Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review.
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ABSTRACT: Background
Overtreatment in advanced age i.e. aggressive interventions that do not improve survival and are potentially harmful, can impair quality of care near the end of life (EOL). As healthcare provider perspectives on care quality may differ from that of service users, the aim of this study was to explore the views of older patients near EOL or their caregivers about the quality of health care at the EOL based on their lived experience, and to identify healthcare service improvements.Methods
Medline and backward citation searches were conducted for qualitative or quantitative studies reported on the views of patients and/or informal caregivers about EOL care quality. Thematic analysis was used to summarise qualitative data (primary analysis); narrative and tabulations were used to summarise quantitative data (secondary analysis).Results
Thirty articles met the inclusion criteria. Five main qualitative themes regarding quality care emerged: (1) Effective communication between clinicians and patients/caregivers; (2) Healthcare that values patient preferences and shared decision making; (3) Models of care that support quality of life and death with dignity; (4) Healthcare services that meet patient expectations; and (5) Support for informal caregivers in dealing with EOL challenges. The quantitative articles supported various aspects of the thematic framework.Conclusion
The findings of this study show that many of the issues highlighted by patients or bereaved relatives have persisted over the past two decades. There is an urgent need for comprehensive evaluation of care across the healthcare system and targeted redesign of existing EOL care pathways to ensure that care aligns with what patients and informal caregivers consider high-quality patient-centred care at the EOL.
SUBMITTER: Motamedi M
PROVIDER: S-EPMC8690959 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectivesThere is a lack of research on the specific experiences and needs of geographically distant kin caregivers in end-of-life situations. Clinicians and researchers would benefit from a systematic overview. The scoping review aimed at examining the international literature on the experiences and needs of informal long-distance (LD) caregivers at the end of life, to address gaps in the evidence base, and to make recommendations for further research.DesignThe scoping review was conducted according to the methodological framework of Arksey and O'Malley. Studies of various designs involving kin caregivers were analysed narratively.Data sourcesA highly sensitive strategy was used to search CINAHL, Google Scholar, PsycInfo, PubMed and Web of Science Core Collection, from inception to 8 November 2021, with searches rerun in CINAHL, PsycInfo and PubMed on 31 January 2023. An additional hand search of the reference lists of the identified articles was performed.ResultsTwo authors independently assessed the titles and abstracts of 3827 scientific papers. As a result, 89 full texts were reviewed and 20 articles plus one review were included in the review. Five major themes were identified: (1) LD as a barrier to caregiving, (2) communication difficulties and the role of video and telephone calls, (3) the burdens and benefits of LD caregiving, (4) interaction and conflict with local caregivers and (5) LD caregivers' wishes and needs for support.ConclusionsFurther quantitative and mixed-methods studies should be undertaken to improve our understanding of LD caregiving for relatives at the end of life. Studies to explore the feasibility and implementation of communication technologies in end-of-life LD caregiving are also needed.
| S-EPMC10124274 | biostudies-literature
Project description:ObjectiveA longer life expectancy increases the number of older adults who require long-term care. The presence of a caregiver at home prevents the placement of older adults in care facilities. Identifying the caregivers' viewpoints around the care clarifies key factors in providing quality care.This study aimed to assess barriers to home care from the perspective of Iranian informal caregivers of older adults.DesignThis was a qualitative study with content analysis. Semistructured interviews were conducted via telephone in Persian with informal caregivers of older adults using open-ended questions.SettingSocial and health organisations in southern Tehran, Iran.ParticipantsSeventeen informal caregivers were selected on purpose. Participants were eligible to participate in the study if they were 18 years or older, and had at least 1 month of care experience for a minimum of 6 hours per week.ResultsBarriers to home care for older adults from informal caregivers' points of view were categorised into three domains: (1) Individual barriers include the physical, mental and social burden of care as well as personal characteristics of the caregiver; (2) interpersonal barriers include psychobehavioural characteristics of the older adult and misbehaviour of people around the caregiver and (3) care system barriers include inefficient institutional/organisational infrastructure, moral issues and inefficiency in public policy.ConclusionsOur study showed multiple individual, interpersonal and care system barriers to home care for older adults. Specific contextual challenges among Iranian caregivers, such as their attitudes and beliefs, as well as a lack of social and healthcare support for families, hindered the quality of care.Trial registration numberIRCT20201012048999N1.
