Hi All, Anyone else out there by chance studying the concept of "legacy," whether the ways in which it is understood or enacted in various settings? Especially in healthcare or with children? Would love to connect.
Hey Jessika!
I work for Methodist LeBonheur Healthcare in Memphis in the Hospice Division. We have a program here called QoLA Kids (Quality of Life for All Kids) which is the largest pediatric hospice and palliative program in the US, serving patients from both LeBonheur Children's Hospital and St Jude Children's Research Hospital.
Legacy work is a cornerstone of this program. As far as we've been able to determine, we are the only HOME hospice and palliative program employing a full-time Child Life Specialist. Other disciplines also participate with families in legacy work, but it is a primary function for our CLS.
If any of this sounds useful or of interest to you, I'd be happy to connect you. I have previously served as a nurse on the QoLA team and now work as the QAPI Manager for the Hospice. Of course I could provide you with contacts at either hospital if you are looking for inpatient resources.
Best of luck to you! i just returned from a conference with Matt Peachey at al from Vandy and am willing to support my neighbors if possible!!
Pamela
Small world @pamelashreve! I used to work as a child life specialist at St. Jude. I actually worked at St. Jude when Joanna Lyman did, and she was my office mate :). I know Stephanie Lindblom too - she was an office mate of mine at one point as well. So far my research has suggested that we are missing the mark when it comes to legacy work according to patients and families. What I've found so far and what I hope to continue investigating and arguing is that legacy work is about the experience we facilitate for families to connect with one another, rather than the products they create. My next study is going to be the perceptions of bereaved families and the ways in which they describe their child's legacy 1-5 years after the child's death. Are you guys by chance tracking any of the legacy services you provide or doing any kind of service evaluation with families? I am curious what kinds of feedback you have gotten. Thanks for reaching out - I'm excited to have a new connection!
We ARE doing some of this. Two planes that come to mind... The first is still in its infancy, and that is through our Family Partners Council. Our adult patient population is much better represented on this board, but we are starting to see some peds families filtering in. The second is through our ongoing Grief Support Groups; I'm not well versed on this AT ALL. LOL! Mark Smith here is the man with the most info about both. He could also probably link families who appear year after year at the memorials to those who connect at the support groups or even at Camp BraveHearts. IDK?? Not sure that he is measuring anything by research standards...
I worked at Baptist Hospice for a bit and I know they have some similar ongoing resources through the Center for Good Grief.
It's been my experience that the smaller disease specific resources are far better at providing this specific type of legacy support, family to family, than anywhere else I've personally witnessed. For example, we have a Batten's family presently on service. The first child died about two years ago and the second child is entering the end stage of her disease. This family attends the Batten's national conferences twice a year, acts as a regional resource for newly diagnosed families, conducts legacy work through the Center for Good Grief, etc. I can think of several other families providing or receiving similar support in their disease community, but only when it's the smaller/rarer diagnoses.
I'm not sure I'm being of any help! HA!! I think it's great work you're doing and we certainly have a great pool here that could be of use to you. Let me know if Stephanie or I can help in any way. My direct email is [email protected]. If you want to reach out I can send you the rest of our contact info or plug you in with anyone else here that may help your research along.
Have a good night!!
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