From Our Blog

Zen Caregiving Project is working with the non-profit organization Imerman Angels. Imerman Angels provides comfort and understanding to those experiencing cancer by matching them with a Mentor Angel, a cancer survivor or caregiver who has faced the same type of cancer.  ZCP delivered a four-part training to staff on self-compassion and ran a session on grief and loss for the wider Imerman Community on Grief Awareness Day. ZCP will be working with Imerman Angels on future resources around grief for Imerman Angels’ Mentors and Mentees. 

We spoke with Executive Director Stephanie Lieber and asked why a focus on grief was so important for her staff and community. 

ZCP: Why did you feel it was important to bring in training around grief for your staff and community?

Stephanie: The idea actually didn’t come from me, it emerged from our mentors. Our mentors were coming to us and sharing that they didn’t feel adequately equipped to support their mentees going through grief and loss. They wanted resources to give to their mentees to support them through a range of losses, including loss of confidence in the body, loss of a limb, or loss of a partner. They also often struggled to address the feelings of loss that were triggered for them when supporting their mentees. We needed to equip our community with tools and approaches to support them and to help them support each other.

Hearing this from our Mentors, our Staff team dug in and thought about their own feelings towards loss and grief, along with how we serve our community.  In our staff team alone, four staff members have lost loved ones to cancer in addition to others who have survived cancer themselves, or have relatives and friends that they have supported through cancer. It was as part of this focus on grief and loss we reached out to Zen Caregiving Project to work with us on this sensitive and incredibly important topic.

It’s a much bigger conversation than just us at Imerman Angels – people simply aren’t talking about loss and grief openly in society. They may be talking about it in small groups, but they aren’t standing up and saying “I’m grieving“, “I’m still grieving” or “Grieving is hard“. It’s just not a topic and discussion that is culturally and societally welcome. 

What is the biggest learning you took away from the Staff Training that ZCP delivered?

For me, the biggest takeaway was that our job is not to fix people’s grief. Grief is not something that is meant to be fixed – it’s meant to be experienced. As a support organization, our job is to sit with those who are grieving and be there with them, being with whatever they are feeling at that moment. Roy Remer, who led the training, shared that when supporting others through grief “it’s not what you say, it is how you show up”. You need to show up and just be present for someone, and drop your own agenda of wanting to change things or change how the other person is feeling. 

What did you find out about your community from the open session you ran with ZCP for your community on grief and loss?

It was clear from the high attendance and the session feedback we got that we need to be doing more sessions like this. We need to be providing opportunities for open and candid conversations and making these conversations accessible and frequent. 

In the session itself, I was surprised and touched by what I witnessed happening in the Zoom Chat. People started sharing about their losses via chat and others in the group responded, built each other up, and said “that sucks, I’m here and I’m listening, your feelings are normal, it takes time to heal”. Right there on the chat was a community of grievers that showed up and listened. That’s what our community is. 

On a personal note, my dad died in February of this year and in the two months after his death I would call and apologize to friends who had previously lost a parent as I realized I hadn’t showed up in the way that they needed and would have been most helpful to them. Yes, I drove hours to attend funerals and delivered food, and checked in on them to see they were OK, but I wasn’t just there for them to just be as they were. I didn’t spend time just acknowledging how they felt and being a supportive witness to that.  That’s what the people in the chat function did at the session – they showed up. 

What elements of ZCP’s approach to loss and grief did you appreciate the most?

I really appreciated Roy’s unique approach to loss and grief. The way that he carefully and thoughtfully wove mindfulness into his explanations and how the approach is geared towards offering people useful tools to use, rather than trying to help or solve their grief.  

And along with this idea of “showing up” I also appreciated the emphasis on compassion, and that compassion involves feelings and action. But also learning that an action doesn’t have to be big and loud, sometimes an action is as simple as being present and not saying something. 

What are the next steps for Imerman Angels to integrate grief awareness and training into your program?

We never thought of this as a self-contained project. All of what we have learned, and the ideas that have sprung from it, has to be integrated into everything we are doing. We have, for example, run journaling sessions, or yoga classes in the past but in the feedback from the Grief and Loss Session people were suggesting that we run a Grief and Yoga class, or Grief and Journaling class. And of course, that makes sense because essentially everything we do is about loss – not about death – but a huge part of living with and managing cancer is about experiencing loss. 

