End-of-life care and bereavement: effect on family carers

2004 ◽  
Vol 3 (3) ◽  
pp. 144 ◽  
Author(s):  
Ladislav Volicer
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Carers

scholarly journals The challenge pathway: A mixed methods evaluation of an innovative care model for the palliative and end-of-life care of people with dementia (Innovative practice)

Dementia ◽  
2017 ◽  
Vol 17 (2) ◽  
pp. 252-257 ◽  
Author(s):  
Emily Harrop ◽  
Annmarie Nelson ◽  
Helen Rees ◽  
Dylan Harris ◽  
Simon Noble
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Family Carers ◽  
Care Model ◽  
Structured Interviews ◽  
Project Staff ◽  
Mixed Methods Evaluation ◽  
People With Dementia ◽  
Audit Data

An innovative service for the palliative and end-of-life care of people with dementia was introduced at a UK hospice. This evaluation involved analysis of audit data, semi-structured interviews with project staff (n=3) and surveys of family carers (n=15) and professionals (n=20). The service has increased access to palliative, end-of-life care and other services. Improvements were reported in the knowledge, confidence and care skills of family carers and professionals. Carers felt better supported and it was perceived that the service enabled more patients to be cared for at home or in their usual place of care.

scholarly journals How to support working family carers? British initiatives as a practical means to reduce loneliness in everyday life of family caregivers in Poland

Family Forum ◽  
2022 ◽  
Vol 11 ◽  
pp. 129-149
Author(s):  
Anna Maria Janowicz ◽  
Martyna Klimek ◽  
Piotr Krakowiak
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Full Time ◽  
Life Care ◽  
Family Carers ◽  
Difficult Situation ◽  
Educational Challenge ◽  
At Home

Among various publications regarding end-of-life care in Poland there is one piece of important research that shows a difficult situation for family caregivers in end-of-life care in Poland, who often lack recognition and support and face a lonely struggle, especially in home care settings (Janowicz, 2019a). The Polish Government published documents in support of family caregivers for the first time in 2019, recognizing respite care and allocating money to some of them. Poland has successfully implemented British standards of hospice and palliative care, making it the best in Central-Eastern Europe; the same could be done in supporting carers in family settings (Krakowiak, 2020a). We have already learnt and benefited from the experience of the British organisation Carers UK, who have been operating successfully for more than 50 years and working towards inclusion of formal and informal care (Klimek, 2020). But how can we move forward in helping those who face loneliness and feelings of helplessness as family carers? We can learn from those who have already developed tools and created strategies supporting family caregivers. Exploring the educational strategies of supporting organizations from the UK, will help to point towards possible solutions to this social and educational challenge in Poland, helping to reduce the loneliness of carers in the home care settings. Most families still feel isolated, while most of our local communities do not support those who care, often for many months and years. Social educators and social workers need to tackle the questions of loneliness and isolation that many family caregivers face. First steps have been made and first publications issued, but more robust strategies and practical solutions are needed. Newest facts and figures from Carers UK documents and Best Practice In Supporting Carers by Carer Positive Employer in Scotland (2020) will help to show existing strategies used for and by employers. Among many existing initiatives this one regarding combining care and work could be very important to recognise the needs of working carers, sharing their job with the duty of constant care at home. Action is urgently needed in Poland, where many people do a full-time job alongside caring at home. Recognition of family carers’ needs by their workplace, support from employers and flexibility in working hours is still a rare exception, and it should be changed. The Covid-19 pandemic has fully exposed the problems of carers of dependent people around the world and also in Poland, especially difficult for those who combine care with work.

Future provision of home end-of-life care: Family carers’ willingness for caregiving and needs for support

2020 ◽  
pp. 1-7
Author(s):  
Wallace Chi Ho Chan
Keyword(s):  
Psychological Distress ◽  
End Of Life ◽  
End Of Life Care ◽  
Assessment Tool ◽  
Family Members ◽  
Depression Scale ◽  
Support Needs ◽  
Life Care ◽  
Family Carers ◽  
Additional Support

Abstract Objective This study aimed to examine family carers’ willingness, perceived difficulties and confidence in providing home end-of-life care to family members in future and their needs for support for doing so. Specific focus was on whether significant differences were found between carers of low and high levels of psychological distress. Method Family carers who had been providing care to family members living in the community were recruited via a local elderly agency in Hong Kong. A survey was conducted. Carers were asked to complete a questionnaire which included self-developed items, the Hospital Anxiety and Depression Scale, and the Carers’ Support Need Assessment Tool. Results Of the 89 participants, 63.8% reported willingness to provide end-of-life care in future (increased to 78.5% if support needs were met), but most perceived it as difficult, and over half were not confident about doing so. The three greatest needs for support in end-of-life care are understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Participants of the high psychological distress group experienced a significantly greater need for support in “dealing with your feelings and worries” and “looking after your own health.” Significance of Results Current family carers may not be ready for future provision of home end-of-life care. Meeting their support needs in providing end-of-life care is crucial to ensure the continuity of care provision. Psychologically distressed carers may often ignore self-care and may need helping professionals’ additional support.

