Dataset Information

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

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.

SUBMITTER: Holdsworth LM

PROVIDER: S-EPMC6098633 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Publications

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 LM Gage Heather H Williams Peter P Butler Claire C

Pilot and feasibility studies 20180818

<h4>Background</h4>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 R ...[more]

PMID: 30140443

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Project description:BackgroundAfter-hours support from hospice providers is instrumental to patients with serious illness who choose to remain at home, particularly at end of life. Utilisation of out-of-hours support has been much characterised in terms of frequency and nature of calls, but more needs to be known to inform service customisation and resource allocation to optimise care. To this end, we stratify reasons for using the after-hours helpline according to time sensitivity, and to explore disease and person factors associated with urgent calls.MethodElectronic medical records for incoming calls from external parties outside workhours within a large home hospice in Singapore were analysed inductively, to identify patterns and associations along study objectives. Individual code books for caller type and call reasons were created and tested in vivo, and later administered to extracted data. Patients that accessed the helpline were tracked for different outcomes, including hospital admissions and on-call home visits. Logistic regression modelling was performed to categorise call reasons by urgency and to identify disease and person factors associated with time sensitive calls.ResultsMore than 5,000 calls to the helpline were made over a two-year period (2019-2020), predominantly by family caregivers (88.4%). These were in relation to 2,303 unique patients (38.9% of total patients served). After-hours calls were made an average of 2.3 times by patients across various lengths of service. Only 11.9% of calls were deemed time sensitive or urgent, requiring home visits by on-call staff (4%) or resulting in admission to hospital (7.9%). The majority were managed by primary care teams on the next workday (65.1%) and the remainder sorted during the after-hours call itself (22.3%). Call reasons or presenting issues were classified into two groups according to urgency. Calls in the year 2020, from the younger patient, preferred place of death outside the home, and caller types other than patient or healthcare worker were significantly associated with urgent calls.ConclusionDeeper characterisation of after-hours calls offers possibilities: service redesign for optimal resourcing and customised training for better care. Ultimately, planners, providers, and patients all stand to benefit.

Project description:ObjectivesTo investigate the experiential impact of the COVID-19 pandemic on patients with non-COVID, life-threatening disease and their family carers.DesignAn interpretative qualitative design informed by phenomenological hermeneutics and based on data from in-depth interviews, performed between June and September 2020.SettingPatients receiving specialised palliative home care and their family carers living in Sweden.Participants22 patients (male/female 11/11) and 17 carers (male/female 5/12) aged 50 years and older. All the patients received specialised palliative home care and most were diagnosed with cancer.Inclusion criteriaaged 18 years or older, diagnosed with an incurable life-threatening, non-COVID disease, sufficient strength to participate and capacity to provide informed consent. Participants were selected through a combination of convenient and consecutive sampling.ResultsThe significance of the pandemic for both patients and carers showed a continuum from being minimally affected in comparison to the severe underlying disease to living in isolation with constant fear of becoming infected and falling ill with COVID-19, which some likened to torture.The imposed restrictions on social contact due to the pandemic were particularly palpable for this group of people with a non-COVID-19, life-limiting condition, as it was said to steal valuable moments of time that had already been measured.Most patients and carers found access to specialised palliative home care was maintained despite the pandemic. This care was of paramount importance for their sense of security and was often their sole visiting social contact.ConclusionsIn the pandemic situation, highly accessible support from healthcare and social care at home is particularly important to create security for both patients and carers. Thus, to provide appropriate support, it is important for healthcare and social care personnel to be aware of the great diversity of reactions patients in palliative care and their carers may have to a pandemic threat.

Dataset Information

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

Background

Methods

Results

Conclusions

Publications

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

Similar Datasets

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