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Change: Little Eyolf, Henrik Ibsen (1894)
Published in Ewan Jeffrey, David Jeffrey, Enhancing Compassion in End-of-Life Care Through Drama, 2021
– ‘In our little Eyolf’s place’ – but then reflects how little they have done for the poor people in the past. Rita and Albert conclude that if they can do something to help these children, ‘Eyolf was not born in vain’ and, as Rita says, ‘nor taken from us in vain’. Bereaved parents may find that one way of coping with their loss is to invest time and energy in helping others; often involving themselves in charities associated with the condition their child died from or helping a local children’s hospice.
The Power of Patient Advocacy in Pediatric Neuro-Oncology
Published in David A. Walker, Giorgio Perilongo, Roger E. Taylor, Ian F. Pollack, Brain and Spinal Tumors of Childhood, 2020
Kathy Oliver, Susan Awrey, Mark Brougham, Gloria Garcia Castellvi, Anita Granero, Rakesh Jalali, Sacha Langton-Gilks, Yuko Moue, Kathy Riley, Bonita Suckling, Hisato Tagawa, Mohammed Raees Tonse
The Yokohama Children’s Hospice project is a compelling illustration of the power of patient advocacy and how it can positively impact on the pediatric brain tumor community. Mr. Tagawa and his advocacy colleagues know, however, that their advocacy work doesn’t stop when the new hospice facility opens its doors to the first patients in 2021. Challenges lie ahead in providing optimal end-of-life care for pediatric patients in the dedicated children’s hospice setting. There is, for example, a shortage of doctors and nurses specializing in pediatric terminal care so developing more human resources for this crucial role is vital. Issues like these will keep brain tumor patient advocates in Japan, like Hisato Tagawa, very busy for the foreseeable future.
Designing for palliative care
Published in Stephen Verderber, Ben J. Refuerzo, Innovations in Hospice Architecture, 2019
Stephen Verderber, Ben J. Refuerzo
A vital part of a hospice is a resource library. This room can function as the media center, with computers with Internet access, and a place for the storage of books and magazines. The reading room may be used for social functions from time to time. It should be in a prominent place in the hospice, but not at the center. Create small built-in reading alcoves with a combination of built- in seating, such as at the North London Hospice, and a table for laying out larger materials. Do not locate this room next to the activity room for children and adolescents. The resource library can overlook a quiet garden, and a door may afford access to the outdoors. Primarily it is a semi-private place where one can spend time reading, studying, and relaxing. In larger hospices, and in children’s hospice, a portion, or an entirely separate room, can be devoted to young children.
Speech–language pathology in paediatric palliative care: A scoping review of role and practice
Published in International Journal of Speech-Language Pathology, 2018
Lillian Krikheli, Bernice A. Mathisen, Lindsay B. Carey
The authors noted that at the time of writing, there have been no endorsed preventative measures for the above-listed symptoms in a palliative care setting. Friedrichsdorf et al. recommended a twice-daily routine of gentle brushing and pharmacologic intervention for candidiasis, ulcerations and periodontitis. Similarly, Miller and Willging (2012) recommended that as part of the strategies they provide for SLPs managing feeding, daily oral care (including teeth, gums and tongue) is essential in minimising the risk of infection. The Rainbow Children’s Hospice (UK) guidelines written by Jassal (2013) addressed general symptoms, causes and suggested treatments of oral problems experienced by children receiving palliative care.
Still Lost in Transition?
Published in Comprehensive Child and Adolescent Nursing, 2018
Nicholas Medforth, Elaine Huntingdon
As a teenager, Holly regularly attended a children’s hospice and became a young ambassador. Holly’s age means that she is now no longer able to attend and this contributes to her sense of social isolation. The commitment to family-centered care at the children’s hospice is not replicated at the local adult hospice and because Holly is still young, her parents feel that transition there would be inappropriate. There are consequences for Holly’s younger brother too. He is very distressed at having to leave behind friends he made at the siblings club run by the children’s hospice.