scholarly journals ‘It’s like trying to ice a cake that’s not been baked’: a qualitative exploration of the contextual factors associated with implementing an evidence-based information intervention for family carers at the end of life

2020 ◽  
Vol 21 ◽  
Author(s):  
Amy Mathieson ◽  
Karen Luker ◽  
Gunn Grande
Keyword(s):  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Evidence Based ◽  
Management Support ◽  
Life Care ◽  
Care Providers ◽  
Family Carers ◽  
Structured Interviews ◽  
Practice Development

Abstract Aim: To explore the introduction of an evidence-based information intervention – the ‘Caring for Someone with Cancer’ booklet – within home care and end-of-life care, to inform future implementation and practice development within this setting. Background: Family carers’ contribution is crucial to enable care and death of people at home. The ‘Caring for Someone with Cancer’ booklet received positive responses from family carers and District Nurses and is an evidence-based intervention designed to support carers to deliver basic nursing tasks. Further feasibility work was required to establish how it should be implemented. Little is known about how to successfully translate interventions into practice, particularly within home care settings and end-of-life care. Methods: Implementation of the ‘Caring for Someone with Cancer’ booklet, utilising a qualitative case study approach, in four home care sites. Semi-structured interviews, informed by Normalization Process Theory (NPT), were undertaken at implementation sites in May 2016–June 2017. Participants were generalist and specialist nurses, managers, and Healthcare Assistants (HCAs). A framework approach to analysis was adopted. Findings: Forty-five members of staff participated. Failed implementation was associated with organisational-level characteristics and conditions, including workforce composition and predictability of processes. Unstable work environments meant home care providers focused on short-term rather than long-term goals, precluding practice development. Staff’s perceptions of the time available to engage with and implement the intervention inhibited adoption, as many participants were “just getting through the day”. Implementation was successful in sites with explicit management support, including proactive implementation attempts by managers, which legitimatised the change process, and if all staff groups were engaged. To encourage uptake of evidence-based interventions in home care settings, practitioners should be given opportunities to critically reflect upon taken-for-granted practices. Future implementation should focus on work pertaining to the NPT construct ‘Collective Action’, including how staff interact and build confidence in new practices.

scholarly journals End of Life Care in the Home: Supporting and Sustaining Family Carers

2021 ◽  
Author(s):  
◽  
Jacqueline Rose Bowden-Tucker
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Palliative Care Service ◽  
Ageing Population ◽  
Life Care ◽  
Family Carers ◽  
Home Death

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

scholarly journals End of Life Care in the Home: Supporting and Sustaining Family Carers

2021 ◽  
Author(s):  
◽  
Jacqueline Rose Bowden-Tucker
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Palliative Care Service ◽  
Ageing Population ◽  
Life Care ◽  
Family Carers ◽  
Home Death

<p>Palliative care services within New Zealand aim to support care for terminally ill people and their family/ whānau, regardless of their disease or place of care. Increasingly consumers prefer that this care and support, including end of life care, is provided in their own home as opposed to hospital or care institutions and current health policies support this trend. The availability of family carers is widely acknowledged as pivotal to home palliation by ensuring physical care and emotional support for the patient is available outside that provided by formal (paid) carers and palliative care professionals entering the home. Literature searched found that family carers feel under prepared for their role and desire more support and information from health care professionals. How to achieve this is less clear. When considered against the backdrop of an ageing population and geographically dispersed families, it is forecast there will be increased incidence of dying patients with complex palliative care needs and a reduced carer population that may make the preference for home death increasingly problematic. Using purposive sampling techniques, six bereaved family carers, who were enrolled with a hospice palliative care service (HPCS) and had supported end of life care of a relative at home, were recruited. Utilising qualitative descriptive methodology this study sought to identify the key conditions under which their caring contribution was sustained. Data collection was by way of semi-structured interviews that were audiotaped and transcribed. Following coding, transcripts underwent qualitative content analysis and revealed three key themes and associated subthemes relating to: perception and acquisition of caring role; sustaining the role; now and looking back. Conclusions drawn from this research offer increased understanding of the enabling factors family carers experienced as supporting them in their role and achieving a home death for their relative.</p>

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