Search results for ‘Subject term:"end of life care"’ Sort:
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What constitutes good quality end-of-life care? Perspectives of people with intellectual disabilities and their families
- Authors:
- CITHAMBARM Kumaresan, DUFFY Mel, COURTNEY Eileen
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 18(3), 2021, pp.207-216.
- Publisher:
- Wiley
Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members. Methods: The study reported here aimed to find out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis. Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities. Conclusion: The findings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life. (Edited publisher abstract)
Mutual support between patients and family caregivers in palliative care: a systematic review and narrative synthesis
- Authors:
- McCAULEY Rachel, et al
- Journal article citation:
- Palliative Medicine, early cite April 2021,
- Publisher:
- Hodder Arnold
Background: Patients in palliative care are usually conceptualised as recipients of support from family caregivers. Family caregivers in palliative care are typically defined as providers of support to patients. Little is known about reciprocal dimensions of support provision between patients and family caregivers in palliative care. Aim: To identify processes of mutual support between patients and family caregivers in palliative care and factors that contribute to or obstruct mutual support between patients and family caregivers in palliative care. Design: Systematic review and narrative synthesis of original peer-reviewed research published between January 2000 and March 2020. Data sources: Medline, CINAHL, Embase, AMED, PsycINFO and PsycARTICLES. Results: After full-text screening, 10 studies were included. This study identified that patients and family caregivers in palliative care can support one another by mutually acknowledging the challenges they face, by remaining positive for one another and by jointly adapting to their changing roles. However, patients and family caregivers may not routinely communicate their distress to each other or reciprocate in distress disclosure. A lack of mutual disclosure pertaining to distress can result in conflict between patients and family caregivers. Conclusions: Few studies have focused in whole or in part, on reciprocal dimensions of support provision between patients with advancing non-curable conditions, and their family caregivers in palliative care. Further research is required to identify key domains of mutual support between patients and family caregivers in palliative care. (Edited publisher abstract)
Disclosure and plan of care at end of life: perspectives of people with intellectual disabilities and families in Ireland
- Authors:
- CITHAMBARAM Kumaresan, DUFFY Mel, COURTNEY Eileen
- Journal article citation:
- British Journal of Learning Disabilities, 48(4), 2020, pp.340-347.
- Publisher:
- Wiley
Background: Recently, more and more people with intellectual disabilities have been dying from life‐limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for decision‐making to occur at the end of life. Therefore, this study aimed to explore the perceptions of people with intellectual disabilities and families in terms of the information that is needed as part of end‐of‐life decision‐making. Materials and Methods: A qualitative approach was employed to explore the information needed by, and the decision‐making ability of, people with intellectual disabilities at the end‐of‐life phase. One‐to‐one interviews were carried out with nineteen people following the obtaining of ethical approval. The constant comparative method was used to analyse the data. Results: It was found that people with intellectual disabilities were comfortable with, and wished to know about, what was happening in their lives, including the existence of life‐limiting conditions, so that they would be able to create a good plan for their future care. It was also expressed how it was essential to create a plan of care that allowed professionals to provide excellent care and use of which prevented the occurrence of any ambiguity. Conclusions: The study found that people with intellectual disabilities, especially those with mild and moderate, are able to handle complex and sensitive information and make decisions for themselves regarding their care when adequate support is in place. (Edited publisher abstract)
Guidelines for nursing homes delivering end-of-life care to residents with dementia across the island of Ireland
- Authors:
- CAHILL Suzanne, DORAN Daphne, WATSON Max
- Journal article citation:
- Quality in Ageing and Older Adults, 13(1), 2012, pp.60-70.
- Publisher:
- Emerald
This study investigated the experiences of elderly spouses whose relatives died with end-stage dementia in nursing homes in both Northern Ireland (NI) and the Republic of Ireland (RoI), with a view to improving quality of life for people with end stage dementia living in residential care settings. The study aimed to draft guidelines to a multi-disciplinary group of health service professionals for their critical appraisal and ratification. Results indicated that the care delivered was deemed by most elderly spouses to be of high quality, with person centred, individual, kind, professional care highly valued. Areas of dissatisfaction included poor communication, lack of involvement in key decision making, and poor symptoms control. Based on the study's findings, guidelines for the delivery of quality care in long stay residential institutions were developed in consultation with eight health service professionals.
End-of-life care for people with intellectual disabilities: paid carer perspectives
- Authors:
- RYAN Karen, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(3), May 2011, pp.199-207.
