The Carers' Alert Thermometer (CAT): supporting family carers of people living with motor neurone disease

Abstract

Background: Burden and distress among family carers of people living with motor neurone disease (MND) are reported widely. Evidence-based screening tools to help identify these carers' needs and plan appropriate support are urgently needed. Aim: To pilot the Carers' Alert Thermometer (CAT), a triage tool developed to identify carers' needs, with family carers of people living with MND to determine its usefulness in identifying their need for support. Methods: Training workshops with MND Association visitors (AVs) and staff in southwest and northwest England, followed by implementation of the CAT. A self-completed online survey and semi-structured telephone interview evaluated use of the CAT. Findings: Sixteen participants completed the online survey with 11 volunteering to be interviewed. The CAT has potential to map change over time, help to focus on carers' needs and improve communication with carers. Conclusion: The CAT provides a structure enabling AVs to engage in a meaningful process with family carers to identify and discuss their needs.

“Walking a tightrope”: A grounded theory approach to informal caregiving for amyotrophic lateral sclerosis

“…This is complementing current policy and practice which is deficit oriented. For example, the Carers’ Alert Thermometer (O’Brien et al., 2019) assesses the current situation and needs of informal caregivers, however, as outlined by our theoretical understanding it could be added with a prospective perspective. Whilst the progression of disease and of the caregiving course are uncertain, several foreseeable situations are leading to shift the balance against or in favour of the caregiver.…”

Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study

“…The Carers' Alert Thermometer (CAT) has been used with family carers of people with MND. 18 The CAT was designed originally as an alert tool in a more general care context and to date it has not undergone testing as a practice intervention in any trial. For MND, its instructions were modified to enable use by Motor Neurone Disease Association (MNDA) volunteers instead of healthcare staff: there was no involvement of carers themselves to review suitability or relevance of the CAT questions prior to its use with MND carers.…”

Family caregivers’ experiences in the palliative care context: A longitudinal, qualitative study

“…A number of evidence based tools have been developed with the aim of providing a framework to identify the direct and indirect needs and difficulties of caregivers over the course of the patients illness trajectory (Ewing, Brundle, Payne, andGrande, 2013, Aoun, Deas, Kristjanson, andKissane, 2017;O'Brien, Jack, Kinloch, Clabburn and Knighting, 2019). Two of the tools are limited in terms of their applicability because both are designed to explore the needs of individuals caring for patients with one specific illness.…”

“…Two of the tools are limited in terms of their applicability because both are designed to explore the needs of individuals caring for patients with one specific illness. (Aoun et al, 2017;O'Brien et al, 2019). Within the tools also, there is a tendency to treat caregivers as a homogeneous group.…”

“…There is a growing recognition that support for the caregivers of patients with terminal illness should be driven by the caregivers' own perceptions of need during the course of the patient's illness (Guberman et al, 2007). Assessing the needs of patients should take into account the individual psychosocial factors which impact on their caregivers' ability to provide care for them over the course of their illness (Guberman et al, 2007;Grande and Ewing, 2019;O'Brien et al, 2019) The This process of adapting meant they were responsible for managing situations both inside and outside of the illness scenario. Examples of these situations were their changing economic or employment status, their individual health needs and the way they negotiated their own personal and professional support 234 networks.…”