Legacy Building Research Study

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One of the most important roles as a child life specialist is to support children and families during the end of life stage. With developmentally appropriate language, creative arts, bibliotherapy and play, we help families during this grieving process. Therapeutic interventions like legacy building is often used. This is creating lasting memories for the families and fulfilling wishes of the child, such as ceramic hand molds, prints, photos and videos.

A child life colleague of mine, Korie Leigh is doing a research study on the use of legacy building with bereaved families. If you are interested in participating or know of a family that may like to volunteer, please forward the information to them. The information will help support the value of this service in our field.

Eligibility includes that the death of a child occurred within the past 5 years, that at least one member of the immediate family participated in the creation of legacy building items, and that there are siblings in the home aged (4-18) which either also participated in creating the legacy item OR have used the item in their bereavement process (eg as a transitional object or as a way to remember their sibling)

From Korie:

Dear Prospective Participant:

I am writing to introduce myself to you in hopes that you may be interested in a research study I am conducting for my doctoral dissertation.

I am a Certified Child Life Specialist and bereavement counselor with over 10 years of clinical experience working with children and families in hospital and healthcare settings. Most recently, I was the bereavement coordinator and child life specialist at the George Mark Children’s house ( a pediatric palliative care house) from 2011-2014 and am now a graduate professor of Child Life studies at Mills College. I am also a PhD student at the California Institute of Integral Studies (CIIS) in San Francisco, CA.

I am conducting research for my dissertation, with bereaved parents and siblings on their experience of creating hand or footprints, taking photographs, or creating any keepsake items when your child was at the end of life. I am also interested in how those items may be currently used by you or members of your family. This study has passed the internal ethics review at CIIS and I am ready to move on to recruitment of research participants

This is an interview-based study where I would record and conduct an in-person interview at your home, with you and members of your family. Parent and adolescent interviews are expected to last between 60-90 minutes and young sibling interviews should last from 15-45 minutes. There may also be brief follow-up contact with each family, not to exceed 30 additional minutes, most likely by phone.

I would like to emphasize that this is a voluntary study. You or members of your family are under no pressure to enroll in the study. Also, if at any point if you choose to participate in the study, your entire family or an individual in your family would like to withdraw, you may do so.

If you are interested in the study or would like more information, please email lbg@gmail.com or call (201) 841-6034.

Thank you for your time and consideration,

Korie Leigh, MA, CCLS, CT

PhD Student, Primary Researcher

California Institute of Integral Studies

Related Posts:

Helping Kids Understand Death

ChiPPS Pediatric Palliative Care Newsletter

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