Season 2, Episode 5: Breaking Barriers: The Power of Text-Based Grief Support with Dr. Melissa Lunardini, Chief Clinical Officer at Help Texts.

Season #2 February 18, 2025

Have you been struggling to access free grief support or would like to support someone who is going through a bereavement? This episode might be for you. Let’s explore alternative ways of learning about grief and moving beyond traditional counselling and therapy. I had the pleasure of talking to Dr. Melissa Lunardini, Chief Clinical Officer at Help Texts, a text-based grief support platform. We discuss the benefits of this unique approach, its impact on the grieving process, and how technology can bridge the gap in grief education and support. If you are currently living in the UK, do not miss out on taking part in this free programme before it runs out. Scroll down to access the link below.

Key Insights & Timestamps:

• 00:00:49 Introduction to alternative grief support methods, focusing on text-based support.

• 00:02:12 Dr. Lunardini shares her background in grief work & the genesis of Help Texts. It originated from a personal loss and a desire to create accessible support.

• 00:05:03 Discussion on the limitations of traditional grief support and how text messaging offers a more accessible, low-burden approach.

• 00:10:48 Exploration of the science behind text-based support. Dr. Lunardini explains how text messages engage the brain's dopamine loop, leading to increased motivation & a sense of being cared for.

• 00:17:02 How Help Texts creates personalised messages based on user input and the expertise of grief specialists, ensuring relevant support tailored to individual experiences.

• 00:22:11 How the platform addresses significant dates and holidays, prompting supporters to reach out and lessening the burden of remembering for both grievers and their networks.

• 00:24:32 Reflection on the importance of shared grief experiences and how Help Texts facilitates connection and remembrance.

• 00:32:01 The critical role of reliable information in grief support, and Help Texts' commitment to curating content from vetted experts.

• 00:46:35 Acknowledging the cognitive challenges of grieving and how bite-sized text messages are more digestible than traditional educational materials.

• 00:51:03 Discussion of common obstacles to accessing grief support, and how innovative approaches like Help Texts can break down these barriers.

Notable Quotes:

• "I too, I think was initially skeptical… we’ve only ever been taught that there's this traditional path for bereavement support." - Dr. Melissa Lunardini

• "Until I saw your text, I thought I was losing my mind… thank you for making me realise that this is just a normal part." - Help Texts user

• "It's like the lights are on, but nobody's home." - Dr. Melissa Lunardini, describing the early weeks of grief.

Resources & Links:

https://sueryder.grief.coach/ - free personalised grief coaching programme via text for anyone living in the UK.

https://helptexts.com/

Don't forget to subscribe to A Guide to After Life podcast list to be notified of more conversations about navigating grief: https://www.guidetoafterlife.com/podcast-signup

- Take part in the Free Grief MOT to find out if you are stuck in a state of shock or whether your grief is progressing and does not require professional help.

- Book a free 15-consultation with me to discuss the results of your Grief MOT

- Find out about Grief Group Therapy that I offer

- Unsure whether to see a psychologist, psychotherapist or counsellor or grief coach for grief support? Read this blog post to find out more.

- Find out more about grief support

Guest’s BIO:

Bio:
Melissa Lunardini, Ph.D., MBA, MA, FT, has 20 years of experience in grief, loss, and trauma with specialisations in childhood bereavement, theory, grief technology, and trauma. She has developed innovative programs and interventions across various industries including healthcare, education, and non-profit. As Chief Clinical Officer at Help Texts, Dr. Lunardini oversees the delivery of global mental health and grief support via text message. She ensures all content is rooted in evidence-based practices, manages the subscriber support team, and leads research initiatives. A Fellow in Thanatology, Dr. Lunardini is a sought-after presenter and researcher. Her work on text-based grief support has been published in preeminent journals and presented at international conferences.

Your Host’s BIO:

Dr Monika Wieliczko, Chartered Clinical Psychologist D.Clin.Psych, MSc, MA

Psychologist by profession, and a widow, in private.

Connect with me on social media:

