What is important at the end of life for people with dementia? The views of people with dementia and their carers

Hill, Sarah; Mason, Helen; Poole, Marie; Vale, Luke; Robinson, Louise

doi:10.1002/gps.4564

Cited by 34 publications

(49 citation statements)

References 26 publications

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“…We used Q-methodology to identify family caregiver profiles. In recent years, this method has been widely used in the field of healthcare research [17,22,[25][26][27][28][29][30][31]. Q-methodology combines qualitative and quantitative research methods in order to identify groups of persons who share similar viewpoints about a specific topic and therefore belong to a certain type or profile [32,33].…”

Section: Q-methodologymentioning

confidence: 99%

“…Healthcare professionals generally take sufficient time to answer questions [8] and listen to their wishes [20]. They do not wish to be more involved in decisions about their relatives' care [27] "They really got me involved. I needed that but it happened too.".…”

Section: + Supportive Relationshipsmentioning

confidence: 99%

“…[…] It was really uncoordinated and they just blamed it on one another.". Healthcare professionals do not listen sufficiently to their wishes [20] and pay little attention to their habits [15], while they would welcome being more involved in care-related decisions [27] "Yes, with the general practitioner toothat they should have got me involved earlier rather than in the final stage and then you get all that to deal with. And I just find that… well it went totally wrong and I just find that a pity.".…”

Section: -Omission Of Supportive Relationshipsmentioning

confidence: 99%

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Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

et al. 2020

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Background: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. Methods: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. Results: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. Conclusions: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.

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Section: Q-methodologymentioning

confidence: 99%

Section: + Supportive Relationshipsmentioning

confidence: 99%

Section: -Omission Of Supportive Relationshipsmentioning

confidence: 99%

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Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

et al. 2020

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“…This activity will allow for comparison of patients’ sorting patterns, resulting in the identification of salient viewpoints, that is, holistic expressions of what matters most to participants in terms of the care provided in RACFs. Q methodology is a method that has been successfully used in studies of care staff, residents, residents’ family members, and individuals with early stages of dementia,44–46 as well as in studies on prioritisation and priority setting 47 48…”

Section: Methods and Analysismentioning

confidence: 99%

Understanding the priorities of residents, family members and care staff in residential aged care using Q methodology: a study protocol

et al. 2019

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IntroductionResidential aged care facilities (RACFs) are under increasing pressure to provide high-quality, round the clock care to consumers. However, they are often understaffed and without adequate skill mix and resources. As a result, staff must prioritise care by level of importance, potentially leading to care that is missed, delayed or omitted. To date, the literature on prioritisation and missed care has been dominated by studies involving nursing staff, thereby failing to take into account the complex networks of diverse stakeholders that RACFs comprise. This study aims to investigate the priorities of residents, family members and care staff in order to make comparisons between how care is prioritised in RACFs by the different stakeholder groups.Methods and analysisThis study comprises a Q sorting activity using Q methodology, a think-aloud task, a demographics questionnaire and semi-structured interview questions. The study will be conducted in five RACFs across NSW and QLD, Australia. Using purposive sampling, the project will recruit up to 33 participants from each of the three participant groups. Data from the Q sorting activity will be analysed using the analytic software PQMethod to identify common factors (shared viewpoints). Data from the think-aloud task and semi-structured interviews questions will be thematically analysed using the Framework Method and NVivo qualitative data analysis software.Ethics and disseminationThe study has been approved by St Vincent’s Health and Aged Care Human Research and Ethics Committee and Macquarie University Human Research Ethics Committee. It is expected that findings from the study will be disseminated: in peer-reviewed journals; as an executive report to participating facilities and a summary sheet to participants; as a thesis to fulfill the requirements of a Doctor of Philosophy; and presented at conferences and seminars.

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“…The intervention comprised a dementia nurse specialist (DNS), working with primary, secondary and community care teams, providing EoL care focused on seven key areas (see Table 1). 16,17 These features are key to the design of the DNS, and so understanding the value that is placed on these features should be measured when evaluating the DNS.…”

Section: Introductionmentioning

confidence: 99%

The value of dementia care towards the end of life—A contingent valuation study

Bhattarai

Mason

Kernohan

et al. 2020

Int J Geriat Psychiatry

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Objectives A dementia nurse specialist (DNS) is expected to improve the quality of care and support to people with dementia nearing, and at, the end of life (EoL) by facilitating some key features of care. The aim of this study was to estimate willingness‐to‐pay (WTP) values from the general public perspective, for the different levels of support that the DNS can provide. Methods Contingent valuation methods were used to elicit the maximum WTP for scenarios describing different types of support provided by the DNS for EoL care in dementia. In a general population online survey, 1002 participants aged 18 years or more sampled from the United Kingdom provided valuations. Five scenarios were valued with mean WTP value calculated for each scenario along with the relationship between mean WTP and participant characteristics. Results The mean WTP varied across scenarios with higher values for the scenarios offering more features. Participants with some experience of dementia were willing to pay more compared with those with no experience. WTP values were higher for high‐income groups compared with the lowest income level (P < .05). There was no evidence to suggest that respondent characteristics such as age, gender, family size, health utility or education status influenced the WTP values. Conclusion The general population values the anticipated improvement in dementia care provided by a DNS. This study will help inform judgements on interventions to improve the quality of EoL care.

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What is important at the end of life for people with dementia? The views of people with dementia and their carers

Cited by 34 publications

References 26 publications

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

Understanding the priorities of residents, family members and care staff in residential aged care using Q methodology: a study protocol

The value of dementia care towards the end of life—A contingent valuation study

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