Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats

Autor:	Hillary D. Lum, Bethany M. Kwan, Megan A. Morris, Shirley Otis-Green, Grace Venechuk, Adam Hayden, Megan Griff, Liz Salmi, Maija Reblin
Rok vydání:	2020
Předmět:	Palliative care media_common.quotation_subject social media Medicine (miscellaneous) Stakeholder engagement 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Nursing medicine AcademicSubjects/MED00300 Social media 030212 general & internal medicine media_common palliative care business.industry stakeholder engagement Stakeholder Original Articles humanities quality of life 030220 oncology & carcinogenesis Anxiety brain tumors Grief AcademicSubjects/MED00310 medicine.symptom business Psychosocial
Zdroj:	Neuro-Oncology Practice
ISSN:	2054-2577
Popis:	Background Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. Methods The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. Results Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs. Conclusions In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.
Databáze:	OpenAIRE
Externí odkaz:	https://explore.openaire.eu/search/publication?articleId=doi_dedup___::4e0a8fff45d7aeaca95a57df19fc0154 https://pubmed.ncbi.nlm.nih.gov/33304602 Zobrazit plný text záznamu Plný text ve formátu PDF Plný text ve formátu HTML
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