[00:00:00] Krissy Dilger: Welcome to the SRNA “Ask the Expert” podcast series, “Research Edition.” I’m Krissy Dilger with the Siegel Rare Neuroimmune Association. This is the second episode of “Parenting is Hard,” a mini-series exploring an often overlooked but deeply important topic, the experiences of parents raising a child with a rare neuroimmune disorder and how this impacts their other children. Joining us for this special series is Barbara Babcock, family therapist with the UK’s National Health Service. Barbara has conducted insightful research into how parents navigate the needs of their non-diagnosed children alongside those of a child with a rare neuroimmune condition. Through this series, she’ll share her findings and offer guidance for families facing these unique challenges. Barbara holds a Master of Science in Family Therapy from King’s College, London and a Master of Arts in Touching Psychology.

[00:00:59] You can find her full bio in the podcast description. SRNA is a nonprofit focused on support, education, and research of rare neuroimmune disorders. You can learn more about us on our website at wearesrna.org. This episode is moderated by Rebecca Whitney and made possible in part by the generous support of Amgen; Alexion, AstraZeneca Rare Disease; Genentech; and UCB.

[00:01:29] Rebecca Whitney: So, thank you, Barbara, for taking the time to lay that framework of your research and those themes that you identified. Can you tell me more about the families that were participants in your survey and your research, as well as what the diagnoses were of the children? What was the extent of their parents’ involvement in their medical issues? Because I know it can range with these disorders. Some are severely impacted and require multiple healthcare providers to help oversee their care, whereas others may not have quite as much involvement. So, if you can speak to that a little bit, I think that would be great. Well,

[00:02:25] Barbara Babcock: Well, the recruitment, I recruited through the Transverse Myelitis Society and the Facebook group for parents of children with these rare neuroimmune conditions. And it’s a Facebook group that was started by Margaret Shearer who used to run the Scottish, the support group in Scotland. And she started that. And so, I’m a member of that group. So that was a logical place to put it in an advertisement. So, with this research, family self-selected to participate. So, they contacted me and said, I would like to participate. I would send them a participant information sheet. If they still wanted to participate after that, then they had to sign a consent form. And so, when I talk about the families, I’m going to talk about very general. And the purpose of that is to maintain confidentiality that I don’t provide identifiable information. The people who participate, there were six families, and they were white British or white other. They were heterosexual, they were couples, you know, a man and a woman with, you know, two or three children. All fathers and four mothers worked full time and then two other mothers worked part time. Five of the families had two children and one had three.

[00:03:56] So, and in two of the families, the younger sibling was born after the elder child became ill. And so, at the time of the interview, children were aged between 4 and 16 years old. So, we actually had a good range where you can see how the age of the child impacts how they respond to things.

[00:04:24] So of the children who had a rare neuroimmune disorder, they were between the ages of seven and 16 at the time of the interview, and the siblings were between the ages of four and 14. And so when you think of the different illnesses, there were three with acute flaccid myelitis, there was one with ADEM, and there were two with transverse myelitis.

[00:04:53] And there were a range of disabilities. Some had a higher level of care, required more caregiving than others, for example. Some could have, say, be under 10 different specialists, another maybe under three. So, depending on the level of disability. Purposely I’m not going into the level of disability to protect confidentiality.

[00:05:23] And then in the interview, I interviewed five mothers and one husband-wife pair. But the other participant was me. And I think it’s important to mention that because I mentioned in the first episode about this was a qualitative research project where I conducted these semi-structured interviews. But what about the interviewer and my bias and what I bring to it? So, I am a white female. I am middle-aged, middle class with working class roots of working-class immigrant roots, middle class, I’m educated. I was raised with a religion, but I don’t practice a religion now. So, there are different things that I bring to this. The other component I bring to this is I am not a parent. I didn’t have children. So, what does that mean for me as a researcher? Well, parents think Barbara doesn’t get it. She doesn’t really understand.

[00:06:33] And that might very well be the case. That could be a constraint in the research process. On the other hand, with the first theme, as we’ll see, it was an affordance. There was a benefit to not being a parent because there are some things I don’t take for granted or I just don’t know. And I’m like, well, why? Why would you do that? What’s important to you about that? And that was actually pretty powerful that, you know, yielded some rich information that came, that started to come from parents. So, with anything, there are benefits and then there are some constraints as well.