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Episode Transcript

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\f0\fs24 \cf0 Full Transcript\
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Dr Monika Wieliczko: Welcome to Guide to Afterlife, your go to podcast for young widows. I'm your host, doctor Monica Velichko, a psychologist and your fellow widow. Each episode brings you insights from world renowned grief experts and authors discussing complex grief issues and their personal experiences of loss. My aim is to challenge the way you think, empower you to face your feelings, and help you develop resilient ways to grief. Move beyond surviving each day and visit guidetoafterlife.com to take part in the Grief MOT, your first aid program for grief.\
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Dr Monika Wieliczko: In today's episode, we're exploring alternative approaches to grief support. One of the most traditional methods often involve either in person or online counseling, psychotherapy, or support groups. But today we're delving into something very different. We're thinking about alternative ways how we can access support without leaving home that could be through a medium we all use every day, which is through text. Sue Ryder, a bereavement charity, are currently offering a free grief coaching program to anyone living in The UK for a limited number of subscribers, which is one of the reasons I really thought would be important to talk about how to start thinking about where we are on our grief journey if we don't feel like we want to access some kind of form of whether that's therapy or counseling.\
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Dr Monika Wieliczko: So joining us today is Doctor. Melissa Lunardini, the Grief Clinical Officer at Help Texts, who will share with us insights into the program they're running, its benefits, how it can help on people's grief journey, and perhaps address some obstacles in accessing mental health support. So welcome, Melissa. It's great to have you here today.\
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Dr Melissa Lunardini: Oh, it's so great to be here. Thank you for having me.\
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Dr Monika Wieliczko: So if you could just introduce yourself and tell us a little bit about your background and what got you into grief work in the first place. And then subsequently, what got you interested in alternative forms of grief support, which is know, so not something we hear about very often.\
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Dr Melissa Lunardini: Yes. I know. I've had a long journey as most people do coming into this space. I started out as a public school teacher and I found myself running little support groups during my off periods. And while I was at school, I happened to take up a course in death and dying in different perspectives in the grief space. And, there was a woman who told, who came in as a guest speaker and was talking about grief support for children, teens, and their families. And I just was so captivated by that idea that it never dawned on me as a professional that, oh, there are people who run grief support groups for children and teens. And I immediately signed up to volunteer. And I volunteered for about a year before I decided to switch careers. And I started working in hospice, palliative care, and then also childhood bereavement. And I've been doing that work for the better part of about fifteen years, up until about the pandemic. And then I made a little switch again and started working at the intersection of grief and technology. So it's been it's been a a long twenty years in the in the space, but it's it's all led me to where I am now, which is being able to really support people at scale when we think about the global impact Mhmm. Have through something as simple as a text message. It's it's pretty compelling.\
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Dr Monika Wieliczko: Yes. It it is. And it's not something, I must say, that immediately comes to mind when you think about grief support, which is why I remember when we first met at the grief conference, the European grief conference in November in Dublin, my first response was like, do you mean grief support through text? That sounds really not like something I would immediately consider an option for myself. But then the more I started to read about it and Melissa to your presentation and and thought, well, that actually there is a point you're making about making things accessible to those perhaps especially who who for various reasons won't be able to access more traditional form of support or it will just not be appropriate for them to do so or acceptable.\
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Dr Monika Wieliczko: So I really want to find out a bit more about what's the story behind help texts, helping people with grief through texts. Yes. If you could maybe say a bit more about that.\
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Dr Melissa Lunardini: I will. And I will add to that as somebody who's done direct service for so many years, I too, I think, was initially skeptical. And I think it's okay to be skeptical of new new ways to process support because we've only ever been taught that there's this traditional path for bereavement support, right, where, you know, you go\
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Dr Monika Wieliczko: to\
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Dr Melissa Lunardini: person counseling or perhaps you go to support groups. We lean on family members and friends. There's this self help element where we can access books and reading materials, things like that. But the interesting thing is is I can't think of who the author is at this point, but there is some some literature that I was able to access at least in the hospice space where only about a third of people actually use sort of that one on one counseling and support groups, a third\
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Dr Monika Wieliczko: Mhmm.\
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Dr Melissa Lunardini: Which is tells me as somebody who provides services, wow. We're missing a large portion of the population, and we have to start asking ourselves questions. Right? Like, is it because it's not available, or is it because it's not really what they're looking for right now when they're Mhmm. Support initially. Right? Perhaps they are seeking something a little bit more noninvasive at to begin with. And text becomes an an opportunity to really teach us some things in our space, right, about our traditional modalities, right, and where they fit in the spectrum of grief. Right? But to answer your question of how help text came to be. So like many people who come into enter into the space or who develop products or services, it starts with a grief story. Right? Mhmm. So Emma Payne, had her husband die from suicide. And like many families who experienced the loss of a suicide, all of her friends and family failed to show up for her. But it wasn't because they didn't care. It was because they didn't know what to say or do. And we see that time and time again. Right? Just whenever it is a suicide, a homicide, a traumatic death of some sort, and friends are at a loss for words.\