- Publisher:
- Wiley
An increasing number of intellectual disability staff are now expected to care for service users towards the end-of-life. This study aimed to examine staff experiences of caring for a person with intellectual disabilities with palliative care needs and to explore the effects of this on staff. A total of 64 individuals from intellectual disability services working in different disciplines and a range of work settings took part in 12 focus groups. Interviews were analysed using framework analysis. The findings indicated that the participants were strongly motivated to provide high quality palliative care and felt the experience enriched practice. However, they considered themselves to be inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end-of-life care decision making was challenging; when staff felt ‘pushed out’ by relatives; and when staff did not have sufficient support or time to provide care or mourn the loss of service users. The study draws attention to areas where strategies should be developed to support staff in order to improve the quality of palliative care provided to people with intellectual disabilities.
Staff perceptions of essential prerequisites underpinning end-of-life care for persons with intellectual disability and advanced dementia
- Authors:
- McCARRON Mary, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(2), June 2010, pp.143-152.
- Publisher:
- Wiley
The philosophy behind today’s intellectual disability (ID) service system encompasses building independence, promoting skills and empowerment. However it is possible that this approach may be less helpful when supporting person with ID aging and coping with increased disability and the inherent decline evident in dementia. To better address palliative care and end-of-life issues for persons with intellectual disability (ID) and dementia, the authors set out to understand the perspectives of agency staff in both the ID services and specialist palliative care fields in Ireland. Thirteen focus group interviews were conducted involving 50 participants drawn from six ID service providers and seven participants from one specialist palliative care service. Thematic analysis collapsed ideas into two core themes: building upon services' history and personal caring, offering quality and sensitive care; and supporting comfort and optimal death in people with ID and advanced dementia. Challenges were identified for service systems in the areas of; aging in place, person-centred care, and interservice collaboration. The authors recommend both more practice relationship-based and collaborative approaches to care and a stronger evidence-based research program on the timing and the efficacy of palliative care for persons with ID and dementia.
Providing care for a person with late-stage dementia at home: What are carers’ experiences?
- Authors:
- DEMPSEY Laura, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 19(2), 2020, pp.352-374.
- Publisher:
- Sage
Background: It is widely reported that carers who provide care for a family member with dementia endure physical and psychological burdens. Not only do they fulfil an important role for the person with dementia but also for the wider society. This study aims to explore the experiences of carers who provide end-of-life care for a person with late-stage dementia at home. Method: Semi-structured interviews were conducted with 17 current carers and 6 past carers of a family member with late-stage dementia. Data was analysed using interpretative phenomenological analysis. Results: Four super-ordinate themes were identified which described the challenges faced by carers at different stages of their care giving journey: (1) The experience of dementia grief; (2) Parenting the parent; (3) Seeking support; (4) Death, dying and life after death. Conclusion: Dementia grief was experienced by carers as a result of a relationship change and an inability to recognise the person with dementia as their mother, father or spouse. A role transition ensued resulting in the carer adopting the role of parent. Carers expressed a desire to provide care for the person with dementia at home until the time of death; however, support is required in this area at both individual and community level. Family carers require education to help identify the dying phase which will assist to minimise the shock of death. Strong evidence suggests that the burden of care may leave family carers poorly equipped to adapt to life after the death of the person with dementia. Greater pre-death support is required to facilitate a better post bereavement adjustment. (Edited publisher abstract)
Medication use in patients with dementia at the end of life
- Author:
- CENTRE FOR AGEING RESEARCH AND DEVELOPMENT IN IRELAND
- Publisher:
- Centre for Ageing Research and Development in Ireland
- Publication year:
- 2012
- Pagination:
- 12p.
- Place of publication:
- Dublin
This research brief summarises a project evaluating the extent to which patient-related factors influence clinical decision making with regard to medication use in patients with endstage dementia. A survey was distributed to GPs and hospital doctors in both Northern Ireland and the Republic of Ireland. It included four scenarios designed to evaluate issues related to initiating, withholding, continuing or discontinuing specific medications in this patient group. Within each scenario, three separate patient-related characteristics were included as experimental conditions: place of residence; advance directive; and family involvement. There was considerable variation in decision-making among NI and ROI doctors about discontinuation of some medications, especially antibiotics and dementia medications including acetylcholinesterase inhibitors and memantine hydrochloride. The presence of an advance directive did not necessarily have an effect on doctor decision-making regarding medications. It is suggested that a proper understanding of the legal basis of advance directives is crucial for doctors. Practice guidelines for the prescription of medications such as statins and anti-psychotics for dementia patients are required as is building the evidence base on medication use to help in decision making. There are currently NHS guidelines covering NI but no equivalent in ROI. The report stresses the importance of taking account of the wishes and comfort of the patient and patient’s family when making decisions about end of life care in dementia.