[00:07:16] Rebecca Whitney: Of course, of course. And I really, I really think you coming at it from this very unique perspective personally is something we haven’t necessarily heard before. And so, I really do appreciate that fact. But absolutely, I can see where it would be both a benefit and a potential drawback when speaking with families because it is so, it’s more empowering sometimes for families. Again, speaking personally, when the person you are speaking to can identify with you without having to be so descriptive or vulnerable. Because I think when it comes time to actually describe some of those experiences, it does make you incredibly vulnerable to put words to those feelings that are so, so much a part of your everyday and your being that it can be, difficult to open up and share with someone who, who can’t understand. So, so I appreciate you being very candid about, about you, your biases and the different perspective that you are bringing as the interviewer.

[00:08:58] Barbara Babcock: And that’s a really crucial bit of this kind of research is being very aware of your biases and how that could be impacting the research process. That brings rigor to the research and makes it more understandable as to why maybe I came to the themes I did, because this is like coming to these five themes at a point in time. If you had read through the research, you might have identified different themes, you might have made different connections and so that’s why I’m really clear about “this is my background, who I am, where I’m from, this is what I bring to it.” Yes, yes, thank you. But I think it’s one thing I did really want to highlight in talking about these themes is there is something around you know being honest and you when you talked about vulnerability and there’s that vulnerability that honesty it’s hard because it makes it real and just reminds you how real it is and I think it’s so important to talk about that because it normalizes what we experience, we do find out we’re not alone there are others out there.

[00:10:22] And I also think it’s important that we talk about the good stuff too. Kind of like what I mentioned in the first podcast, we don’t focus enough on the strengths, what we’re doing well. And as parents listen to this, I really want them to hold so much compassion for themselves, their partners, if they have one, for their children.

[00:10:49] Because in this work, it’s not about saying, “Oh, as a parent you need to do this”, I’m not here to do that, that’s the last thing I want to do. It’s more about supporting you know parents and families to become more comfortable with holding the tensions between what can oftentimes feel like contradictions. Learning how to live with the uncertainty safely enough. Kind of think about what does a good enough parent look like for me and my family and really think about how we can resource ourselves as a family individually but also as a family and just holding that in mind as they listen to all of this.

[00:11:33] Rebecca Whitney: Well, I have to say I have goosebumps. I really think identifying how we can use this and share this information for families to feel better about themselves is so important. It’s so important. yeah, hopefully be more vulnerable with sharing their stories and experiences as well.

[00:12:04] Barbara Babcock: Yeah, so it is so important.

[00:12:07] Rebecca Whitney: Yes. And again, I thank you so much for your work in this community and being a member of this community. So, thank you so much.

[00:12:19] Barbara Babcock: You’re very welcome.

[00:12:24] Krissy Dilger: At the end of this mini-series, we will host a Q&A episode where Barbara will answer questions from the community. To submit your question, please visit srna.ngo/submit. You can also find this link in the podcast description.

[00:12:44] Thank you to our “Ask the Expert” sponsors, Amgen; Alexion, AstraZeneca Rare Disease; Genentech; and UCB. Amgen is focused on the discovery, development, and commercialization of medicines that address critical needs for people impacted by rare, autoimmune, and severe inflammatory diseases. They apply scientific expertise and courage to bring clinically meaningful therapies to patients. Amgen believes science and compassion must work together to transform lives. Alexion, AstraZeneca Rare Disease is a global biopharmaceutical company focused on serving patients with severe and rare disorders through the innovation, development, and commercialization of life-transforming therapeutic products. Their goal is to deliver medical breakthroughs where none currently exist, and they are committed to ensuring that patient perspective and community engagement are always at the forefront of their work.

[00:13:43] Founded more than 40 years ago, Genentech is a leading biotechnology company that discovers, develops, manufactures, and commercializes medicines to treat patients with serious and life-threatening medical conditions. The company, a member of the Roche Group, has headquarters in South San Francisco, California. For additional information about the company, please visit www.gene.com.

[00:14:10] UCB innovates and delivers solutions that make real improvements for people living with severe diseases. They partner with and listen to patients, caregivers, and stakeholders across the healthcare system to identify promising innovations that create valuable health solutions.