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

2019 ◽  
Vol 15 (3) ◽  
pp. 114-124
Author(s):  
Mary R O'Brien ◽  
Barbara A Jack ◽  
Karen Kinloch ◽  
Oliver Clabburn ◽  
Katherine Knighting
Keyword(s):  
Online Survey ◽  
Telephone Interview ◽  
Motor Neurone ◽  
Screening Tools ◽  
Motor Neurone Disease ◽  
Evidence Based ◽  
Family Carers ◽  
Change Over Time ◽  
Need For Support ◽  
Over Time

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.

scholarly journals 409 - Trends in Involvement, Perceived Role, Role Overload and Self-efficacy of Family Carers of People with Dementia in Care Homes

2020 ◽  
Vol 32 (S1) ◽  
pp. 125-125
Author(s):  
Marleen Prins ◽  
Bernadette Willemse ◽  
Marlous Tuithof ◽  
Henriëtte van der Roest ◽  
Anne Margriet Pot
Keyword(s):  
Self Efficacy ◽  
Care Home ◽  
Care Homes ◽  
Role Overload ◽  
Family Carers ◽  
Change Over Time ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care ◽  
Over Time

IntroductionThe quality of long-term care provided to people with dementia (PwD) in care homes can be improved by implementing person-centered care. Family carers of PwD living in care homes are an important part of person-centered care. However, they often experience high levels of burden, even when a family member with dementia lives in a care home. This study examines trends in the involvement of family carers and their perceived role, role overload and self-efficacy.MethodsData from the Living Arrangements for People with Dementia study, a cross-sectional monitoring study that evaluates developments in care for PwD in care homes in the Netherlands, with four measurement cycles between 2008-2017 was used. Data from the three most current measurement cycles were used, with respectively 144, 47 and 49 participating care homes and 888, 392 and 401 participating family carers. Family involvement was measured by the number of hours per week that family carers visited the PwD and the type of activities they undertook. Perceived caregiving role was measured with the Family Perceptions of Caregiving Role instrument. We used the Self-Perceived Pressure by Informal Care to measure role overload and a 37-item questionnaire was used to measure self-efficacy. We investigated the changes over time (e.g., measurement cycles) of these measures.ResultsThe number of hours that family carers visited the PwD did not change over time. However, there was a trend towards an increase in the variety of activities they undertook. Their perceived caregiving role did not change over time. Self-efficacy of family carers increased over time and they reported more feelings of role overload.ConclusionsDuring the past decade, there has been an increasing trend towards family carers doing more diverse activities with PwD in carer homes. Family carers did feel more competent in their caring role, although their feelings of role overload also increased. Continuing attention is therefore needed for the psychological well-being of family carers after a person with dementia moves to a care home.

Unspoken, yet understood: Exploring how couples communicate their exclusivity agreements

2021 ◽  
pp. e20210011
Author(s):  
Megan D. Muise ◽  
Charlene F. Belu ◽  
Lucia F. O’Sullivan
Keyword(s):  
Content Analysis ◽  
Romantic Relationships ◽  
North American ◽  
Online Survey ◽  
Change Over Time ◽  
Direct Communication ◽  
Survey Questions ◽  
Implied Meaning ◽  
The Relationship ◽  
Over Time

Although monogamy (i.e., romantic and/or sexual exclusivity) remains the most common arrangement for romantic partnerships, there is little research exploring how couples communicate about exclusivity to one another. The current study assessed the ways in which couples discuss and negotiate exclusivity agreements, and whether those agreements change over time. Participants were 573 North American adults (mean age = 28.86 years; 52% identified as female) in romantic relationships who completed an online survey asking them to describe their current exclusivity agreements using both structured and open-ended survey questions. Open-ended data were subjected to inductive content analysis, and eight primary themes were identified. Although most (91%) indicated that they have an agreement to remain romantically and sexually exclusive in their relationships, only 43% reported coming to the agreement during an explicit conversation with their partner. More often (52%) the agreements were described as implied, meaning they had never actually been discussed. Of those with exclusivity agreements, 87% reported no change to their agreement throughout the relationship. Implications are discussed in terms of the value of direct communication between partners about exclusivity and infidelity.

