Commentary by Siobhan Devlin, PedPalASCNET Student Librarian
The Pediatric Palliative Care Library is a curated collection of literature on the broad subject of palliative care for children from 0-19 years of age and includes both perinatal and neonatal palliative care subjects. Rather than focus on a single syndrome, condition or symptom, the PPC Library is designed to collect and share hard to find research on the bio-psychosocial-spiritual symptoms of children with life-limiting conditions.
To make the library as useful as possible, the collection metadata is organized to allow for efficient and intuitive searching. Users can search the site by keyword or concept, journal title or author. Another way the library can be used is for browsing the collection. Clicking on an author’s name, for example, takes the user to a page that lists all the other citations by that author currently in our library.
The goal of the library is to support the practice of pediatric palliative care by making research from a wide range of sources easier to access and discover. We frequently find highly relevant literature in journals that do not have a palliative care or pediatric focus. This highlights the interdisciplinary nature of pediatric palliative care, as well as the challenge of keeping up to date on the latest research.
An ongoing challenge of the Pediatric Palliative Care Library is to balance our goal of creating a well-curated resource while ensuring the inclusion of a wide selection of research on a broad range of topics of relevance to pediatric palliative care practitioners. These can include patient care, symptom management, communication with family, and curriculum development for practitioners. The most frequently accessed citations in the Pediatric Palliative Care library reveal the diversity of high-quality research. They also underscore the challenge of keeping up to date with this research. Of the ten most popular citations in our library, two are published by The Journal of Pain and Symptom Management, while the remaining eight are each published in a different journal. One of the top ten articles is published in The Journal of Loss and Trauma.
To improve the quality and relevance of the articles in the library, we use Google Analytics to monitor bounce-rate and length of time visitors spend on each page, as well as the frequency of visits to each page. We also use Hootsuite analytics to measure click-throughs via Twitter.
The Pediatric Palliative Care library can be found at pedpalascnetlibrary.omeka.net
The 10 most frequently viewed citations in the Pediatric Palliative Care Library.
Van Scoy, L. J., Watson-Martin, E., Bohr, T. A., Levi, B. H., & Green, M. J. (2017). End-of-Life Conversation Game Increases Confidence for Having End-of-Life Conversations for Chaplains-in-Training. American Journal of Hospice and Palliative Care. https://pedpalascnetlibrary.omeka.net//items/show/10801
Hauer, J. (2017). Feeding Intolerance in Children with Severe Impairment of the Central Nervous System: Strategies for Treatment and Prevention. Children (Basel), 5(1). https://pedpalascnetlibrary.omeka.net//items/show/11261
Duncan C. Randall (2017) Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child, Comprehensive Child and Adolescent Nursing, 40:4, 257-267, https://pedpalascnetlibrary.omeka.net//items/show/15170
Lamba, S., Sudore, R., Buckholz, G. T., Radwany, S. M., & Wolfe, J. (2018). It Takes a Village: Building a Culture of Mentorship and Sponsorship to Thrive Throughout Our Careers (FR409). Journal of Pain and Symptom Management, 55(2), 598. https://pedpalascnetlibrary.omeka.net//items/show/15104
Kruse, K. E., Batten, J., Constantine, M. L., Kache, S., & Magnus, D. (2017). Challenges to code status discussions for pediatric patients. PLoS ONE, 12(11). https://pedpalascnetlibrary.omeka.net//items/show/11227
Haskamp, A., Scanlon, C., Hill, A., & Hatton, A. (2018). Story time with pediatric palliative care: A community self-care strategy. Journal of Pain and Symptom Management. https://pedpalascnetlibrary.omeka.net//items/show/15116
Weiss, E. M., & Fiester, A. (2018). From “Longshot” to “Fantasy”: Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail. American Journal of Bioethics, 18(1), 3–11. https://pedpalascnetlibrary.omeka.net//items/show/14586
Zaal-Schuller, I. H., Willems, D. L., Ewals, F., van Goudoever, J. B., & de Vos, M. A. (2017). Considering quality of life in end-of-life decisions for severely disabled children. Research in Developmental Disabilities, 73, 67–75. https://pedpalascnetlibrary.omeka.net//items/show/11272
Kavas, M. V. (2018). How to Increase the Quality of a Suffering Experience: Lessons Derived From the Diary Narratives of a Dying Adolescent Girl. Omega (Westport), 76(3), 256–295. https://pedpalascnetlibrary.omeka.net//items/show/11275
Crane, J. L., & Davis, C. S. (2018). Child’s Play: The Role of Play in Mitigating the Fear of Death Among Pediatric Palliative Care Team Patients, Families, and Caregivers. Journal of Loss & Trauma, 23, 4–4. https://pedpalascnetlibrary.omeka.net//items/show/15187