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Dr Melissa Lunardini: They don't really know what to say or do. And so that gap. Right? And it still is a gap, I would I would argue in some ways. Right? And so Emma really set out to fill that gap. What can I do to make sure that other grieving, you know, spouses or Mhmm? People don't experience what I experience. And so she thought Mhmm. What's the simplest way to communicate with people? And it starts with texting. It's non intrusive. It's really easy. It's tangible. It's practical. It's bite size. And so she built sort of this text based solution to this big global problem. And she thought, you know, starting out, I'm just going to send text messages with education tips and resources on how people can show up and support their grieving loved one. So just little gentle tips on what do you need to know when your person is grieving and how can you best show up? What are the practical things? What are what's something you could say or text to them? And so that's really the genesis of how this started, but quickly grieving people were reaching out and saying, wait, I need this support. Like, I'm struggling to find support in my community. I I think it's great that you're texting my family and friends, but, like, what about How\
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Dr Monika Wieliczko: about me? Yeah.\
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Dr Melissa Lunardini: Yeah. So then it quickly then shifted. The intention really was that, okay, how can we provide support via text for the griever while also providing support to their family and friends so that we can actually insulate that griever with this wraparound support? It's what researchers and practitioners have been asking for for years. Right? How do we educate the community so that the community can show up during the time of need? And this is one simple, effective way to do that. And that's how health techs move it.\
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Dr Monika Wieliczko: Yeah. So out of need for some way of connecting on a large scale, which is, you know, as you're saying, it's a global problem. Yeah. And one of the biggest issues that we face in grief is the fact that we're so disconnected. It's the fact that we haven't got that support system kind of bringing things together or saying the right things, offering the right information. And I think I'm always really shocked how little the average person knows about grief and what to do when someone dies, how to support someone else. So so I think as he's saying, you're addressing a fundamental gap within the education, but also social integration. So there's so much there already, how it kind of came about. And and I suppose I've got some ideas why texting, you know, as you mentioned, is is accessible. Everyone has a phone these days. Mhmm. And I can see why, you know, one message kind of puts some kind of almost an expectation that you have to be very clear about what your message is. You know, like, there's a limited number of\
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Dr Melissa Lunardini: Yes.\
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Dr Monika Wieliczko: Words you can use, you know, like, it's very different to receiving an email, for example, which is another form of, I suppose, way people communicate, but you probably get hundreds of email a day. So it can easily be missed. That's the kind of the first thing I'm starting to think about when I think about texts. And but but can you say a bit more what's the idea behind text and how technology can support the grief education?\
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Dr Melissa Lunardini: Yes. I mean, we there was a quite a few things that that led to the vision of doing text. First and foremost, that it's cost effective. It's one of the most cost effective things, like methods of delivery that you can actually engage in. And text was Mhmm. Chosen also because it's people's preferred type of communication. Right? Like, think of us even now. I would much rather have somebody just send me a quick text than to jump on a call or, you know, answer an email or even Mhmm. Mail. Right? And so we now have had this paradigm shift even in our preference of of the way that we like to be communicated with. And so it just really falls in line with our preferred style. Right? And I think that because it's what we call in our industry, it's it's low threshold.\
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Dr Melissa Lunardini: It's low burden. It doesn't really require much of the person who's grieving. Right? All they do is receive, And they can and then there's so much autonomy there. They can choose when they want to look at the text, when they want to read the text. And\
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Dr Monika Wieliczko: Yeah.\
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Dr Melissa Lunardini: It also sort of, you know, gives them enough time for reflection. And that's one, I think, one of the bigger difference. Right? When you're in session with somebody, when you are providing one on one support or in your group environment, you really need to be on. You need to be ready to respond and ready to have kind of your answer, ready to offer the emotional support to other group members, for example. And what if you're not on that day?\
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Dr Monika Wieliczko: Mhmm.\
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Dr Melissa Lunardini: What if you're not really in a space or capacity to do group that day or or attend that session? You know, then what? It doesn't mean that you don't need the support. It just means that in that moment, it doesn't align with where you're at. Right? Sometimes. Right? And and text really gives you the flexibility to say, hey. I'm gonna read that later, or I'm gonna look at this right now because I need it right now. So this sort of on demand access piece is also a critical way of why text was chosen.\
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Dr Melissa Lunardini: Right? So we hear often people saying, when I can't sleep at 2AM, I break out my phone and I read back through the texts that were sent. And it's of the lifeline that I need at 2AM. And there there is sort of this neuroscience also behind why texts is so compelling, and and I would argue really underutilized in a lot of spaces. And it's because we know that there is some research from SMS brands, essentially, that say that we know that 98 of people read their text messages within three minutes of receiving them. So it's a very high engagement rate, meaning that that we know that when a text is sent, the likelihood of somebody seeing it almost instantly is really high. And we also know that text message, unlike any other form of communication, that includes email, reading materials, you know, a call even, will put our brain into a dopamine loop. And and so what that suggests is is that is that when people are reading a text, sometimes the uncertainty of when the text is coming, it kinda has a surprise effect on people. Right? Even though our texts come twice a week at noon, but still, if you're not if you're not registering that it's coming at noon, it's a it's like it's just a surprise. Right? And so in that regard, because it sort of looked your brain looks at it like a surprise, a text can make you feel unexpectedly cared for, and it can feel like a hub for those who are grieving. And then the other thing we know about dopamine is that it's tied to motivation. So many of our texts suggest that, you know, what can you do to cope in this moment? We might offer a breathing exercise.\
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Dr Melissa Lunardini: We might offer a grounding exercise. We might we might suggest something that they can do right now in the moment, and the likelihood of people doing that in the moment is really high. It's higher than Mhmm. Again, if you were reading that breathing exercise on a pamphlet, for example, or if you're reading it online, for example, you're less likely to do it in the moment than you would be if you if the texts suggested that you do it in the moment. And we see that time again. People are saying, I just did that breathing exercise, or I'm going to implement this stop technique next time that, you know, I'm feeling really anxious. So we see sort of in real time behavior change, which, you know, for for research purposes and for practical purposes as clinicians, we've we that's what we aim for. Right? We aim for what is impactful in the moment in real time. What's tangible.\
