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Adaptation of the Ambulatory and Home Care Record for collecting palliative care service utilisation data from family carers in the UK: a pilot study

Holdsworth, Laura M., Gage, Heather, Williams, Peter and Butler, Claire (2018) Adaptation of the Ambulatory and Home Care Record for collecting palliative care service utilisation data from family carers in the UK: a pilot study Pilot and Feasibility Studies, 4, 141. pp. 1-10.

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Abstract

Background

Measuring service use and costs is an important aspect of service delivery evaluation. In end-of-life care, there is heavy reliance on care by family/friends (informal carers) and this should be reflected in the total cost of care alongside formal services. The Ambulatory and Home Care Record, developed in Canada, is both comprehensive in coverage and validated for collecting data on formal and informal caring. This study aimed to adapt and pilot the Ambulatory and Home Care Record questionnaire for use in the UK within a study evaluating a new palliative care service. The objectives were to test if family carers could be recruited and assess acceptability and usability of data gathered.

Methods

Single cohort pilot study using a structured telephone questionnaire carried out every other week. Family carers of patients newly added to the palliative care register or referred to hospice services in the South East of England were invited to participate by mail. Volunteers remained in the study for a maximum of six interviews or until the patient died.

Results

In total, 194 carers were invited by mail to participate in the study, of which 23 (11.8%) completed at least one interview and 16 (8.2%) completed all possible interviews. Recruitment to the study was lower than anticipated, but most participants seemed to find the interviews acceptable. The modified questionnaire produced usable and relevant data for an economic evaluation of formal and informal caring costs.

Conclusions

Modifications are needed to the process of recruitment as a postal recruitment strategy did not have a high response rate. The Ambulatory and Home Care Record has proved a viable tool for use in the UK setting, with a few minor modifications, and will be used in a larger study comparing hospice models.

Item Type: Article
Divisions : Faculty of Health and Medical Sciences > School of Biosciences and Medicine
Authors :
NameEmailORCID
Holdsworth, Laura M.
Gage, HeatherH.Gage@surrey.ac.uk
Williams, PeterP.Williams@surrey.ac.uk
Butler, Claire
Date : 18 August 2018
DOI : 10.1186/s40814-018-0332-2
Copyright Disclaimer : © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Uncontrolled Keywords : Service utilisation; Palliative care; Questionnaire; Telephone interview; Pilot study; Informal care
Depositing User : Clive Harris
Date Deposited : 25 Mar 2019 08:29
Last Modified : 25 Mar 2019 08:29
URI: http://epubs.surrey.ac.uk/id/eprint/850850

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