scholarly journals Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Narin Aker ◽  
Emily West ◽  
Nathan Davies ◽  
Kirsten J. Moore ◽  
Elizabeth L. Sampson ◽  
...  
Keyword(s):  
End Of Life ◽  
Care Home ◽  
Care Transitions ◽  
Support Line ◽  
Telephone Support ◽  
Family Carers ◽  
Structured Interviews ◽  
Line Staff ◽  
Home Placement ◽  
Support Family

Abstract Background People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. Methods We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May–June 2020. Results An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. Conclusions Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

scholarly journals A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process, outcome and reflections

2021 ◽  
Author(s):  
Nathan Davies ◽  
Elizabeth L. Sampson ◽  
Emily West ◽  
Tanisha DeSouza ◽  
Jill Manthorpe ◽  
...  
Keyword(s):  
End Of Life ◽  
Decision Aid ◽  
Family Carers ◽  
Support Family

scholarly journals Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

2017 ◽  
Vol 9 (1) ◽  
pp. e4-e4 ◽  
Author(s):  
Glenys Caswell ◽  
Beth Hardy ◽  
Gail Ewing ◽  
Sheila Kennedy ◽  
Jane Seymour
Keyword(s):  
Action Research ◽  
Participatory Action Research ◽  
End Of Life ◽  
Third Sector ◽  
Training Programme ◽  
Family Carers ◽  
Participatory Action ◽  
Health And Social Care ◽  
Carer Support ◽  
Support Family

BackgroundFamily carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers.ObjectivesTo produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers.Process of developmentParticipatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers.Final training programmeThe outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator’s notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable.ConclusionThe programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.

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 do Admiral Nurses and care home staff help people living with dementia and their family carers prepare for end‐of‐life?

2020 ◽  
Vol 35 (4) ◽  
pp. 405-413
Author(s):  
Kirsten J. Moore ◽  
Sophie Crawley ◽  
Claudia Cooper ◽  
Elizabeth L. Sampson ◽  
Karen Harrison‐Dening
Keyword(s):  
End Of Life ◽  
Care Home ◽  
Family Carers ◽  
Care Home Staff

scholarly journals Approaching the end of life and dying with dementia in care homes: the accounts of family carers

2010 ◽  
Vol 20 (2) ◽  
pp. 114-127 ◽  
Author(s):  
J Hennings ◽  
K Froggatt ◽  
J Keady
Keyword(s):  
End Of Life ◽  
Terminal Illness ◽  
Care Home ◽  
Care Homes ◽  
Family Carers ◽  
Home Setting ◽  
Curative Care ◽  
The Family ◽  
Person With Dementia

SummaryResearch into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.

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 Online Mindfulness Stress Intervention for Family Carers of Children and Adults with Intellectual Disabilities: Feasibility Randomized Controlled Trial

Mindfulness ◽  
2020 ◽  
Vol 11 (9) ◽  
pp. 2161-2175
Author(s):  
Samantha Flynn ◽  
Richard P. Hastings ◽  
Christine Burke ◽  
Simon Howes ◽  
Yona Lunsky ◽  
...  
Keyword(s):  
Randomized Controlled Trial ◽  
Intellectual Disabilities ◽  
Study Design ◽  
Controlled Trial ◽  
Cost Effective ◽  
Telephone Support ◽  
Family Carers ◽  
Structured Interviews ◽  
Post Intervention ◽  
Randomized Controlled

Abstract Objectives Family carers of people with intellectual disabilities (ID) are twice as likely as other carers to experience stress and mental ill-health, but research exploring interventions is sparse. Online mindfulness may provide an accessible, cost-effective resource. The addition of guided telephone support could help to tailor an existing intervention for this population. A feasibility randomized controlled trial (RCT) was conducted to inform the development of a definitive RCT. Methods Sixty participants were randomized to complete Be Mindful (a brief online mindfulness intervention) either with or without additional Peer Mentor support. Feasibility of recruitment, retention, intervention adherence, and acceptability of study design was examined. Preliminary analyses were undertaken on participant-reported outcomes pre- and post-intervention. Eighteen semi-structured interviews were conducted as a process evaluation. Results Feasibility outcomes indicate that it would be possible to recruit and retain (88%) participants to a definitive RCT, and that the study design and intervention are acceptable. The addition of guided telephone support was not burdensome; indeed, it was additionally motivating. Telephone support can be delivered with high fidelity, but this is inconsistent and requires further piloting. Preliminary comparison data indicate small, but non-significant, improvements for participants receiving guided telephone support relative to those who did not over time. Conclusions It is feasible to deliver online mindfulness with additional telephone-guided support to family carers of people with ID, and this may lead to small benefits over receiving online mindfulness alone. A definitive RCT can be planned to examine the effectiveness and cost-effectiveness of this intervention.

scholarly journals “In the Bengali Vocabulary, There Is No Such Word as Care Home”:Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home

2019 ◽  
Author(s):  
Ruminda Herat-Gunaratne ◽  
Claudia Cooper ◽  
Naaheed Mukadam ◽  
Penny Rapaport ◽  
Monica Leverton ◽  
...  
Keyword(s):  
Care Home ◽  
Care Recipient ◽  
Family Carers ◽  
Structured Interviews ◽  
Indian Family ◽  
People With Dementia ◽  
Care Family ◽  
Care Models ◽  
Design And Methods ◽  
At Home

Abstract Background and Objectives We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers’ understanding of, and attitudes to dementia, we explored how carers’ cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services. Research Design and Methods We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed. Results We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks. Discussion and Implications Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.

scholarly journals How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Yvonne N. Becqué ◽  
Judith A. C. Rietjens ◽  
Agnes van der Heide ◽  
Erica Witkamp
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Assessment Tools ◽  
Structured Interviews ◽  
Care Family ◽  
The Individual ◽  
Education Support ◽  
Support Family ◽  
At Home

Abstract Background Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers. Methods Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach. Results We identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers’ needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations. Conclusions Nurses tend to address family caregivers’ needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers’ needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers’ needs and to provide appropriate support.

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