scholarly journals Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey

2017 ◽  
Vol 372 ◽  
pp. 144-151 ◽  
Author(s):  
Samar M Aoun ◽  
Lauren J Breen ◽  
David Oliver ◽  
Robert D Henderson ◽  
Robert Edis ◽  
...  
Keyword(s):  
National Survey ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Family Carers

Evidence Based on a dynamic source: Database support for a theory of transitive reciprocals

2015 ◽  
Vol 1 (1) ◽  
Author(s):  
Ken Safir
Keyword(s):  
Natural Language ◽  
Empirical Support ◽  
Direct Object ◽  
Evidence Based ◽  
Change Over Time ◽  
Search Results ◽  
Source Database ◽  
Linguistic Research ◽  
Dynamic Source ◽  
Over Time

AbstractThe novelty of this document is that the empirical support for the predictions it examines, predictions about the distribution and interpretation of transitive reciprocal constructions, will be different each time it is read. The evidence will change because this paper will only provide parameters for a search of the Afranaph Database (ongoing) and two other databases, and as these databases grow and change over time, the search results returned today will be different from the results returned by the same search executed months or years from now. Reversing the normal priorities of linguistic research, the proposal we present about the nature of reciprocal constructions in natural language, which contends that direct object full DPs anaphors do not directly contribute reciprocal meaning (a proposal more broadly and specifically defended by

14 Enabling tailored and coordinated support for family carers of people with motor neurone disease through adaptation of a carer support needs assessment tool (CSNAT) intervention

2018 ◽  
Vol 8 (3) ◽  
pp. 365.1-365 ◽  
Author(s):  
Gail Ewing ◽  
Sarah Croke ◽  
Christine Rowland ◽  
Gunn Grande
Keyword(s):  
Needs Assessment ◽  
Assessment Tool ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Support Needs ◽  
List Type ◽  
Family Carers ◽  
Carer Support ◽  
Main Support ◽  
Stage 1

IntroductionFamily carers provide vital support for people with Motor Neurone Disease (MND) but caregiving can be very physically and mentally demanding. It is therefore crucial to ensure healthcare practitioners (HCPs) can provide timely support to carers fitting their individual needs. Currently there are no UK interventions for this.AimTo adapt an existing carer support needs assessment tool (CSNAT) intervention to support the needs and situation of family carers of people with MND.MethodsStages:Focus groups and interviews with 33 carers (14 bereaved 19 current carers) to capture support needs key points of change during patient’s illness and main support services.Workshops with HCPs (N=17 recruited to date) and carer advisors (N=19) to inform materials and procedures for MND carer assessment and support.ResultsStage 1: Carers’ experience was one of dealing with a devastating diagnosis a constantly changing situation with heavy dependence on them as carers and with little consideration of their separate support needs. Carers’ support needs mainly mapped onto CSNAT domains but MND carers may experience relationship issues warranting further consideration. Stage 2 will integrate HCP and carers’ views on when where how and by whom MND carer assessment and support should best be provided.ConclusionsFindings to be presented from Stages 1 and 2 will provide insights into how MND carers want to be assessed and supported. This will form the basis for an intervention to be tested in a future Stage 3 feasibility study.FunderMarie Curie Research Fund/Motor Neurone Disease Association

Experiences of dying, death and bereavement in motor neurone disease: A qualitative study

2011 ◽  
Vol 26 (4) ◽  
pp. 368-378 ◽  
Author(s):  
Bridget Whitehead ◽  
Mary R O’Brien ◽  
Barbara A Jack ◽  
Douglas Mitchell
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Health Professionals ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Care Planning ◽  
Family Carers ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care

Objectives: to explore the experiences of people with Motor Neurone Disease (MND), current and bereaved carers in the final stages of the disease and bereavement period. Methods: a qualitative study using narrative interviews was used to elicit accounts from 24 people with MND and 18 current family carers and 10 former family carers. Results: the needs of patients and carers are not being adequately met in the final stages of MND and there appears a need for increased, co-ordinated support from palliative care services. The use of advance care planning tools is regarded as beneficial for patients and carers, but health professionals demonstrate a limited understanding of them. Anxiety and distress in patients, carers and bereaved carers is heightened during this period. Carer burden is excessive and may exacerbate patient distress and desire for hastening death. Conclusion: this study has identified a number of issues people with MND and their carers face in the final stages of the illness, indicating some ways in which health, social and palliative care services could be improved or co-operate more effectively in order to better meet their needs.

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