. They worked together, page by page, to help each other understand and interpret the Planning AHEAD curriculum in Hmong/Hmoob. Shoua Xiong, a Hmong student studying Nursing at UW-Madison, is a student on Lor’s research team. She shared what the process was like for her and other students. “It was challenging because some of the terms don’t translate directly into Hmong well, so we had to do our best to get close. Words like ‘palliative care’, that’s not something that can be directly translated into Hmong,” Xiong said.
Lor set out to include as many viewpoints as possible to adapt the curriculum to reflect the diversity and cultural practices within the Hmong community. “The Hmong community is very, very diverse in religion and cultural practices. Our goal was to make sure that the curriculum reflected the cultural practices, the ways of thinking, and the way the Hmong community would handle care. We decided to go to the community and get more information about how they think about the end of life.”
In the summer of 2022, students presented the curriculum in Hmong to members of the Hmong community and asked them how it could be changed in a way that was relevant to Hmong beliefs and traditions. Lor worked with the students to present the curriculum and conduct the interviews. She encouraged students to meet people where they were and where they were comfortable. “It’s not just terminology, but also acknowledging at the beginning of the interviews that this is not part of their norm and the discussions are going to be difficult,” Lor said. Acknowledging that upfront helped the students and participants have more open conversations.
Students returned with lots of feedback, including how Hmong elders talked about death and dying and their willingness to plan ahead. One of the things they realized is that the way the curriculum discussed death needed to change. According to Lor, the Hmong language has a more passive way of talking about things in the future. In the translation, they lost that meaning because English does not have an equivalent. “We found that if we say, ‘you need to plan for death’, our participants would think, ‘No, I’m not dying right now, so I don’t need this curriculum.’ But, when we use more passive terms that do not mean it’s going to happen now, that makes a big difference in their willingness to plan and discuss what will happen,” Lor said.
Another way they were able to make the curriculum culturally relevant was to make a slight change in the curriculum’s goal. Lor says that talking about death can be taboo for traditional Hmong because they worry that talking about death will bring death. Instead, when the curriculum was seen as a way to write down their Hmong beliefs so their traditions would not be lost, they went from avoiding the activity to actively participating. “We had several requests to add a page where they can write their name so the book becomes their wishes that they can pass on. There is a page where they can list keepsakes and belongings and say who they want those things to be passed to. There’s also a funeral checklist so they can say what they want to happen. They really appreciated those opportunities to explain to family members their wishes.”
After incorporating what they learned from the first interviews, Lor and Xiong presented the newly updated materials to participants. They were pleasantly surprised with the positive feedback. Xiong says, “Before we made these changes, our Hmong elders were reluctant to participate in the Planning AHEAD curriculum because the topic was taboo and presented in a way that was against their beliefs. By taking some time to understand their cultural values, we were able to honor their traditions and help them prepare for their future.”
Lor said that she was excited about the community response to the curriculum and hopes to have more opportunities to collaborate with Extension educators. “It’s so important because we are giving back to the community. A lot of the time, the research that we do doesn’t get translated for years and the community, the people we serve, don’t get to see the results, don’t get to learn what happens to it. This collaboration is so important because it puts things into action, and we can give back. Our Wisconsin Idea is being upheld.”
In addition to learning about their roots, Xiong and the other students involved had the opportunity to participate in qualitative research and gain important skills they will use as professionals after graduation. Xiong said, “I went into this thinking that I don’t have enough expertise to interview members from my community, but this project really built my confidence and helped me learn how to think critically through the process. I feel like this experience provided me with the skills to be independent and also work with a team to solve problems.” Xiong will graduate with her BS in Nursing in May 2024.
While they have more changes to make before releasing Hmong Planning AHEAD statewide, they are confident it will be well-received and helpful. The final curriculum will be distributed to county educators and community organizations that work with Hmong residents.
Studies show that while 92% of people think it is important to talk about end-of-life wishes with their loved ones, only 32% have done so. Developing a curriculum like Planning AHEAD aims to help Wisconsinites consider end-of-life decisions. “Partnering with our colleagues at UW-Madison allows us to create, innovate, and adapt life-changing programs. Being able to provide this important curriculum in ways that are culturally relevant to communities throughout Wisconsin is vital to the well-being of individuals, families, and communities,” Abel said. Planning AHEAD addresses key topics, including handling financial changes, advance directives, estate planning, choices in end-of-life care, final wishes, and dealing with grief.
The Hmong Planning AHEAD curriculum was funded through a Wisconsin Idea Collaboration (WIC) Grant, sponsored by Extension and the Vice Chancellor for Research and Graduate Education. WIC Grants are designed to catalyze collaboration between Extension and other UW–Madison Schools, Colleges, Institutes, and Centers to extend the knowledge and resources of the University of Wisconsin to people where they live and work.