| S-EPMC9730353 | biostudies-literature
Project description:BackgroundThis scoping review aimed to investigate the presence of discordance or concordance in the perceptions of end-of-life (EOL) care quality between consumers (i.e. patients aged over 60 in their last years of life and/or their informal caregivers) and clinicians, to inform further improvements in end-of-life care service delivery.MethodsA scoping review of qualitative and quantitative studies was systematically undertaken by searching for English language publications in MEDLINE database and manual reference search of eligible articles. Thematic analysis was employed to identify and extract common concordance and discordance themes leading to the development of analytical constructs. Articles were eligible for inclusion if they reported on consumers' (i.e. older patients aged 60 + years in their final years of life and/or their informal caregivers) and clinicians' (doctors, nurses, social workers, etc.) perspectives on quality of medical, surgical or palliative/supportive care administered to older adults in the last year of life across all healthcare settings.ResultsOf the 2736 articles screened, 21 articles were included. Four themes identified concordance between consumers' and clinicians' perceptions of care quality: holistic patient care; coordinated care that facilitated EOL; the role of family at EOL; and impact of prognostic uncertainty on care planning. Three themes emerged for discordance of perceptions: understanding the patient needs at EOL; capacity of healthcare system/providers to accommodate family needs; and knowledge and communication of active or palliative care at EOL.ConclusionsWhile progress has been made on promoting patient autonomy and respecting the family role in representing patient's best interest, gaps remain in terms of care coordination, communication of prognosis, public understanding of the meaning of goals of care including de-escalation of management and enactment of advance care directives by clinicians for people with diminished decision capacity. Public understanding of the meaning of "comfort" care and the need to prevent over-treatment are essential for their satisfaction with care and their ability to embrace the concept of a good death.
| S-EPMC8359918 | biostudies-literature
Project description:ObjectivesPopulation ageing and the prevalence of multimorbidity represent major challenges for healthcare systems. People who need long-term care have complex conditions requiring both health and social services. Informal caregivers are emerging as an important part of the long-term care ecosystem. This paper aims to explore the position and capacities of informal caregivers in Croatia.DesignHealth and social care legislative documents were analysed using a structured set of keywords. In addition, focus groups were conducted with informal caregivers who cared for a family member. The qualitative method of thematic analysis was used.Setting and participantsTwo focus groups were conducted with 15 caregivers (13 women and 2 men). Geographically, participants came from all four NUTS2 Croatian regions. All participants cared for a close family member. The length of care provision ranged from 3 to 35 years. Focus groups were conducted using the Zoom platform.ResultsThe analysis of the documents indicates the fragmentation of national policy into health and social policy. Long-term care as a term is recognised only in health policy. However, some components related to long-term care are part of social policy. Caregivers are recognised in social policy, although not in healthcare. In focus groups, three main themes were identified as follows: (1) position and role of the caregivers in the system and society; (2) types of care based on the recipient's need and (3) support for the caregivers.ConclusionThe research showed that the process of exercising certain rights and services for caregivers is not sufficiently clear and feasible in practice. There is a lack of a clearly defined role of caregivers and relationships towards professional care providers in the system. The key to improving long-term care is connecting community services, including health and social services, both formal and informal, with the process of providing care.
| S-EPMC10582946 | biostudies-literature
Project description:BackgroundThe existing evidence shows that the pattern of health expenditure differs considerably between people at the end-of-life and people in other periods of their lives. The awareness of these differences, combined with a detailed analysis of future mortality rates is one of the key pieces of information needed for health spending prognoses. The general objective of this review was to identify and map the existing empirical evidence on end-of-life expenditure related to health care for the older population.MethodsTo achieve the objective of the study a systematic scoping review was performed. There were 61 studies included in the analysis. The project has been registered through the Open Science Framework.ResultsThe included studies cover different kinds of expenditure in terms of payers, providers and types of services, although most of them include analyses of hospital spending and nearly 60% of analyses were conducted for insurance expenditure. The studies provide very different results, which are difficult to compare. However, all of the studies analyzing expenditure by survivorship status indicate that expenditure on decedents is higher than on survivors. Many studies indicate a strong relationship between health expenditure and proximity to death and indicate that proximity to death is a more important determinant of health expenditure than age per se. Drawing conclusions on the relationship between end-of-life expenditure and socio-economic status would be possible only by placing the analysis in a broader context, including the rules of a health system's organization and financing. This review showed that a lot of studies are focused on limited types of care, settings, and payers, showing only a partial picture of health and social care systems in the context of end-of-life expenditure for the older population.ConclusionThe results of studies on end-of-life expenditure for the older population conducted so far are largely inconsistent. The review showed a great variety of problems appearing in the area of end-of-life expenditure analysis, related to methodology, data availability, and the comparability of results. Further research is needed to improve the methods of analyses, as well as to develop some analysis standards to enhance research quality and comparability.
