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

ABSTRACT: Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients' best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers' satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal 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-to-use '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.

SUBMITTER: Boele FW

PROVIDER: S-EPMC5543187 | biostudies-other | 2017 Aug

REPOSITORIES: biostudies-other

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Project description:ObjectiveeHealth-mediated interventions have been proposed as one option to support self-management in those with musculoskeletal disorders (MSDs). This scoping review aimed to chart the evidence regarding eHealth modalities, musculoskeletal diagnosis, and outcomes of eHealth-mediated self-management support interventions in persons with MSDs and identify any gaps within the literature.MethodsSix electronic databases (MEDLINE, CINAHL, PsycINFO, Embase, Scopus, and the Cochrane Database of Systematic Reviews), 7 grey literature sources (eg, OpenGrey), and reference and citation lists of included studies were searched from database inception to July 2020. Published studies of adult participants with a MSD utilizing an eHealth intervention to support self-management were included. Studies were limited to those published in English. Two reviewers independently screened all studies. Data were extracted by 1 reviewer and reviewed by another reviewer.ResultsAfter screening 3377 titles and abstracts followed by 176 full texts, 87 studies fulfilled the eligibility criteria. The majority were published in the last 5 years (n = 48; 55%), with almost one-third originating in the United States (n = 28; 32%). The most common eHealth modality type was internet based (n = 22; 35%), with almost one-half (n = 41; 47%) of the included studies involving participants with widespread musculoskeletal symptoms. The most commonly reported outcomes were related to body functions (ie, pain intensity) (n = 67; 45%), closely followed by activities and participation (ie, function) (n = 65; 44%), with environmental factors (ie, health care utilization) the least commonly reported (n = 17; 20%).ConclusionsThere is considerable variation within the eHealth-mediated self-management support intervention literature. Research is needed on the role of eHealth-mediated self-management support interventions across a broad range of MSDs to guide clinical practice.ImpactThis scoping review has identified gaps in the literature relating to specific eHealth modalities, musculoskeletal diagnoses, and health care utilization data, which should guide future research.

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

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