Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers: A Longitudinal Exploration of Rehabilitation and Supportive Care Needs

The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses
Karin PiilMary Jarden

Abstract

There is a lack of knowledge regarding the breadth of needs for rehabilitation and supportive care across the disease and treatment trajectory for patients with a high-grade glioma (HGG) and their caregivers. The aim of this study was to elucidate the experiences and needs for rehabilitation and supportive care in patients with HGG and their caregivers. Patients with malignant glioma (N = 30) and their caregivers (N = 33) were interviewed five times during the first year of the HGG trajectory. A thematic analysis of interviews at five time points revealed five main themes describing the experiences related to the illness trajectory and needs for rehabilitation and supportive care. The five main themes identified were (a) individual strategy for acquiring prognostic information, (b) shared hope, (c) engagement in health promotion activities, (d) adjustment to symptom limitations, and (e) role transition from family member to caregiver. The individual and sometimes opposing preferences among patients and their caregivers for prognostic information is a chosen strategy that supports individual needs in managing the HGG trajectory. Patients and caregivers experience a feeling of solidarity, from which shared hope arises; however, t...Continue Reading

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Citations

Apr 20, 2017·Disability and Rehabilitation·Lee CubisSuzanne Chambers
Feb 6, 2018·The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses·Karin Piil, Mary Jarden
Aug 16, 2017·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·G K B HalkettA K Nowak
Jan 25, 2018·BMJ Supportive & Palliative Care·Karin PiilMary Jarden
Nov 14, 2019·Current Treatment Options in Oncology·Heather E Leeper
Jul 6, 2020·Acta neurochirurgica·Morten WibroeKarin Piil
Oct 23, 2018·European Journal of Cancer Care·Karin PiilKathrine Hoffmann Pii
Jul 20, 2019·Nursing Ethics·Sara R FrancisCharlotte Delmar
May 5, 2018·The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses·Marilyn E ReedSherry W Fox
May 21, 2017·Journal of Neuro-oncology·Mirjam RenovanzAnne-Katrin Hickmann
Dec 12, 2020·Neuro-oncology Practice·Helle Sorensen von EssenFrantz Rom Poulsen
Feb 6, 2021·Neuro-oncology Advances·Amir H Zamanipoor NajafabadiUNKNOWN Dutch Meningioma Consortium
Feb 20, 2021·The Journal of Neuroscience Nursing : Journal of the American Association of Neuroscience Nurses·Altun BaksiHasan Genç

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