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


OBJECTIVE
The aim of this study was to elucidate the experiences and needs for rehabilitation and supportive care in patients with HGG and their caregivers.


METHODS
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.


RESULTS
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.


CONCLUSIONS
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, this hope needs to be supported by healthcare professionals. Driven by hope, they seek to optimize the therapeutic effect of the oncological treatments by being engaged together in health promoting activities. As symptoms progressed, the need for information and guidance regarding symptoms and supportive care interventions became evident. Caregivers play a significant supporting role for the patients and need special support themselves and practical assistance especially when symptoms progress. Finally, there is a need for rehabilitation programs that target the cognitive ability of the patients to participate actively.
Questions or comments about this article may be directed to Karin Piil, RN MHScN, at Karin.piil@regionh.dk. She is a PhD Student at University Hospital of Copenhagen, Rigshospitalet, Denmark. Marianne Juhler, MD, is a Professor, Department of Neurosurgery, The University Hospital of Copenhagen, and Section of Neurology, Psychiatry and Sensory Sciences, Department of Clinical Medicine, The University of Copenhagen, Denmark. Johannes Jakobsen, MD, is a Professor and Head, Neuroscience Center, The University Hospital of Copenhagen, Denmark. Mary Jarden, RN MScN PhD, is an Associate Professor, The University Hospitals Center for Health Research (UCSF) and Center for Integrated Rehabilitation of Cancer Patients (CIRE), Copenhagen, Denmark.
Karin
K
Piil
Marianne
M
Juhler
Johannes
J
Jakobsen
Mary
M
Jarden
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001932:Brain Neoplasms / Q000451:nursing* / Q000523:psychology* / Q000534:rehabilitation; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D005910:Glioma / Q000451:nursing* / Q000523:psychology / Q000534:rehabilitation; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D007406:Interview, Psychological; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D060787:Neoplasm Grading; D011788:Quality of Life / Q000523:psychology*; D012944:Social Support