There is no end to this conversation, it has to be an ongoing dialogue with our community to support them and help them open up the conversation to others, even outside of the Imerman Angels community. Because grief is not specific to a particular audience – we all experience loss on a daily basis and are all going to experience grief at some stage in our lives.

For more information on this project or our custom training course and sessions, please contact Sarah at sarah@zencaregiving.org.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.

Thirty years is a long time to be in a relationship with anyone, let alone with an organization that you volunteer for. Loretta Lowrey arrived at Zen Caregiver Project (then known as Zen Hospice Project) as a volunteer in 1992, and while she stepped away during a few child-raising years and then again during her busy career years, Loretta has always found herself being called back to the organization in one way or another.

She came to Zen Caregiving Project (ZCP) in the middle of the AIDS epidemic when even the word ‘hospice’ was new to her.  

“Suddenly, everyone in my world was talking about it—the woman who took care of my daughter, my sister, a museum curator that I worked with,” Loretta said. “When something presents itself  to me three or more times, I pay attention to it.”

Paying attention is exactly what she did by volunteering at Laguna Honda Hospital as a Zen Caregiving Project caregiver. She continued in that role for five years until her second child turned two years old; she then stepped away to spend more time with her children. Because of her background in nonprofit management and development, Loretta continued to stay active with the organization by occasionally helping with events and development support. Over those years of being a full-time mom and employee, Loretta lost touch with ZCP for a while.

In 2013 when Loretta was looking forward to retirement, she decided it was time to return.

It felt like coming home,” she said. “When I returned to Laguna Honda Hospital (LHH) as a volunteer, it felt so familiar and lovely to be a part of that again. We all live in these self-created bubbles and the greatest impact for me has been meeting the range of people who have invited me into their lives and into their hearts.”

Observing the frailty and resilience of the residents is what continues to open Loretta up to becoming more compassionate and open-hearted.  

“It’s given me perspective on what is truly important. Volunteering at the hospital and being with residents is so real. So many other things that seemed important before dropping away. It motivates me to live more fully by being exposed to illness and death and having it normalized,” Loretta said. 

One of the residents who made an impact on Loretta was a woman who used a device to speak. The only way that she could communicate was by typing out words and since it was difficult to use her hands, it took a long time for her to have “a conversation.” 

“I was so taken aback that it was such an effort to communicate, yet she would say things like ‘That’s such a pretty dress.’ We laughed and cried together while completing a legacy project that was important to her.”

During the pandemic, Loretta became a Mindful Caregiving Education (MCE) instructor for ZCP. She now teaches some of the MCE courses and still sits with residents at LHH. Through the years and through her various roles with ZCP, Loretta has become more aware of herself. 

“One thing I am able to notice is when I’m acting out a role or when I have my armor on. The training we’ve had to sit at the bedside with someone has made me more aware of the power of presence,” Loretta said. 

“I really think of this work as part of my practice. I think of service as seeing the wholeness in others. I thought I’d be coming to this work to give something, but in fact, I take away so much more than I give.

“Many of these residents are living fully in spite of their illness or condition,” Loretta said. “They are such a gift to me.”

And Loretta, like all our volunteers, is a gift to us at Zen Caregiving Project.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.

Bob Stumpf is prepared to go the distance whether it’s in a relationship with others or on a run. He’s completed 28 marathons and these days, Bob often comes in first or second in his age group. (Don’t tell anyone that at 74 years of age, Bob generally competes against only one or two others in his age category). 

As a volunteer with Zen Caregiving Project (ZCP) for nearly six years, Bob sits with residents at Laguna Honda Hospital every Friday afternoon. One particular resident continues to enrich Bob’s life even though this person has since died. 

“There was a resident at Laguna Honda that I visited weekly,” Bob explained. “I would save him for last because I knew it would be an uplifting experience for me at the end of my day.”

Bob explained that he loves sports and thought he knew everything there was to know until he met S, that is. “S. knew everything there was to know about sports, everything. He and I also bet on sporting events, usually hundreds of thousands of dollars at a time, with play money. I think he still owes me some money,” Bob said with a grin.