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Dr Melissa Lunardini: What can somebody do and what can they remember to do the next time they're feeling overwhelmed in their grief? And texts really just provides this very gentle, direct way of suggesting how they can do those things in these moments of distress. Sort of all of the reasons, I guess, why I would say texting was chosen as the primary mode of communicating.\
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Dr Monika Wieliczko: Yes. Interestingly, I did sign up actually to the messaging system. I think it was not long after we had our first call and we received a few since then, a few messages. And you're you're right about the surprise element because I didn't register it to come at noon, to be honest. But it does give you a sense of, okay, I can take it in. I can read it when I'm doing something else. It triggers a thought process. It's a bit like someone having conversation but in small chunks with you. That's the kind of the feeling I'm getting. But can you say a bit more about how you decide which messages to put in, you know, because it's actually it sounds like a, in a way, simple thing.\
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Dr Monika Wieliczko: Just write a message to someone, but I suspect there's a lot of thinking that must go into. What kind of information do you send to people? And how do you decide, you know, how do you because I know you also can personalize it because it asks you the specific questions on on when you fill in the form. Who was the person that you've lost? What was their relationship with them? You know, all all those kind of important dates. I mean, I was quite struck how detailed it was and how much you can actually share. And I actually had my birthday yesterday, and I had a text in relation to my birthday and how this event can affect my grief. And, you know, so it was really interesting how that kind of comes about. So, yeah, could you share a bit more about what's behind science behind it?\
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Dr Melissa Lunardini: Yes. This is probably the number one question that we get asked all the time. Is AI creating your text messages? Is what we get asked. Or as a real person, how are these text messages curated? And the answer is is that, you know, we don't believe that it's our philosophy anyway that that not one person or entity has all of the source of wisdom that people need. Right? So so we have taken approach of Mhmm. Let's learn from the world's top grief experts about grief and loss. What are the pieces of wisdom that they have to tell the people that they work with over and over and over again? You know? Let's find the experts who specialize in child loss, spousal loss, parent loss. Let's let's find the experts who specialize in suicide, homicide, cancer, you know, pregnancy loss, for example. So so we have this massive list of expert contributors, and we work with them. They give us either through their books, their research, or just their own direct experience working with bereaved people. And so work with them and and they give us concepts. And then we do create the text on our end because we need it to, you know, fit into a very special kind of formulaic way that we we're trying to be mindful of pronouns. And we're trying to be mindful of reading levels. We're trying to be mindful of not using a ton of analogies because some of some analogies don't translate well into other cultures, for example. Mhmm. And we're also trying to be mindful of just general translations and how how that might come across. And so so our team does basically take wisdom from all areas of the world, and then we distill it down to sort of the bite sized piece of of wisdom. And it can take a couple hours sometimes to create sort of, like, the perfect text that covers that concept. Mhmm. I mean, we have thousands and thousands of messages in our system, and you're right. So the user form, which is what we call it, will ask you a series of questions. We wanna know about a little bit about you and your relationship to your loved one. The more information that we have, the more customized the text can be because then it tells our system, oh, this person actually meets the criteria to receive this particular text message. And so, you know, if we know that that you're a a widow and you lost your spouse and you have a child at home and you let us know that, we then can send you resources about how to support your grieving child in addition to supporting your own grief and loss because you've lost a spouse. And if we know sort of when they died and then we also know when you signed up, we then can actually make sure that you're getting texts that are appropriate to the timeline in which you're grieving.\
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Dr Melissa Lunardini: And so, you know, sometimes a large majority of the people who sign up for our services sign up within the first six months of being bereaved. Right? So we would say in our our space, right, that, that's really acute grief, right? They're they're sort of in these early phases of really just trying to survive every minute and moment and needing a different type of support than than you would need if you were a year out or if you were two years out or Yeah. Forty nine years out. So our system really accounts for that. Right? And so So early grief. Yes. What are the things that you need to hold reminded of and what are the resources that you need to be, you know, provided when you're grieving in the first few weeks or to the first months of your loss? And that that will look different than, you know, the later half of the year and moving into the year two and so on. Right? Absolutely. So we use sort of these experts, and we work with them collaboratively to generate these text messages just based off of the wisdom that is already existing in the world for for many, many, many, many years. Right? And and that's how we've landed on some of these. Right? Like, what would be helpful to a griever on their birthday? Right? What kind of message would be helpful to for a griever to receive on their birthday? And and how do we acknowledge them in a meaningful way during those days? And we do that with holidays. If they let us know what holidays are important to them, if they have an anniversary, we'll reach out. If they tell us their loved one who's died's birthday, we'll reach out on that day. The death anniversary, we'll reach out on that day. So it's all of those it's all of these little things, and we know that that's one of the biggest limitations in our space. Right? We we as professionals who are offering support, we don't have the capacity to reach out on important holidays and important dates. Right? So often and but we know that those are the the hardest days.\
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Dr Melissa Lunardini: Right? And we're basically just hoping that the person's support system is going to show up that day, where help texts basically not only if they have supporters signed up, we will text supporters and be like, hey. This is a reminder. This day is really important. Here are some things that you can do on that day. And we're basically soft launching them to to reach out. We're basically giving them permission to reach out by prompts. On how to do it. Right? One of my favorite stories is with a woman named Sarah, and her dad died. And she signed her husband up for support as a supporter, and she never really looked at what messages her husband was getting. But she knew that they were working because when her dad's birthday came around, her husband made a reservation at her dad's favorite restaurant. And so when she reached out to us, she was like, yes. Your texts have been really helpful for me, but I can't tell you how this has helped saved our marriage. And that, you know, I know I know that this wasn't his idea, and I know it had to come to you come from you. And it's like, well, yeah, we, of course, we, of course, sent a message saying consider doing this because it will mean a lot, possibly. Right. And and so that is a good a little example of how we sort of triangulate or the support around the grieving person.\
