Using the Carers’ Alert Thermometer tool to identify needs and support family caregivers of people with Motor Neurone Disease: Moving beyond needs assessments

Samar M. Aoun*, Mary R. O’Brien, Katherine Knighting

*Corresponding author for this work

Research output: Contribution to journalArticle (journal)peer-review

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Abstract

Background
Family caregivers of people with Motor Neurone Disease (MND)
experience adverse health outcomes as a result of their caregiving
experience. This may be alleviated if their support needs are identified
and addressed in a systematic and timely manner.
The objective of this pilot study was to assess the feasibility and
relevance of the Carers’ Alert Thermometer (CAT) in home-based care,
from the perspective of MND family caregivers. The tool provides a
formal structure to facilitate discussions with caregivers to enable needs
to be addressed.
Methods
This mixed-method study was conducted in Western Australia (2020-21).
Forty-one caregivers and five MND Advisors participated in trialling the
CAT intervention which consisted of two encounters with Advisors (6-8
weeks apart) to identify and address support needs through action plans.
Caregivers’ feedback was obtained via telephone interviews and a
thematic analysis was undertaken.
Results
Thirty caregivers completed two CAT assessments. Caregivers identified
support priorities of managing their feelings and worries, providing
emotional or spiritual care, information about the person’s condition and
how their care needs might change. Seventeen caregivers were
interviewed and found that this assessment process adequately
addressed their needs and it should be continued, it brought the focus
onto them to clarify problems and work through solutions. The
improvements that were suggested by them, including better
information/education in palliative care, led to the development of an
online support/information toolkit, which served to empower caregivers
and staff by accessing relevant information and resources.
Original languageEnglish
JournalPalliative Care and Social Practice
Volume18
Early online date11 Feb 2024
DOIs
Publication statusE-pub ahead of print - 11 Feb 2024

Keywords

  • Motor Neurone Disease
  • Palliative care
  • Carers
  • Carers Alert Thermometer
  • compassionate communities

Research Institutes

  • Health Research Institute

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