“Sports were a common bond from the beginning, and S. had also visited my hometown in  Southern Indiana, so he understood where I came from,” Bob said. “It wasn’t just me taking care of him; it was S. taking care of me.”

That’s one aspect that surprised Bob about being a volunteer – how much he would get back from it. 

“Not only have I gotten close to the residents I sit with, but I’ve developed close, personal relationships with other volunteers. During our shift change meetings, I find myself getting to know other volunteers who are very different from me, and yet we are kindred spirits,” Bob said.

“I didn’t expect that whatever calls people to do this work would give me the opportunity to meet so many other like-minded folks. We’re a real community.” 

As a left-brained attorney for more than 40 years, Bob surprised himself by recognizing that he can also be a right-brained kind of person. When he turned 65 years old, he wanted to scale back his work and increase his volunteerism. While he had been on a number of charitable boards over the years, he found himself drawn toward volunteer work that would give him a one-to-one connection. 

“I’ve always been interested in the concept of death; not in any kind of morbid way, but in the sense that we are born, we live, and then we die.”

Bob is also interested in music; specifically, he has a penchant for collecting jukeboxes. He once had 22 jukeboxes in his office that are now at home with so many others that he doesn’t divulge the total number. There’s one behind him as we talk, lit up and ready for any song to be played.

“They all work,” he explained. After he purchases them, he sends them to someone who restores and fixes them for him and then delivers them wrapped up in such a way that Bob feels like it’s Christmas morning every time one arrives.

He feels that same joy when he leaves his shift at Laguna Honda.

“I get so much more out of volunteering than I put into it,” Bob said. “When 6 p.m rolls around on Friday, I’m always at my happiest as I’ve been all week. During my shift, I’m able to get out of my own head. It’s a cleansing and nourishing experience.”

“I’m more sensitive now to the importance of having relationships with people who are really not like me at all,” Bob said.

One such resident that Bob has met could not be more different. Bob has had many advantages as a white man who attended Harvard, whereas E. had a very different life as a black man in America who for many years lived on the streets. Bob and E. have met weekly since December 2016, and they have forged a strong relationship.

“He’s important to me,” Bob explained. “ We aren’t family; we aren’t best friends, but we get together weekly, and he’s my friend. When I leave, he usually says, ‘Be safe out there.”

Bob looks off into the distance and returns to thoughts of his friend, S. who died last year.  

“I saw him for almost two years,” he said, “and every time I walk by his room at Laguna Honda Hospital, I think of S. I miss him.”

Bob hasn’t just run 28 marathons. He’s running a marathon with residents at Laguna Honda, and rest assured, he’ll go the distance with them not to win any kind of medal, but to just be present on their journey. “People can have almost nothing left, and they are still living their lives,” Bob said. Yet they still have Bob, holding their hand and offering his presence. And often, at no extra charge, he offers them a few jokes.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.

Community Forward SF is a non-profit that works with and supports the most vulnerable and underserved communities in San Francisco: adults and older adults, who are or have been chronically homeless, those who are dually or triply diagnosed, those with chronic medical conditions, substance abuse issues and mental health needs and those who are BIPOC, LGBTIQQ. Community Forward SF offers medical, emergency, and transitional shelter, supportive housing, and a large array of wrap-around services such as mental health services, case management, substance abuse treatment, and domestic violence support to meet clients where they are at when they access the service.

The nature of the work they do results in front-line and clinical staff at Community Forward SF witnessing loss, suffering, and distress on a daily basis which can lead to emotional strain, empathy fatigue, or overwhelm. This strain on the staff has only increased since the pandemic. 

In response, Community Forward SF is partnering with ZCP who will deliver four monthly sessions to Community Forward SF’s clinical staff. These sessions will cover the role of mindfulness in exploring and regulating emotions, compassion for yourself and others in a caregiving role, the role of loss in caregiving, and how to approach maintaining healthy boundaries. 