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Dr Monika Wieliczko: So a little kind of guidance that can go a long way in terms of, like you're saying, giving permission is one thing, but also empowering people to take actions that, you know, you know, from research or from practice are important, like anniversaries, for example. You know, it's it's a classic example of when things go wrong, when people don't feel supported. And one of the biggest issues, I think, globally for every person grieving is this this worry that they're left with carrying the burden of remembering and holding the memory of the person who died, especially when there's a significant loss, like a child loss or a partner loss. You know, I think these are particularly important because the closer the relationship to the person who died, the more there is an involvement and and shared life and, you know, all these factors, I think, influence it. So I remember late last year when it was my late husband's death anniversary, and I was struck that I didn't really post anything on social media that day. And I think apart from one person, two maybe two people, not many were able to hold him in mind. And and I think that really left me with that really kind of uncomfortable feeling of being quite angry that it's not like I'm expecting everyone to remember it. But, like, gosh, this was his death anniversary and it's only been a few years. Like, it why isn't anyone remembering holding it with me? And it's not that they didn't remember.\
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Dr Monika Wieliczko: I'm sure they some of them did because, you know, for a lot of these people that that was such an important day, but they didn't think of reaching out to me, which, you know, it was interesting. You know, maybe they thought similarly that someone else should have reached out to them. Maybe I should have reached out to them. But there's this kind of disconnect, I think, which is so heavy on that day because all you wanna know is that someone hold you in mind. And I can see how technology can be really effective in facilitating that. And as you're saying, just just a little prompt like you you know, that joke about it saved my marriage, you know, that my partner was receiving all those texts. But I think it actually says much more than that. It says that the person feels held in mind and, you know, it's a shared experience then of grief rather than having having an experience of being completely isolated. Yeah. So that's that's really quite a meaningful, as you say, such a simple solution in many ways to just a prompt. It's automatic process in place, isn't it? Once you fill in the form, it's there in the system for a whole year, you said. It's that's how long the program lasts, the whole year.\
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Dr Melissa Lunardini: Yes. Yeah. I mean, it can go beyond the year. We have people who are on their fourth year of receiving texts, and they never receive a repeat text.\
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Dr Monika Wieliczko: Oh, I see. Wow. How big is the the database?\
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Dr Melissa Lunardini: Oh, it's it's quite large. As you can imagine, there are thousands and thousands of text messages basically are in there, and we add text messages every day. We have a content team that is responsible for adding new text messages. And again so a good example of this is, you know, some of your listeners may be familiar with Mary Frances O'Connor's The Grieving Brain, which really sort of made a big impact, I would say, in our space when the book came out if especially if you you didn't do a lot of research on your own. You know, The Grieving Brain really sort of normalized a lot of what grieving people go through\
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Dr Monika Wieliczko: Yes.\
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Dr Melissa Lunardini: And helped kind of contextualize, oh, you know, grieving is a form of Lunardini, and it actually takes the brain quite a while to, rework itself to understand that my loved one is actually no longer in proximity with me. Right? And and so my brain has to do the work to relocate them. Right? And many many other findings. Right? But a good example is she now has, that just came out or it's coming out soon, the grieving body. Right? So how does grief your body and all of the systems that happen, you know, that have to work in coordination while you're grieving. Right? And so what I love about a platform like this is that text has the ability, unlike any other platform that I'm aware of, to literally eliminate the research to practice gap because we have a you know, we already have a the book in advance of The Grieving Body. So our team was able to go through it and already curate texts in advance of the book launch. And so when the book goes live, people are gonna instantly start receiving texts about how grieving impacts your body and what are the things you can do when you are grieving and your body is feeling all out of sorts. And in addition to, like, encouraging people to read the book, we also just basically break the book down in bite sized manageable pieces for people to absorb. Right? And so Mhmm. It becomes a really great way for people to get literally the latest best practices or the latest researcher, the latest information on how grief really does impact us and also our social world and everything in between really. Yes. So it becomes a way to get Yeah. You know, the latest and greatest pieces of work.\
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Dr Monika Wieliczko: Absolutely. And I'm so glad you're saying that because it's I think it's such a huge problem in, I suppose, grieving communities in terms of quality of information that we absorb, especially through social media. I think this is actually what we have in common with what I'm trying to do through podcasting and engaging a lot of researchers and organizations sound critical sound critical because I incredibly value lived experience of grief and I always encourage that side of things. But what I'm often seeing on social media is a huge amount of information that isn't necessarily reliable, isn't necessarily what you want to hear. And especially Instagram works a little bit like this kind of mirror that skews the perspective and provides you with information that you project out, which is, you know, if I'm distressed about something and I watch a a video that shows someone who has been affected by grief and they're crying, I will probably start seeing more of those videos or describing something that isn't necessarily true for my personal experience.\
