scholarly journals Bereavement during the Covid-19 pandemic in the UK: What do we know so far?

Bereavement ◽  
2022 ◽  
Vol 1 ◽  
Author(s):  
Emily Harrop ◽  
Lucy Selman
Keyword(s):  
Mental Health ◽  
Social Networks ◽  
End Of Life ◽  
End Of Life Care ◽  
Research Evidence ◽  
Coping Mechanisms ◽  
Informal Support ◽  
Evidence Based ◽  
Life Care ◽  
The Uk

The Covid-19 pandemic has been a devastating mass bereavement event, with measures to control the virus leading to unprecedented changes to end-of-life and mourning practices. In this review we consider the research evidence on the experiences of people bereaved during the pandemic. We summarise key findings reported in the first five publications from our UK-based Bereavement during COVID-19 study, drawing comparisons with available evidence from other studies of bereavement during the pandemic. We summarise these findings across three main topics: experiences at the end of life and in early bereavement; coping and informal support during the pandemic; and access to bereavement and mental health services. The synthesis demonstrates the exceptional challenges of pandemic bereavement, including high levels of disruption to end-of-life care, dying and mourning practices as well as to people’s social networks and usual coping mechanisms. We identified considerable needs for emotional, therapeutic and informal support among bereaved people, compounded by significant difficulties in receiving and accessing such support. We provide evidence-based recommendations for improving people’s experiences of bereavement and access to support at all levels.

scholarly journals When “Good Enough” Isn’t Good Enough: Interdisciplinary Perspectives on Caring for Adults Using Substances at the End of Life

2021 ◽  
Author(s):  
Lorna Templeton ◽  
Sarah Galvani ◽  
Marian Peacock
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Structured Interview ◽  
Life Care ◽  
Snowball Sampling ◽  
Policy And Practice ◽  
Template Analysis ◽  
Health And Social Care ◽  
The Uk ◽  
Key Terms

AbstractThis paper draws on data from one strand of a six-strand, exploratory study on end of life care for adults using substances (AUS). It presents data from the key informant (KI) strand of the study that aimed to identify models of practice in the UK. Participant recruitment was purposive and used snowball sampling to recruit KIs from a range of health and social care, policy and practice backgrounds. Data were collected in 2016–2017 from 20 KIs using a semi-structured interview approach. The data were analysed using template analysis as discussed by King (2012). This paper focusses on two of seven resulting themes, namely “Definitions and perceptions of key terms” in end of life care and substance use sectors, and “Service commissioning and delivery.” The KIs demonstrated dedicated individual practice, but were critical of the systemic failure to provide adequate direction and resources to support people using substances at the end of their lives.

Serious Mental Illness and Hospice Care

2021 ◽  
pp. 082585972110220
Author(s):  
Gwen Levitt
Keyword(s):  
Mental Health ◽  
End Of Life ◽  
End Of Life Care ◽  
Psychiatric Illness ◽  
Hospice Care ◽  
Treatment Options ◽  
Life Care ◽  
Case Review ◽  
Health Community ◽  
End Stage

There are a small number of articles in the literature discussing palliative and end-of-life care in the SMI population. Most tackle the questions relating to competency to refuse care in end-stage anorexia or terminal medical conditions. This is a case review of a 55 year old patient with a complex psychiatric and medical history, who despite extensive treatment and long hospitalizations has failed to regain any ability to care for her basic needs. She has exhausted all available treatment options and her prognosis is extremely poor. The mental health community is resistant to discussing and/ or confronting the fact that such a patient faces with the need for end-of-life care directly related to chronic psychiatric illness.

scholarly journals Primary care physicians’ educational needs and learning preferences in end of life care: A focus group study in the UK

2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Lucy Ellen Selman ◽  
Lisa Jane Brighton ◽  
Vicky Robinson ◽  
Rob George ◽  
Shaheen A. Khan ◽  
...  
Keyword(s):  
Primary Care ◽  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Physicians ◽  
Educational Needs ◽  
Learning Preferences ◽  
Life Care ◽  
Focus Group Study ◽  
The Uk

scholarly journals Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability

2018 ◽  
Vol 24 (6) ◽  
pp. 366-382 ◽  
Author(s):  
Ruth Northway ◽  
Stuart Todd ◽  
Katherine Hunt ◽  
Paula Hopes ◽  
Rachel Morgan ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
End Of Life ◽  
Nursing Care ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Nursing Support ◽  
Respiratory Problems ◽  
The Uk ◽  
The Impact

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.