Suzanne Adams, PhD, the Vice President of Clinical Services at Community Forward SF explained why she approached ZCP to support her staff: 

“Mindfulness is an integral part of a cultural shift I hope to impart on not only for our clients’ wellbeing but for our clinical team, as well. Our clinical staff manage the demands of difficult jobs–feelings of activation, coping with vicarious trauma, and issues of burnout–while also being called to address the essential need of self-care. I reached out to Zen Caregiving to provide the education, resources, and emotional support to my team that can help them in all areas of their experience.”

Sessions will begin in January 2022 and will run until April 2022. 

If you are interested in how ZCP can support you and your team, please contact sarah@zencaregiving.org to learn more.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.

In April this year we ran the first wave of our Family Caregiver Study in partnership with academics at the University of California, Davis, which you can read about in our previous blog. We had a total of 140 people join that first wave, with 116 people completing the sessions and the main surveys they were sent*. Individuals joined from all across the country and even internationally. 

We were encouraged by the number of caregivers that signed up and participated in this first wave, and it showed us that there was a clear desire from caregivers to attend our Mindful Family Caregiving course. We approached the Stupski Foundation, who had supported our first wave of the study, and they generously agreed to fund a second wave. 

For this second wave, we changed the timing of the sessions to make it easier for caregivers on the East Coast and those outside of the USA to join. We capped our registration at 76 people and the course ran across September. As with the previous wave of our study, we asked participants to fill in four surveys, one a month before the course started, one just before the course started, one immediately after the course finished and we will ask them to fill in a final survey a month after they have finished the course. 

Having this second wave of participants will provide us with more data for our analysis, will help us get greater statistical power in our analysis and will help us identify more subtle changes in the data.

Next steps

We will be compiling the data from Wave 1 and Wave 2 and examining the impact that the course had on caregivers’ emotional, psychological and physical health, their level of caregiver burden, and their wellbeing. We hope to have the results published in an academic journal in early 2022 and will then work to share our findings with our community and other caregiving organizations, as well as everyone who participated in the study. We will also be examining the feedback that caregivers provide on the format and content of our course, and using this to improve our course design. 

* We had expected a greater drop-out from participants, recognizing the difficult and often rapidly changing schedules of many caregivers.

We’d like to thank the Stupski Foundation for their generous support of the study, Prof Janice Bell, Prof Phillippe Goldin, and Michael Juberg for sharing their time and knowledge so generously, and everyone who shared our study with their community, enabling us to reach such a large family caregiving audience. Anyone interested in working with ZCP on further research studies, please contact Sarah@zencaregiving.org

Camille Tacderan is the Daytime Charge Nurse on the South Three (S3) Palliative Care Ward at Laguna Honda Hospital, where ZCP volunteers have served for over 30 years. We spoke to Camille about the value the Volunteer Program brings, her experience of working through the pandemic, and her excitement about the Volunteer Program starting up again. 

You have spent many years on the ward with the volunteers. What impact do you see them having? 

Residents really benefit from having volunteers on the ward to interact with. It can be as simple as them sitting and talking with a resident in the Great Room [the communal area of the ward], or for some residents who are non-verbal just being present with them or holding their hand. Also, the volunteers are on the ward weekly and often have regular visits with residents whose conditions are changing over time, so they build a relationship with them and can tailor their interaction to that resident’s current needs. 

They also support the families of residents. What is special about S3 is that it allows family members to be family members. They don’t have to be medical caregivers and instead can live their own lives and visit as sons and daughters, or spouses. The volunteers are a big part of that specialness because families know that even if they can’t be there to sit with their friends or relatives, the volunteers can be. And that is really reassuring. 

For staff, more than anything else, it is just knowing that there is someone to sit with a resident when they aren’t available to do so. As staff, we are looking after a number of patients and sometimes can’t sit with people as long as we would like. Especially when that person is approaching the end of their life, it is comforting to know that the volunteers are available to be with that person in their last moments. 

“It is comforting to know that the volunteers are available to be with that person in their last moments.”

You worked through the pandemic when volunteers weren’t able to visit the ward in person. How was that experience for you?

The pandemic was really challenging. On a personal level, there was a lot of anxiety around safety for yourself, your family, the residents, and the other staff on the ward. 