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Dr Monika Wieliczko: So for example, this common theme that people say, oh, grief never ends. You you you never gonna stop grieving. And if we're in this acute state of grief and that is a good question that often comes up in social media groups and someone says, oh, yeah. I'm five years in, and I'm still feeling really crap. I mean, obviously, that's not we would expect someone to say. And we don't know what the context of that information is, but I think it's not something that's been curated or clinically or kind of almost, like, psychologically balanced in in its form, and and we absorb all that information. And a lot of the time, they're useful information, but there's also a lot of crap out there. So I'm really grateful that you mentioned that. And actually, we're gonna have we we actually recorded an episode with Mary Frances O'Connor on her new upcoming book, Grieving Body, which the release date is on the February 25. So it'll be the whole episode on that. And that is a really important mission on this podcast as well, to bring that kind of high quality, safe and sound information that people can follow and challenge some of those misconceptions that are floating around in the air. So I'm really glad to hear that you have been selecting, you know, people who know what they're talking about. They have their lived experience of grief, but they also studied and researched or had some kind of more than lived experience of grief. Yeah. It's useful to have kind of lived experience.\
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Dr Monika Wieliczko: And I also have authors who present on the podcast, but actually having that expertise is really important because we're talking about people's mental health. It's we're not just talking about sharing their experiences. It's it's about educating our communities. And it's not like we all have answers to everything, but the likelihood is if we gather a group of experts, that some of it will be at least you would think that some of it will be checked. You know? You have a higher chance of getting it right. And, yeah, I think that's what I really liked about your project, Melissa, that it is grounded in research and practice and like yourself, obviously, you're a psychologist and, you know, I think that that really says a lot, doesn't it, that we're not just sharing any information. We're actually checking what we what we're saying twice rather than just because that's the ethics of our practice, isn't it? That we have to be acutely aware of the impact of our words and our messages are having on people's lives. And and that's not something you would get from, a random person on the street who might have experienced loss, but they might not know much more about apart from their own lived experiences of loss. I think that's a really important caveat in terms of the basis of where we're coming from with this.\
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Dr Melissa Lunardini: Yeah. We have a very strict criteria of who qualifies to be an expert. And, you know, as you can imagine, we get a ton of lived experience people saying I would love to contribute. And the problem is is that lived experience, you're often just an expert in your own lived experience and not necessarily an expert in in looking at the the context of that lived experience through hundreds, possibly thousands of people's experiences, like people who like myself who've done direct service over the years. I've, you know, I've sat with hundreds, possibly thousands of people to give really big wider scope of what what does acute grief actually look like when it's in the first few few weeks, few days across a variety of different relationship loss and cause of death loss? Like, what does it look like to be, you know, grieving a cancer loss versus grieving a suicide loss? And only when you sit with people over and over again, are you able to start pulling out the very unique differences that happen. Right? And part of our criteria is to be an expert is that you have to have lived experience, but then you also have to have direct service experience in some capacity. You have to have been able to, and we have a year minimum, essentially. Right? Because we wanna be able to confidently call these people experts. Right? And we know in order to be an expert in anything, you have to sort of give about a ten year, you know\
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Dr Monika Wieliczko: Yes. I'm glad you said it.\
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Dr Melissa Lunardini: Your life to really be like, I have seen enough. You know? I've seen a lot. I have read a lot. I have studied a lot. I have been in this space a significant amount of time to where I can confidently say this person actually has enough experience to where I I really do value kind of their scope here and what they bring to the table. And so you'll notice that our our experts really do have a ton of experience that they're bringing to the table here. In addition to lived experience, I I don't devalue lived experience just like you. Like, it's so needed. It's essential.\
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Dr Monika Wieliczko: You know,\
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Dr Melissa Lunardini: it's it's it's odd to have researchers research something and they don't have a point of personal connection to it. Right? No. And\
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Dr Monika Wieliczko: and No. Absolutely.\
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Dr Melissa Lunardini: That doesn't help our field at all. Right? Because I think that there's an element of there's an element missing there also. Right? So it's it's it kind of and or. Right? Which is why we have the criteria of you gotta have both. It's it's not enough\
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Dr Monika Wieliczko: to have\
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Dr Melissa Lunardini: one or the other. It's it's you gotta have a blend of both. We want somebody to be able to say, like, I I myself know grief on what it looks like for me. And then I also understand from learning from lots of people what it looks like in broader sense. And so that's sort of how we derived our expert kind of criteria. And, yeah, we're real we're really proud of it. We think it it has created a very strong mode of of texts that can really resonate with a lot of people. And, you know, not every text message that somebody receives is going to, you know, resonate with them a % because, you know, just even in therapy or support groups, right, not every moment is going to resonate. But it's more about the entire like, the whole entirety of it. Do you feel cared for?\
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Dr Melissa Lunardini: Do you feel seen? Do you feel heard? Do you feel understood? Do you feel like something, someone is companioning you so you're not so alone in this process? And the answer is like our data shows, yes. We've got Mhmm. A few acceptability studies published in the Omega Journal of Death and Dying and also death studies with very sizable sample sizes. And when we survey people, and this has been repeated time and time again, even with different populations, ninety five percent of people who use text based support report feeling supported in their grief, and they believe that the text messages has helped them in their grief process. And we hear the amount of qualitative data, so what people are actually saying to us Mhmm.\
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Dr Monika Wieliczko: In\
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Dr Melissa Lunardini: terms of what is really helpful about the texts. We see these certain themes kind of populate over and over again. They like the timing and the personalization of the text. Right? So, like, people say, I really genuinely feel like, you know, whenever I'm feeling sad or anxious, the text will come at the right time is a feedback that we've received.\
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Dr Monika Wieliczko: Is it something about consistency then that it texts coming? Or am I understanding it right? It is something that it keeps coming because it's twice a week, isn't it? So it's in kind of every two or three days. Is that the kind of the roughly the rhythm?\
