Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study

Jones, TA; Olds, TS; Currow, DC; Williams, MT

Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study

Jones, TA Olds, TS Currow, DC

Williams, MT

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Publication Type:: Journal Article
Citation:: Palliative Medicine, 2019, 33 (10), pp. 1319 - 1324
Issue Date:: 2019-12-01

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Field	Value	Language
dc.contributor.author	Jones, TA	en_US
dc.contributor.author	Olds, TS	en_US
dc.contributor.author	Currow, DC https://orcid.org/0000-0003-1988-1250	en_US
dc.contributor.author	Williams, MT	en_US
dc.date.issued	2019-12-01	en_US
dc.identifier.citation	Palliative Medicine, 2019, 33 (10), pp. 1319 - 1324	en_US
dc.identifier.issn	0269-2163	en_US
dc.identifier.uri	http://hdl.handle.net/10453/138897
dc.description.abstract	© The Author(s) 2019. Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life. Aim: To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life. Design: An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (⩾7 Numerical Rating Scale 0–10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months. Setting/participants: People living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics. Results: A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point. Conclusion: A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness.	en_US
dc.relation.ispartof	Palliative Medicine	en_US
dc.relation.isbasedon	10.1177/0269216319867214	en_US
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject.classification	Gerontology	en_US
dc.title	Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study	en_US
dc.type	Journal Article
utslib.citation.volume	10	en_US
utslib.citation.volume	33	en_US
utslib.for	1117 Public Health and Health Services	en_US
utslib.for	1199 Other Medical and Health Sciences	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
utslib.copyright.status	closed_access	*
pubs.issue	10	en_US
pubs.publication-status	Published	en_US
pubs.volume	33	en_US

Abstract:

© The Author(s) 2019. Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life. Aim: To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life. Design: An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (⩾7 Numerical Rating Scale 0–10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months. Setting/participants: People living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics. Results: A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point. Conclusion: A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness.

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http://hdl.handle.net/10453/138897