The ward closed to visitors and volunteers early in March 2019 to protect residents and stayed closed until mid-2021. During this time a lot of residents didn’t understand what happened, some didn’t recognize staff with masks on, and some clearly missed the interaction they had with volunteers and family. For staff, it was also very difficult as we were busy adapting to new protocols and keeping residents safe, and it was at this time, when we were busier than ever, that it would have been wonderful to have the support of the volunteers who could also be with the residents. 

The volunteers have started to come back in person to the ward. How do you feel about that?

I’m really excited as the volunteers are such a big help. We are getting more younger residents joining the ward, who are alert and will be in the ward for a long time so have a big need for social interaction from those around them. With our workload, the staff can’t always provide that level of interaction, which is where the volunteers come in. 

Some of these younger residents come to the ward having experienced a lot of social isolation. Some have been living in COVID hotels, experiencing a lack of contact and services. Some have been living alone at home or in an SRO. It is so nice to know that they can get the companionship and interaction they want, need, and deserve when they get to the ward, thanks in a big part to the volunteers. 

As the hospital is run by the San Francisco Public Health Department, we are the safety net of the city. Our residents may have been living outdoors on the streets with no family or connections and it is lovely to know that they can come to this ward and spend the last few days, months, or years of their life being cared for and that they knew there were people around them who did care about them. 

“What we do on the ward is give the residents love.”

What we do on the ward is give the residents love. They are warm, get three hot meals a day, and get taken care of physically and emotionally. Volunteers are a crucial part of this as they fill the gaps when the staff can’t be there. And that is what makes the ward such a special place.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.

Sarah comes to us from the Pacific Northwest though her roots and ties to California are deep and lasting. With a background in nonprofit management, partnership management, donor development, fundraising, and grants management, Sarah is excited to join Zen Caregiving Project and lend a helping hand in our development of long-lasting partnerships and create deeper and more meaningful relationships with our donors. 

She has worked in the philanthropic and nonprofit field for more than 15 years. In addition, Sarah also runs the Spokane Chapter of the MISS Foundation which offers peer-to-peer support for families whose children have died. She provides newly bereaved parents with support and comfort as they process their devastating grief. Her personal experience with grief and loss from an early age and continuing into adulthood is what draws her toward the work at ZCP. 

In her spare time, Sarah enjoys walking her two Australian Shepherds with her two cats who follow behind the dogs at a safe distance while they stroll together through the neighborhood. She’s also known to just step out the door of her home and keep walking in any direction until she gets tired. Often, she’ll end up seven to ten miles away from home and she’ll need to call her husband to pick her up.

As an avid reader, Sarah reads about one book a week, and while she’s willing to read just about anything, she has a fondness for literary fiction and memoirs. In 2021, her top favorites were Klara and the Sun by Kazuo Ishiguro, Hamnet by Maggie O’Farrell, Bewilderment by Richard Powers, and Notes on Grief, by Chimamanda Ngozi Adichie. Feel free to email her with your favorite suggestions to read next. 

In the late 1980s, Sarah studied Theravada Buddhism at Suan Mokkh monastery in Southern Thailand with Buddhadasa Bhikkhu. She spent a year in Asia with a backpack and a group of students who were some of the first Americans to travel again along the Silk Road by jeep, bus, and an occasional farmer’s truck from Northern Pakistan into Western China. Her experiences with meditation, grief, and the ongoing journey as a caregiver have made the transition to ZCP joyful and effortless.

Welcome, Sarah, to our family and friends.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.

As demand for our open courses increases, along with new partnerships requiring custom courses, we need more teaching time from our instructors. Across this year we have piloted an internal training program in which we provided additional training to three existing ZCP facilitators to qualify them to teach our Mindful Caregiving Education (MCE). 

The training consisted of 20 hours teaching with Executive Director, Roy Remer, and Senior Instructor, Mary Doane, covering our key modules, best practices for teaching MCE, and also a session dedicated to teaching online through Zoom. This training will be followed by the instructors co-teaching MCE courses with Roy or Mary.

Two of the instructors have shared what they learned from the training.

Loretta is a volunteer caregiver for people in hospice and palliative care. She has been facilitating New Volunteer Training with ZCP since 2017.

What, for you, was the most surprising thing you learned from this training? 