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Dr Melissa Lunardini: Yes. So it's rhythmically on time, but people somehow I think it's the way that we have and it goes back again to lived experience. Right? When you sit with enough group of new people, you start to know, like, what do quite a few people experience in the first week of being bereaved? And literally tag our text messages to go out in just that small window of time. Right? And so when people are are saying, like, it just seems like this text is so spot on for what I'm going through in this Monika, and it's because there's enough lived experience behind the creation of the texts. Right.\
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Dr Monika Wieliczko: So you're saying that when they join, the texting service, they they put the date in when the person died, so it's adequately adjusted to that time frame. Yeah. Okay. Now I'm getting it. Yep. Yep. Because I'm thinking that not everyone will join the first week or the first month. That makes a lot of sense.\
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Dr Melissa Lunardini: Yeah. We we look at time across two ways. It's time since your person died and then time since you've signed up. And so Right. Our our system considers both of those time frames. And so I see. So yeah. I mean and then people love like like, we receive texts that say, like, I just love receiving a text with my son's name in it. About how many times do we hear people say, like, I just I just wanna hear his name, or read his name. I it like, nobody says his name anymore. And to get a text with your loved one's name in it is so powerful. Right? It's it just instantly lets you know that, like, you are not alone in your grief and that somebody remembers.\
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Dr Monika Wieliczko: Yes. And there's something so powerful about that. Right? It's so simple and so incredibly powerful and healing for people. Right?\
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Dr Monika Wieliczko: Yes. And and I think what you're saying is also this element of of your support system. So the people who are involved in the project, you know, you're in kind of inner circle because you I think you can identify is it two people you can identify as your Yes. Support system? Yeah. So they hold that in mind. So it's not just the text because you could argue that some people might feel, oh, it's just a text. It's just the system that generates it. But I think what you're saying is it does something more than that. It allows other people to be actively involved and and helps them to play a role that you would expect them to in the first place. So it's not artificial. It's not something kind of that scripted. It's an actual intervention. You know, we could think of it like that.\
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Dr Melissa Lunardini: It is. Mhmm. We're texting the supporters saying\
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Dr Monika Wieliczko: Yeah.\
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Dr Melissa Lunardini: The next time you send a text message to them, try to put their loved one's name in it Mhmm. In some capacity. Right? It's it's so we're really educating and encouraging them to do the things that we know that matter most to grieving people. Mhmm. You know, here's the thing. It's like, I always think about it. We we often hear, like, grievers say, it's not my responsibility to educate my support system on how to show up for me. Right? Yeah. And that's very true. And it's there's a lot of pressure for grievers to educate the support system. But but, you know, on the flip side, I would also argue that, you know, it's a lot of pressure as supporters to remember all of these things. Right? Absolutely. You know, like, it could be a full time job once you're middle aged to remember everybody's loved ones who died and reach out in a timely way. Right? And so this really allows sort acts sort of like a personal reminder that prompts you and just kinda does the work for you so that you're not carrying in your brain all of the people you need to reach out to. You know? It's like the simple prompt will just help you stay on top of the things that you wanna do naturally because we I believe that. I believe that family members and friends want to show up in the best way they can. But they also have their own lives, and they also have their own responsibilities. And life gets tough for everyone, and they can't always remember every single person's, you know Absolutely. Birthday or anniversary or or death aversary or anything like that. Right? And so this really just sort of like this non intrusive way of being like, yes, please sign me up for all the reminders. I I I want I want to be prompted so that way I don't forget. So, yeah, I mean, it's it's just this really gentle way of of hand holding people to show up when it matters most. Right? Other end of this that is human and that cares and that really wants to be there to support them. And this is one way that we do that. I mean, other qualitative pieces that we hear time and time again is they love how texts validate their grief experience. So just feeling normal, right? Like, you know, we we we've got a text around how early on in grief, it's really normal to be super forgetful and misplace things. Right?\
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Dr Melissa Lunardini: I mean, it happens to all of us. Right? Like, overload or, you know, our grief has flooded our brain and we forget things all the time. And a woman texts back to us and was until she's like, until I saw your text, I thought I was losing my mind. I had made an appointment to go see my GP because I I I swear that I thought I was going crazy. But thank you for making me realize that this is just a normal part, and I can be more gentle on myself now. And it's, like, wild. Right? That just a simple texts instantly normalize this thing that happens to a lot of us. But because it's not we don't explicitly talk about it, it's there's no PSA around how we, you know, are super forgetful early on in grief. Perhaps you read it, perhaps you didn't, and perhaps it just didn't stick for whatever reason. But it's so common. Right? Yes. And to be able to normalize your simple text\
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Dr Monika Wieliczko: is just brilliant. Right? It's really phenomenal. But also, you know, the fact that, yes, you won't be able to absorb a lot of information when you're grieving. So you cognitively, you know, similarly to when I was going through this acute state, well, actually the first year, really, I felt like I had an early onset of dementia. Usually, I was joking about it, but it felt a bit like that because I suddenly couldn't couldn't process information, couldn't remember things, couldn't learn new things, and I could read. But, you know, it's just that your normal cognitive functioning is completely derailed. So I completely get why people might be able to receive, like, tiny bits of information and actually use it because it's selected for them. That's kind of ability to select, to process is reduced. So if you if you pick a few different things for them, you're more likely to get through to them, I think. I mean, it makes perfect sense because you you probably I mean, it will be great to read the whole book, but the likelihood is that initially you probably won't be able to or it might take a lot of effort and not everything will sink in. So Yes. I think that's one of the biggest obstacles actually with grief education. It's not the best time to learn new things, new tricks.\
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Dr Melissa Lunardini: It's so true. It's so true. I mean, I think that's why if you've ever sat with somebody in the first few weeks of grief, I mean, I always say, you know, it's like the lights are on, but nobody's home. Yeah. Right?\
