The feasibility of a brain tumour website

Piil, Karin; Jakobsen, Johannes; Juhler, Marianne; Jarden, Mary

doi:10.1016/j.ejon.2015.05.001

Cited by 14 publications

(45 citation statements)

References 48 publications

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“…They appear more concerned with the ultimately progressive course of the disease, and cognitive problems that may cause them to need help using this system. Similar difficulties have been found in other eHealth initiatives for glioma patients [ 31 ]. Because of these specific difficulties, implementing a monitoring system may be less suitable in this patient population.…”

Section: Discussionsupporting

confidence: 79%

Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers

Boele

Uden–Kraan

Hilverda

et al. 2016

Support Care Cancer

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PurposeGlioma patients and their informal caregivers face many challenges in living with the disease and its disease-specific consequences. To better meet their needs, a system to monitor symptoms, distress, and quality of life could prove useful. We explored glioma patients’ and caregivers’ attitudes and preferences toward monitoring in general and specifically toward paper-and-pencil and computerized (eHealth) options.MethodsIn total, 15 patients and 15 informal caregivers participated in individual, semi-structured interviews. Interviews were transcribed smooth verbatim and coded by two researchers independently.ResultsAdvantages of monitoring generated by participants include increased awareness of problems and their flow over time, and facilitating supportive care provision. Disadvantages include investment of time and mastering the discipline to monitor frequently. Patients reported more disadvantages of monitoring, including practical and disease-specific impediments, while caregivers mentioned more advantages. Preferences for specific methods mentioned to monitor are highly personal but most prefer to have an option for face-to-face contact to discuss results of monitoring with health care professionals even in computerized instruments.ConclusionsInformal caregivers view a monitoring system more favorably than glioma patients. In developing an efficient monitoring system to help glioma patients and caregivers find their way to supportive care, a computerized instrument with the added opportunity to contact a health care professional seems to be the best option to advise.Electronic supplementary materialThe online version of this article (doi:10.1007/s00520-016-3112-7) contains supplementary material, which is available to authorized users.

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Section: Discussionsupporting

confidence: 79%

Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers

Boele

Uden–Kraan

Hilverda

et al. 2016

Support Care Cancer

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“…The preference for a blended care option corroborated findings from studies among cancer patients in general [21] and neuro-oncology patient/caregiver populations in particular [22]. Cancer survivors (N = 212) viewed eHealth applications favorably, with 48% indicating that they would find the option to self-monitor their side-effects and symptoms attractive [21].…”

Section: Discussionsupporting

confidence: 63%

“…Cancer survivors (N = 212) viewed eHealth applications favorably, with 48% indicating that they would find the option to self-monitor their side-effects and symptoms attractive [21]. A feasibility study testing a Danish brain tumor website among brain tumor patients and caregivers furthermore showed that especially caregivers appreciated the option to contact health care professionals online [22]. However, our report focuses on caregivers' preferences for keeping track of their own care issues over time-which is, indeed, a relatively unexplored area [23,24].…”

Section: Discussionmentioning

confidence: 99%

Neuro-oncology family caregivers’ view on keeping track of care issues using eHealth systems: it’s a question of time

et al. 2018

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support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-touse 'blended care' instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country-or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

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“…There are several tele-health formats (e.g., telephone, Skype, video-conferencing, Internet-based resources); hence, there is a need to take into account people's sensory-perceptual, motor, language and cognitive functioning as well as their familiarity with technology, particularly for computer-mediated support. Pilot research into the feasibility of an interactive brain tumour-specific website by Piil, Joakobsen, Juhler and Jarden (2015) found that the website had relatively low levels of use by people with brain tumour. Interviews identified a major theme of ‘challenges and barriers’ whereby people who were newly diagnosed often felt too overwhelmed by the change in their life situation to use the online resource.…”

Section: Pilot Intervention Research and Future Directionsmentioning

confidence: 99%

Coping with the Unthinkable: Psychosocial Advances in the Management of Primary Brain Tumour

Ownsworth

2016

Brain Impairment

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Brain cancer is a complex and distressing illness with a typically poor prospect for survival. Worldwide, approximately 256,000 people (1800 in Australia) are diagnosed each year (Ferlay, Soerjomataram & Ervik, 2013). Cancer of the brain poses a double threat – to one's survival and sense of self. Most people with primary brain tumour develop serious neuro-cognitive symptoms (e.g., seizures, memory loss) and experience poor mental health and quality of life, which places enormous burden on family care givers. Not surprisingly, high rates of psychological distress have been reported by people with brain tumour and their family care givers. Psychological distress can persist beyond primary treatment, and often increases in the long-term phase of illness due to the perceived threat and experience of recurrence and functional decline. Over the last decade, there have been many advances in the psychosocial management of people with brain tumour. This paper provides an overview of the functional, psychological and social consequences of brain tumour, summarises some leading developments in psychological assessment and management, and outlines future directions in intervention research.

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The feasibility of a brain tumour website

Abstract: ISRCTN22038059.

Cited by 14 publications

References 48 publications

Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers

Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers

Neuro-oncology family caregivers’ view on keeping track of care issues using eHealth systems: it’s a question of time

Coping with the Unthinkable: Psychosocial Advances in the Management of Primary Brain Tumour

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