What is a Child Life specialist?

Transcription

1 Celebrating Life: Legacy Building and Memory Making in Pediatric Health Care Megan Cassani, MA, CCLS, CIMI Ranken Jordan Pediatric Bridge Hospital What is a Child Life specialist? in the midst of sadness and worry there is always something that someone can do to bring a ray of sunshine into the life of others. PROCEDURAL PREPARATION AND SUPPORT PROMOTE POSITIVE COPING MEDICAL PLAY NON-PHARMACOLOGICAL PAIN MANAGEMENT DIAGNOSIS EDUCATION SIBLING SUPPORT SCHOOL REENTRY GRIEF AND BEREAVEMENT SUPPORT 1

2 Agenda: What is legacy building? History & Current Trends Common Legacy Building Interventions Family Perspective Video Implications for Practice Questions something transmitted by or received from an ancestor or predecessor or from the past 2

3 Legacy Building A means for continuing bonds Legacy in the form of producing tangible items has been found to infuse meaning, purpose, and satisfaction in life for children with terminal illness (Clutter, 1991). Understood as the creation of tangible items at the end of life, to aid in promoting meaning making for the dying individual, while also providing support to family and friends (Allen, et al., 2008). Doing or saying something that is remembered, including both intentional and serendipitous legacies (Foster et al., 2012). Why offer legacy building interventions? - Benefits the child - To honor the ongoing relationship with the bereaved and deceased. - The continuation of bonds produced through legacy building activities, often provides a source of comfort for survivors. - Helps the survivors find new meaning in their relationship with the deceased. Death ends a life, not a relationship. 3

4 History of Legacy Building - Designed for adults - Meaning-based coping - Life-Review - Dignity Therapy - Family-based interventions Common Legacy Building Interventions 4

5 Beads of Courage An organization dedicated to children with serious illness. It encourages children to record, tell, and own their stories of survival. Research shows that patients/families that participate in a hospital bead program display less illness-related distress, increases use of positive coping skills, helps children and families find meaning in illness or injury, and provides a keepsake a child can use to tell their story. Applying Legacy Building to Practice: - Introduction of legacy building - Beginning of diagnosis versus time of death - Family Participation - Survivorship 5

6 How do you make memories with babies? - Naming the infant - Experiences - Religious rights of passage, holidays, milestones, family traditions - Tangible items to acknowledge the infant was real Case Study- Celebrate Everyday - 2y/o Female - Congenital hear defect and traumatic brain injury - Legacy Building Interventions introduced at birth -Hand/Foot prints -Monthly photos -Locks of Hair -Patient art -Memories and new experiences 6

7 Who do legacy interventions serve? - Parents - Extended Family Members - Siblings - Friends - The deceased Family Perspective 7

8 -F 6/12/2018 Memory Making versus Legacy Building - When death is imminent - Create a sacred atmosphere - Person-centered practices - Research suggests to avoid legacy building interventions Case Study- When everyone has their own real and important memories - 16-year-old female - Death by suicide - Family and friends participated in creating memories at time of death. - Hand molds - Finger print necklaces - Hand/Foot prints - Locks of hair 8

9 Perceived Negative Aspects: - Developmental differences in conceptualizing death - Handprints and molds at time of death - Hold experiences, not always positive. When he was dying, literally on his death bed they tried to make some foot prints and handprints. And those, to be honest with you, I looked at them when they first dried after he died and they remained in the box underneath one of our buffets down in the dining room. We don t even think about them, nor look at them, nor think anything about them. ---Bereaved Mother Implications for Practice Referral to Child Life Explicit introduction of legacy building at diagnosis Parents, siblings, and friends should be offered the opportunity to participate. Active participation can yield a lasting positive impact. The clinical focus should be on the process rather than the item itself. Parent and sibling agency during the creation of the legacy item should be enhanced by staff. The creation and fostering of a therapeutic relationship is essential in influencing lasting positive impacts on how the legacy item itself is perceived. If at all possible, prints/molds taken at death or near to death should be avoided. 9

10 Closing Q & A References Akard, T. F., Gilmer, M. J., Friedman, D. L., Given, B., Hendricks-Ferguson, V. L., & Hinds, P. S. (2013). From qualitative work to intervention development in pediatric oncology palliative care research. Journal of Pediatric Oncology Nursing, 30(3), Allen, R. S. (2009). The Legacy Project intervention to enhance meaningful family interactions: Case examples. Clinical Gerontologist, 32(2), Allen, R. S., Hilgeman, M. M., Ege, M. A., Shuster Jr, J. L., & Burgio, L. D. (2008). Legacy activities as interventions approaching the end of life. Journal of Palliative Medicine, 11(7), Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement, S., & Harlos, M. (2005). Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol, 23(24), Foster, T. L., Dietrich, M. S., Friedman, D. L., Gordon, J. E., & Gilmer, M. J. (2012). National survey of children's hospitals on legacy-making activities. Journal of palliative medicine, 15(5), Kempson, D., & Murdock, V. (2010). Memory keepers: A narrative study on siblings never known. Death Studies, 34(8), McClement, S., Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., & Harlos, M. (2007). Dignity therapy: family member perspectives. Journal of palliative medicine, 10(5), Meert, K. L., Briller, S. H., Myers Schim, S., Thurston, C., & Kabel, A. (2009). Examining the needs of bereaved parents in the pediatric intensive care unit: a qualitative study. Death studies, 33(8), Meert, K. L., Eggly, S., Kavanaugh, K., Berg, R. A., Wessel, D. L., Newth, C. J.,... & Doctor, A. (2015). Meaning making during parent physician bereavement meetings after a child s death. Health Psychology, 34(4), 453. Montross, L., Winters, K. D., & Irwin, S. A. (2011). Dignity therapy implementation in a community-based hospice setting. Journal of palliative medicine, 14(6), Radestad, I., Steineck, G., Nordin, C., & Sjogren, B. (1996). Psychological complications after stillbirth influence of memories and immediate management: population based study. Bmj, 312(7045), Suttle, M. L., Jenkins, T. L., & Tamburro, R. F. (2017). End-of-Life and Bereavement Care in Pediatric Intensive Care Units. Pediatric Clinics, 64(5), Tomlin, A. M., Weatherston, D. J., & Pavkov, T. (2014). Critical components of reflective supervision: Responses from expert supervisors in the field. Infant mental health journal, 35(1), Turner, J. C., & Fralic, J. (2009, February). Making explicit the implicit: Child life specialists talk about their assessment process. In Child & youth care forum (Vol. 38, No. 1, pp ). Springer US. 10