scholarly journals Views of Key Family Caregivers on Location of Care and Final Life Events During the End-of-Life Period for Homecare Patients

2018 ◽  
Vol 66 (5) ◽  
pp. 589-594
Author(s):  
Hiroko ARISUE ◽  
Kiyoka SATONAKA ◽  
Naho KOJIMA ◽  
Akemi NODA ◽  
Yumi MATSUSHIMA
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Life Events ◽  
Life Period

scholarly journals Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Family Caregiver ◽  
Screening Tools ◽  
Anxiety And Depression ◽  
The Family ◽  
End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

“Managing uncertainty”: Experiences of family members of burn patients from injury occurrence to the end-of-life period

Burns ◽  
2021 ◽  
Author(s):  
Jonathan Bayuo ◽  
Katherine Bristowe ◽  
Richard Harding ◽  
Anita Eseenam Agbeko ◽  
Prince Kyei Baffour ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Members ◽  
Burn Patients ◽  
Life Period ◽  
Injury Occurrence

scholarly journals Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Femmy M. Bijnsdorp ◽  
Bregje D. Onwuteaka-Philipsen ◽  
Cécile R.L. Boot ◽  
Allard J. van der Beek ◽  
Hanna T. Klop ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Family Care ◽  
Work And Family ◽  
Similar Process ◽  
Paid Work ◽  
Health And Wellbeing ◽  
Care Situation ◽  
At Home

Abstract Background Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

scholarly journals Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Third Sector ◽  
Life Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

scholarly journals Stability of end-of-life preferences in relation to health status and life-events: A cohort study with a 6-year follow-up among holders of an advance directive

PLoS ONE ◽  
2018 ◽  
Vol 13 (12) ◽  
pp. e0209315 ◽  
Author(s):  
Matthijs P. S. van Wijmen ◽  
H. Roeline W. Pasman ◽  
Jos W. R. Twisk ◽  
Guy A. M. Widdershoven ◽  
Bregje D. Onwuteaka-Philipsen
Keyword(s):  
Cohort Study ◽  
Health Status ◽  
End Of Life ◽  
Life Events ◽  
Advance Directive
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