Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers.
Purpose: Glioma 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' attit...
| Publicado en: | Supportive Care in Cancer Vol. 24; no. 7; pp. 3011 - 3023 |
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| Autores principales: | , , , , , , , , , , |
| Formato: | Journal Article |
| Publicado: |
Springer Nature
Jul2016
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=115560540&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 115560540 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09414355 O1J jtl: Supportive Care in Cancer issn: 09414355 maglogo: N pubinfo: dt: Jul2016 vid: 24 iid: 7 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 115560540 115560540 NLM26879825 10.1007/s00520-016-3112-7 NLM26879825 PMC4877415 115560540 ppf: 3011 ppct: 12 formats: fmt: @attributes: type: P tig: atl: Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers. aug: au: Boele, Florien Uden-Kraan, Cornelia Hilverda, Karen Reijneveld, Jaap Cleijne, Wilmy Klein, Martin Verdonck-de Leeuw, Irma Boele, Florien W van Uden-Kraan, Cornelia F Reijneveld, Jaap C Verdonck-de Leeuw, Irma M affil: Department of Medical Psychology, VU University Medical Center, Amsterdam Netherlands sug: subj: Brain Neoplasms Psychosocial Factors Glioma Psychosocial Factors Caregivers Psychosocial Factors Quality of Life Psychosocial Factors Middle Age Aged Adult Male Attitude Female Ferrans and Powers Quality of Life Index Personal Resource Questionnaire Questionnaires Middle Aged: 45-64 years Aged: 65+ years Adult: 19-44 years Male Female ab: Purpose: Glioma 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.Methods: In total, 15 patients and 15 informal caregivers participated in individual, semi-structured interviews. Interviews were transcribed smooth verbatim and coded by two researchers independently.Results: Advantages 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.Conclusions: Informal 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. pubtype: Academic Journal doctype: Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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