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 ◽  
...  

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.

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.


2010 ◽  
Vol 24 (8) ◽  
pp. 828-838 ◽  
Author(s):  
J. Hockley ◽  
J. Watson ◽  
D. Oxenham ◽  
S.A. Murray

2020 ◽  
Vol 32 (S1) ◽  
pp. 1-2

Personal Narratives of AgeingPersonal Narratives of Ageing: This paper presents personal narratives reflecting on the ageing process, and growing older in the UK.This presentation reflects on self-written narratives from 170 respondents to a mass observation directive, focusing on the experiences of growing older. Narrative methods are theoretically and methodologically diverse, and are helpful in social research to understand events or happenings in human lives. This data presents accounts from a heterogeneous sample in the form of self-penned responses. These experience-centred narratives bring stories of personal understanding into being by means of the first-person description of past, present, future or imaginary experiences of later life. This presentation will focus on the findings with reference to mental and physical and impacts, both real and anticipated to the ageing experience. We will also explore themes arising from the data including gender differences, age-cohort effects and stigma.The data should be utilised to inform Health and Social Care education and practice, particularly in co-producing appropriate person-centred services with older people.The Health Impact of Financial Fraud: ‘Scams’The Health Impact of financial fraud: This presentation will offer new and alternative insights into fraud and the health effects on older people, using data from the mass observation directive. The term utilised for such crimes in the UK is ‘Scam’.The paper reports data captured from a Mass Observation Project “Directive” focusing on ‘scams’ (see the UK definition of ‘scam’ below) and the impact on individuals. One hundred and forty-four ‘Observers’ responded to the ‘Directive’. Narratives indicate that victimisation to a scam may have negative impacts on individuals’ mental wellbeing, self-esteem, and relationships with others. Furthermore, data analysis identified that fear of victimisation can also affect individuals, resulting in worry, anxiety, and maladaptive coping strategies.Offering further understanding of the health impacts of ‘scams’ highlights the necessity to legitimise the issue as a public health concern.A scam is interpreted to be: a misleading or deceptive business practice where you receive an unsolicited or uninvited contact (for example by email, letter, phone or ad) and false promises are made to con you out of money (Office of Fair Trading 2006).Perceptions of DementiaPerceptions of Dementia: This paper (Exploring public perceptions and understanding of dementia: Analysing narratives from the Mass Observation Project, (Olsen et al 2019) presents a perspective on the public knowledge and understanding about dementia not previously considered, where respondents have written openly about their own experiences, and reflected on their perception of the wider public’s knowledge and understanding about dementia.This paper considers narratives of 143 respondents (“Observers”) to a Mass Observation Project Directive exploring individuals’ perceptions of dementia. Perceptions of dementia held by “Observers” with experience of dementia and those without differed sharply. “Observers” with experience of dementia offered insight into living with, and caring for, a person with dementia; including the impact this had on their lives and personal relationships. Whereas, “Observers” with no direct experience of dementia focused more on common disease symptoms, such as memory loss and reflected idealised views of care. “Observers” often feared being diagnosed with dementia themselves. This suggests education to facilitate care planning and ameliorate fears held by the public is required.Previously, perceptions of dementia have been captured utilising traditional research methods and samples drawn mainly from professionals. This new approach identifies public understanding of dementia, highlighting areas concern, and supplements the existing UKOlsen, V., Taylor, L., Whitely, K., Ellerton, A., Kingston, P. & Bailey, J. Exploring public perceptions and understanding of dementia: Analysing narratives from the Mass Observation Project. Dementia: The International Journal of Social Research and Practice.https://doi.org/10.1177/1471301219861468.End of life careThis paper considers narratives from two Mass Observation Directives exploring individuals’ perceptions of dementia (n=143) and personal narratives of ageing (n=170). ‘End of Life Care’ has, in a UK context, focused on care and support for individuals in the last months or years of their life. Care planning and management of this stage in the life course usually incorporates symptom management and emotional support for the individual, the family and carers. Whilst patient choice, involvement and co-production of the care plan is widely advocated to promote a dignified death, responses to the mass observation directives also reflect the need to revisit the options for individuals with a diagnosis of dementia and other life limiting illness. There was, in particular, a renewed call to return to the ‘euthanasia’ debate and to encourage discussion and end of life decisions to be undertaken earlier in the life course, prior to any diagnosis of a life limiting illness. As people’s attitudes and behaviours towards end of life care planning change, it is imperative to ascertain current perspectives to inform and guide future direction of social policy and services.


2019 ◽  
Vol 10 (4) ◽  
pp. 469-477 ◽  
Author(s):  
Katherine Hunt ◽  
Jane Bernal ◽  
Rhian Worth ◽  
Julia Shearn ◽  
Paul Jarvis ◽  
...  

BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.AimTo describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.DesignNationwide population-based postbereavement survey.Participants38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.ResultsDecedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population.ConclusionsAccess to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.


Author(s):  
Lorna Templeton ◽  
Sarah Galvani ◽  
Marian Peacock

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.


2021 ◽  
pp. 026921632110233
Author(s):  
Cari Malcolm ◽  
Katherine Knighting

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.


2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.


2019 ◽  
Vol 57 (1) ◽  
pp. 93-99 ◽  
Author(s):  
Paola Di Giulio ◽  
Silvia Finetti ◽  
Fabrizio Giunco ◽  
Ines Basso ◽  
Debora Rosa ◽  
...  

2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Lucy Ellen Selman ◽  
Lisa Jane Brighton ◽  
Vicky Robinson ◽  
Rob George ◽  
Shaheen A. Khan ◽  
...  

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