Volunteers, Family Caregivers and Co-production in End of Life Care - A Big Ask? Exploring Potential Hurdles Using Action Research in the Development of Cottage Hospice

2019 ◽  
Author(s):  
Sean Hughes
Keyword(s):  
Action Research ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Life Care

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.

Relational Experiences of Family Caregivers Providing Home-Based End-of-Life Care

2012 ◽  
Vol 18 (4) ◽  
pp. 491-516 ◽  
Author(s):  
Catherine Ward-Griffin ◽  
Carol L. McWilliam ◽  
Abram Oudshoorn
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Life Care ◽  
Relational Experiences ◽  
Home Based

scholarly journals B10-C Why Not Ask the Experts? Family Caregivers' Experiences of Providing Palliative and End-of-Life Care

2016 ◽  
Vol 52 (6) ◽  
pp. e20-e21
Author(s):  
Lisa Williams ◽  
Tess-Moeke Maxwell ◽  
Stella Black ◽  
Gabriella Trussardi ◽  
Janine Wiles ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Life Care

scholarly journals COMMUNICATION AS CARE AT END OF LIFE: AN EMERGING ISSUE FROM AN EXPLORATORY ACTION RESEARCH STUDY OF RENAL END-OF-LIFE CARE FOR ETHNIC MINORITIES IN THE UK

2014 ◽  
Vol 40 (S1) ◽  
pp. 23-29 ◽  
Author(s):  
Emma Wilkinson ◽  
Gurch Randhawa ◽  
Edwina A. Brown ◽  
Maria Da Silva Gane ◽  
John Stoves ◽  
...  
Keyword(s):  
Action Research ◽  
End Of Life ◽  
Ethnic Minorities ◽  
End Of Life Care ◽  
Research Study ◽  
Life Care ◽  
Action Research Study ◽  
The Uk

Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home

2017 ◽  
Vol 16 (3) ◽  
pp. 260-268 ◽  
Author(s):  
Yoko Naoki ◽  
Yoshinobu Matsuda ◽  
Isseki Maeda ◽  
Hideka Kamino ◽  
Yoko Kozaki ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
End Of Life Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Family Satisfaction ◽  
Life Care ◽  
Care At Home

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

Participant Action Research With Staff Nurses in End-of-Life Care

2013 ◽  
Vol 15 (3) ◽  
pp. 156-162 ◽  
Author(s):  
Margaret Lunney ◽  
Patricia M. Caffrey ◽  
Sally Umbro
Keyword(s):  
Action Research ◽  
End Of Life ◽  
End Of Life Care ◽  
Staff Nurses ◽  
Life Care

Education Intervention “Caregivers Like Me” for Latino Family Caregivers Improved Attitudes Toward Professional Assistance at End-of-life Care

2015 ◽  
Vol 33 (6) ◽  
pp. 527-536 ◽  
Author(s):  
Dulce M. Cruz-Oliver ◽  
Theodore K. Malmstrom ◽  
Natalia Fernández ◽  
Manas Parikh ◽  
Jessica García ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Education Intervention ◽  
Life Care ◽  
Latino Family ◽  
Professional Assistance

scholarly journals End-of-Life Plans for African American Older Adults With Dementia

2018 ◽  
Vol 35 (10) ◽  
pp. 1314-1322 ◽  
Author(s):  
Karen O. Moss ◽  
Nancy L. Deutsch ◽  
Patricia J. Hollen ◽  
Virginia G. Rovnyak ◽  
Ishan C. Williams ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Life Care ◽  
Life Planning ◽  
Care Recipients ◽  
Life Plans ◽  
End Of Life Planning

African Americans are perceived to be least likely of all racial and ethnic groups to prepare for the end of life. However, verbal plans for the end of life are of particular importance to this population and may help understand why they are less likely to possess a formal end-of-life care planning document. The purpose of this study was to determine the number of formal and/or informal end-of-life care plans that existed among a convenience sample of African American older adults with dementia. For this descriptive study, data were collected from African American family caregivers (N = 65) of older adults with dementia. Descriptive statistics were conducted. Caregivers in this sample reported high rates of formal and/or informal end-of-life plans for their care recipients. Agency forms (power of attorney, health-care surrogate, or guardianship forms) had been obtained by 74% of the care recipients, while 63% of them possessed a formal end-of-life care planning document. All combined, 88% of the caregivers possessed at least 1 document or verbal information concerning end-of-life care for their care recipient or at least there was an assigned surrogate. Although limited, these findings reflect more end-of-life planning in this population than previous studies reported and could improve the quality of end-of-life outcomes in this population by giving health-care providers increased understanding of African American end-of-life planning preferences. This may, in turn, help the providers to inform and educate these care recipients and their family caregivers.

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