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Dr Melissa Lunardini: You know, you can look at somebody in their eyes and you just see that they are they're present in front of you in session because they can't they don't know where else to be. Right? But it doesn't mean that doesn't equate to them retaining anything other than can we just breathe together?\
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Dr Monika Wieliczko: Just surviving.\
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Dr Melissa Lunardini: Yeah. Let's just let's just practice breathing together. And, you know, for a lot of people, it's their first time actually taking full breaths for that day or that week even, you know, it's like they really are an acute survival in a lot of ways. Right. And so how do we support them when they're that acute? It's through these little bite sized, very manageable, practical things that they can do. It's not it's not through, like, theory and it's not through, you know, trying to walk them through and giving them tons of papers to read later. Right? It's like those papers that we're giving them those leaflets and pamphlets, they are I mean, you might as well just be throwing them right in the trash for a lot of people. You know, perhaps some people will read them, of course. And we always we always tell people, right, give it to your closest family member or friends and have them read it and kind of piece meal that information to you as a as a way because we know that people just are not often sitting down and digest the reading material that is put in front of them. It it goes with the stack of all of the sympathy cards and all of the bills that need to but you just can't. You cognitively can't. Mhmm. And and so, again, it just it's taking all of that good information because it's all good information in there, And it's literally just breaking it down into a text. And and then instead of having you read it in one big sitting, we're just sending it to you. You know, you read a little text twice a week and it's a very powerful way. Yeah. We got a text inbound text of somebody again, because we're we're always talking about coping strategies. Right? We wanna give people as many tools as they can or reminders to take care of themselves as they can. One woman texts back and said I feel more relaxed after receiving a text because it reminds me to focus on myself and do self care and then she gave examples like cuddling my cat, drinking tea, playing a game, or even booking, a really needed appointment. So like the text has a way of almost interjecting enough and pausing the sort of the chaos around you enough to to actually go back to like, wow, what does my body need right now? What do I need right now in this moment that I'm not really giving myself? And this text kind of gives you enough pause to think about that.\
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Dr Monika Wieliczko: Absolutely. I think what you're really covering is those kind of obstacles that people often find. So whether that's cognitive, like we talked about, ability to process information or just the kind of the chaos of life when someone dies and having to focus on so many different things and neglecting themselves. So there are kind of obstacles that people, I think, experience that prevent them from seeking professional help or just even, like, thinking they might need it because I think a lot of people just don't they don't really know what they need or what they what they should be doing. So I think that there's so many things day to day that, as you're saying, two thirds of people don't access counselling or a non social group for widows.\
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Dr Monika Wieliczko: It's kind of at least in The UK, it's about fifty fifty. So it's a bit higher because it probably accounts for complexity of the loss, but it's still 50%. Well, what happens with the other 50? What kind of support do they get? But also knowing that some people are just in such isolated environments and they might not have access to, or they might not even know that they can go to a GP and ask for a referral for counseling for grief counseling. Not everyone knows that. That's actually available through GP surgeries. Anyone's, I think, can get, I think, it's at least six sessions of counseling in The UK. So, I mean, I'm not saying that that's enough. I think it barely scratches the surface in some cases, but but it's there, you know. It's a it's a starting point. And and all these things are not widely accessible to people. Not not most people don't know, which is partially why we're doing this podcast is to really share the knowledge, share the resources that we all have. And I'm very keen on just collaborating with different organizations to kind of to bring this all together because I think it's the only that's the key to breaking this barrier to grief education is if we all collaborate together and actually support each other with reaching, you know, wider communities and how that's how you can influence the change, the social change. And I think that's also what you've been sharing with us today, this whole idea of, you know, how we can involve the support system to support the individual who's going through grief. Because obviously, later down the line, that person will be going through their own grief if they haven't had experienced that before. So you're almost like preempting that and educating them about those different things that they can do and and teaching them about grief and how it can affect the person who's grieving. So so I think it's it's a wider project which could have, you know, an incredible positive impact and and and bring social change. So, I'm just kind of the more I listen to you and how you describe these things, obviously, it generates thousands of ideas in my mind about how we can think similarly about how we just communicate with people who are grief. And just kind of the consistency of our presence is key as well.\
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Dr Monika Wieliczko: I mean, we can take a lot from this conversation, how this project's been designed that, we can understand the needs and and the kind of the basic rules of of grief support that you've been able to apply that, you know, we all can take from it and and take part in it. And just to say that so it's Sue Ryder website that provides it for completely for free in in The UK to anyone who's grieving. So we'll put it in the show notes, the link to where to sign up. I know that in other countries, other countries are not as lucky as we are in The UK. But finally something something better than everyone else. But I'm kidding. But but it it it's it's a great resource. So I, really think more people should know about it. But in other countries, it's also accessible because I know that a lot of listeners will be from US, from Australia, from other countries in Europe. So they are available in different languages you mentioned earlier. So it's something that we also can put a link in show notes for help texts and and how people can access them. And it's been such a incredibly valuable conversation, Melissa, and I'm so glad we we managed to dig into all those areas of grief and how to communicate, how to show up for people who are grieving, but also, you know, how to engage community and thinking about grief. So I really, really enjoyed this conversation. Thank you for joining us. I hope you found it useful. Connect with me on Facebook and Instagram under Guide to Afterlife for more grief tips and resources. Visit GuidetoAfterlife.com to send me your questions and to take part in the Grief MOT, your free first aid program for grief. See you next Tuesday for yet another stimulating conversation.\
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Season 2, Episode 5: Breaking Barriers: The Power of Text-Based Grief Support with Dr. Melissa Lunardini, Chief Clinical Officer at Help Texts.

The Grief MOT

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