I was surprised to learn in the MCE training that I can set aside all expectations of delivering the perfect presentation and focus instead on being fully present to offer practices to caregivers. While there is much content to cover, I saw how effectively it was absorbed when there was plenty of space around the ideas. And by letting go of all sense of “performance,” my complete attention shifts to our participants. I look forward to practicing presence in the context of teaching

How do you feel it will support you in your professional teaching?

I know how powerful presence can be in caregiving, at the bedside with family members, and in hospice and palliative care settings. Presence is wholehearted and caring attention. It invites connection through deep listening – listening inward to mind, body, and heart; listening to others; listening with openness. With presence, we are better able to see what is true, and be with whatever shows up in the room, no matter how difficult. I feel certain that trusting and focusing on presence will support my teaching in the same ways it supports caregiving.

Was there anything you learned that you feel will be supportive personally?

Sometimes learning can mean remembering what we already know. The reminder to lead with an open heart will support me in life as well as teaching. The warmth and open-heartedness of the teachers and participants in the training helped me remember how healing this can be. I saw in them how leading with an open heart can be expressed through kindness, acceptance, vulnerability, and authenticity. Trusting presence and leading with an open heart are important lessons that will serve me, and allow me to serve others well.

Teresa is a journalist and zen practitioner. Born in Latin America, she grew up in Spain, and became a US citizen after two decades living and working in the US. She currently lives in Spain and takes care of her mother who suffers from Alzheimer’s.

Teresa partnered with ZCP to develop and teach our MCE for Spanish-speaking caregivers, which will be run in early 2022.

What, for you, was the most surprising thing you learned from this training? 

As part of the training, we did an exercise around Loss, which was very powerful. It made me realize how difficult it is to let go of things we care about, let go of our abilities, people in our lives, and our self-identities. Thinking that the people we care for or have cared for in the past already lost many of the things we struggle to let go of made me feel very compassionate towards them. The importance of setting boundaries and not feeling guilty about it was also a great learning.

How do you feel it will support you in your professional teaching?

The intense training, the teachings of Roy and Mary, the exchanges with the other instructors, and the opportunity to teach some of the modules prepared us for the next step of becoming instructors ourselves. I am very grateful.

Was there anything you learned that you feel will be supportive personally?

For me, I learned the importance of self-compassion and setting boundaries.

We at ZCP are grateful for the time and dedication our instructors have shown, and for their passion to support those caregiving for others. If you are interested in training with us, please keep an eye on the website for announcements of upcoming training opportunities.

If you like what you read, please join us and enroll in one of our courses, share our work with someone you think will benefit from it, or support us through a donation.

This year we began a two-year project in partnership with the Palliative Care Team at the Palo Alto Medical Foundation (PAMF), which is part of the Sutter Health Network. The aim of the project is to introduce support sessions for family caregivers within Sutter Health. 

The project began with Zen Caregiving Project (ZCP) delivering four sessions to the Palliative Care Team in Palo Alto and San Mateo. These sessions covered self-care, managing difficult emotions, loss, and maintaining healthy boundaries. The sessions were a way of introducing ZCP’s teaching approach and content to staff, helping them to recommend the sessions to family caregivers in the future, and hopefully also provided support to the staff in their emotionally demanding work. 

The next stage of the project will be running our CAREgivers program for family caregivers in Sutter Health. The CAREgivers course consists of six one-hour sessions, run weekly. The sessions are drop-in providing flexibility for the caregivers with their often unpredictable schedules. Each session includes some teaching on a topic, a short guided meditation, activities, and an opportunity for sharing with other caregivers in the group. 

We are working with social workers from two Sutter Health locations to recruit for our first pilot course in October and are planning to run another three to four courses in 2022. We hope that these first courses, taught by ZCP instructors, will build awareness and demand for the CAREgivers program among the family caregiver population. Following completion of the ZCP-led sessions, we hope to train Sutter Health staff members in the delivery of the program as part of our established Train-the-Trainer program. In this way, we would ensure the sustainability of the program and continued support for family caregivers. 

For more information on this project, CAREgivers, or our Train-the-Trainer program, please contact us at education@zencaregiving.org.