Managing End-of-Life Care

2012 ◽  
Author(s):  
John W. Albarran ◽  
Marika Hills
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Delivery ◽  
Symptom Relief ◽  
Death And Dying ◽  
Past Century ◽  
Life Care ◽  
Care Needs ◽  
Definition Of ◽  
The Uk

This chapter addresses the fundamental nursing role of managing end-of-life care. Death is as fundamental a part of life as living, and while caring for a dying patient and their family is demanding, complex, and emotionally exhausting, it can also be a gratifying and privileged experience for nurses. Specifically, nurses have a centre-stage role in leading and informing care delivery at the end of life. Care will typically embrace assessing the needs of the patient and family, providing symptom relief and comfort care, and providing cultural and spiritual support. Additionally, caring functions should also extend following death to caring for the deceased in a dignified manner and supporting the newly bereaved, demonstrating genuine concern, compassion, and effective communication skills (Hills and Albarran, 2010a; Maben et al., 2010). To examine the key themes and challenges of practice, it is important to understand the political, professional and societal influences, and contextual nature of death and dying in the UK. At present, there is neither a clear nor universally accepted definition of end-of-life care, but it is generally understood to be the care of a person who is identified as having failing health and who is in a progressive state of decline (Shipman et al., 2008). Establishing the last phase of a patient’s life can be a difficult and complex process, and this might occur:…● after the diagnosis of a life-limiting condition; ● during the transition or deterioration of a chronic disease illness; ● when there is an increasing frailty combined with greater dependence on care provision, particularly in the older adult; ● following a sudden infective episode, cardiac event, or a life-threatening accident….The last phase of end-of-life care is referred to as the dying phase. Consideration of the end-of-life care needs of people with chronic terminal conditions should begin at diagnosis, and must embrace after-death care and family support. Over the past century, progress and advancement in disease management, together with improvements in living standards, have resulted in changes to the national death profile, with currently two-thirds of the 0.5 million annual deaths in the UK occurring in people over 75 years of age.

Palliative and end-of-life care for people with learning disabilities

2019 ◽  
pp. 777-784
Keyword(s):  
Learning Disabilities ◽  
Intellectual Disability ◽  
Learning Disability ◽  
End Of Life ◽  
Early Onset ◽  
End Of Life Care ◽  
Life Care ◽  
The World ◽  
The Uk

This chapter highlights some of the issues and challenges which exist in the provision of palliative and end-of-life care for people with learning disabilities and how some of these can be addressed. The challenges fall into four key areas: assessment, communication, consent, and bereavement. The reader is also signposted to websites and resources which are helpful in caring for people with learning disability at the end of their life. Concerns exist around choice and the quality of end-of-life care that people with learning disabilities may be offered. A number of different terms have evolved over the years for ‘learning disability’. Currently this term is used in the UK, but in Europe and in other parts of the world, the term ‘intellectual disability’ is used. Internationally there is a consensus that a learning disability can be identified when the following criteria are present: intellectual impairment (known as reduced IQ), social or adaptive dysfunction combined with reduced IQ, and early onset. It is thought that around 2.5% of the population in the UK has a learning disability, but it has also been predicted that this may increase by 1% per year over the next number of years.

scholarly journals Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Sue Duke ◽  
◽  
Natasha Campling ◽  
Carl R. May ◽  
Susi Lund ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Research Evidence ◽  
Care Transitions ◽  
Family Members ◽  
Life Care ◽  
The Family ◽  
Acute Hospitals ◽  
Pilot Implementation ◽  
Context Specific

Abstract Background Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals. Methods The aim of the study was to implement research evidence for family support at the end-of-life in acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts in England to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated through data comprised of reflective records of intervention delivery (n = 22), in-depth records of telephone implementation support meetings between research team members and co-researchers (n = 3), and in-depth evaluation meetings (n = 2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation. Results Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The intervention changed family support from being solely patient-focused, providing information about patient needs, to family-focused, identifying family concerns about the significance and implications of discharge and facilitating family-focused care. Co-researchers reported an increase in family members’ involvement in discharge decisions and end-of-life care planning. Conclusion The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end-of-life care transitions. This subsequently informed a larger scale implementation study. Trial registration n/a.

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