We have been working with Zuckerberg San Francisco General Hospital (ZSFG) since September 2019; researching, designing, and implementing a Train-the-Trainer program. In this first phase of the project, we trained four staff members, providing them with materials such as lesson plans, videos and handouts, to support them in delivering six mindfulness-based sessions to family caregivers in English. We have named this six-session course CAREgivers.  In June, after much careful planning and thought, we ran our first CAREgivers course with family caregivers.

The population at ZSFG is more diverse than neighboring hospitals, has higher rates of people who speak English as a second Language, and has a greater number of patients on Medi-Cal and Medi-Care. Part of our project involved understanding the needs of this population and designing our course to be as accessible and attractive as possible to them. In this blog we share five key takeaways for designing for this audience.

1. Not everyone has Zoom!

At Zen Caregiving Project (ZCP) we have been running all of our programs online since the pandemic, asking participants to join via video call to create a sense of online community. At ZSFG, however,  some family caregivers can’t use video calls as they don’t have access to a smartphone or laptop, have limited data for video calls, and/or aren’t comfortable using online technology and software like Zoom. 

We have designed the CAREgivers course so that participants can call in via cell, landline, or video call, making it possible for anyone to participate in all activities regardless of how they are calling in. Not all family caregivers use email, so we also have simplified registration to a process that doesn’t require an email address. Additionally, as online polls can’t accommodate call-in participants, we don’t rely on zoom polls to collect data.

2. Don’t ask for too many personal details at registration

Some patients and family caregivers at ZSFG may have uncertainty around their immigration status, or may be undocumented, causing anxiety about sharing this type of personal information with institutions. To address and hopefully reduce any such concern, we have limited the amount of identifying information we ask for at registration and in the course and in marketing materials we emphasize that the courses are a safe space.

3. Recruitment takes time, and lots of effort!

Recruitment was particularly challenging this year. Online advertising of our course via email and social media outreach was limited as some of the caregivers we were trying to reach simply didn’t have email or use social media. Physical flyers and posters in clinic waiting rooms were not as effective as usual as COVID-19 meant many patients either didn’t attend sessions in person, or attended on their own without a family caregiver.

 In the end, we had the most luck by building networks within the hospital: clinicians were asked to refer anyone they thought may benefit from the course, and we built awareness of the program through social workers and the long-standing Cancer Awareness Resource and Education program (C.A.R.E). But the key to effective referrals was the hard work of a ZSFG team member who reached out to the referred caregivers, introducing the sessions to them, answering any questions they had, and reminding them when the next session was. This personal connection with each individual caregiver was very important in building the trust of attendees.

Initial sign-up numbers were small but we know that building word of mouth takes time and are confident that this number will grow as awareness of, and trust in, the program increases.

4. Keep language simple

Many of the patients and caregivers at ZSFG speak English as a second or third language. While we will be designing courses in both Spanish and Chinese, we wanted the course in English to be as accessible as possible. We also recognized that some caregivers may read at levels lower than those of the general population. In response, we reviewed all of our materials with an aim to adjust the existing  language so that it met an 8th Grade reading level. Instead of talking about boundary encroachment, for example, we talked about crossing someone’s boundaries. Instead of using “melancholy” we used sadness, and instead of talking about cultivating self-compassion we talked about growing or building self-compassion.

5. Mindfulness can support everyone, but don’t assume everyone knows what it is.

For some of us, Mindfulness can feel mainstream. It is mentioned in mainstream media, there are hundreds of apps and programs related to Mindfulness and it is being used in everything from professional sports to kindergarten classes.

It is not, however, so mainstream that everyone knows what it is. In our research with family caregivers at ZSFG there were many who had not heard of the concept, although were interested when it was explained to them. 

In designing our course we started with the assumption that our audience didn’t know what Mindfulness is. We worked hard to simplify our explanations, adding an additional session to give time to explain and discuss the approach. We also removed any explicitly Buddhist language like “Sangha” or “Dharma”, and grounded our explanations in real world examples to show how Mindfulness could be practically used in daily life.

Next steps

We will be running our second CAREgivers course later this year, and courses will continue throughout 2022. We also hope to transition to in-person sessions, as the city begins to open up after the pandemic lockdown. To read more about the program please see our previous blog on the start of the project, and the experiences of the Mindful Caregiving Trainees on the project.