| S-EPMC10905877 | biostudies-literature
Project description:BackgroundNursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff.ObjectiveThis review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver.DesignScoping review.MethodsA literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review.ResultsNine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills.ConclusionsThis review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other.
| S-EPMC10559445 | biostudies-literature
Project description:IntroductionBesides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions.AimsTo explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years.MethodsA scoping review was conducted and reported following PRISMA guidelines. Five electronic databases and reference lists of eligible publications were searched for original works in English or Italian, published between January 2000 and February 2021. Two independent raters assessed studies' eligibility and extracted data; a third rater resolved disagreements. Extracted care needs were analyzed using a Best fit framework synthesis approach.ResultsOut of 2,534 records preliminarily identified, 15 studies were included in the review and 266 care needs were extracted. All studies were conducted in Western countries. Research methods primarily consisted of qualitative interviews and focus groups (14 studies, 93.3%); head and neck cancer was the most frequent cause of patients' dysphagia (8 studies, 53.3%); caregivers' perspective was seldom investigated (5 studies, 33.3%). Both patients and caregivers primarily reported social (N = 77; 28.9%) and practical (N = 67; 25.2%) needs, followed by informational (N = 55; 20.7%) and psychological (N = 54; 20.3%) ones. Only patients reported physical needs (N = 13; 4.9%), while spiritual needs were not cited.ConclusionsThe recurrence of personal and social needs besides physical ones highlighted the manifold impact of OD on patients' and caregivers' lives. Larger and more focused studies are required in order to design tools and interventions tailored to patients' and caregivers' needs.
| S-EPMC8460009 | biostudies-literature
Project description:Background & aimsManagement of end-stage liver disease (ESLD) has implications for not only patients' quality of life (QOL), but also their caregivers'. We aimed to identify characteristics of patients with ESLD and their caregivers that are associated with QOL.MethodsWe obtained cross-sectional baseline data from patients and their caregivers (132 dyads; 62% were married or partners), recruited from outpatient hepatology clinics within 2 healthcare centers. Patients were included if their model for end-stage liver disease score was 15 or more; caregivers were identified by the patient as the primary informal caregiver. QOL was measured by the SF-36 and relationship quality using the mutuality scale. We measured uncertainty using the uncertainty in illness scales for patients and caregivers. Multilevel modeling was used to analyze the data.ResultsRefractory ascites was associated with worse physical QOL for patients (unstandardized beta [B], -9.19; standard error [SE], 2.28) and caregivers (B, -5.41; SE, 2.33); history of hepatic encephalopathy was associated with worse patient physical QOL (B, -3.86; SE, 1.65). High levels of uncertainty were associated with worse physical and mental QOL for both members of the dyads; relationship quality was significantly associated with patient mental QOL (B, 2.73; SE, 1.19).ConclusionsClinicians and researchers should consider the effects of ESLD on caregivers as well as their patients to optimize the QOL for both.
| S-EPMC7554075 | biostudies-literature
Project description:IntroductionAs the population ages, governments worldwide have begun seeking ways to support informal caregiving. In this light, Canada is no exception, but despite the centrality of the informal care strategy in elder care, we know little about the intertwining and overlapping policies that have been implemented to support informal caregivers providing assistance to the elderly, and to fellow citizens with disabilities. This review aims to identify the diversity of Canadian national, provincial and territorial policies supporting informal caregivers. It seeks, from its generalist focus on all informal care, to draw out specific observations and lessons for the elder care policy environment.Methods and analysisGiven the vast and multidisciplinary nature of the literature on informal care policy, as well as the paucity of existing knowledge syntheses, we will adopt a scoping review methodology. We will follow the framework developed by Arksey and O'Malley that entails six stages, including: (1) identifying the research question(s); (2) searching for relevant studies; (3) selecting studies; (4) charting the data; (5) collating, summarising and reporting the results; (6) and conducting consultation exercises. We will conduct these stages iteratively and reflexively, making adjustments and repetitions when appropriate to ensure we have covered the literature as comprehensively as possible. We will pursue an iterative integrated knowledge translation (iKT) strategy engaging our knowledge users through all stages of the review.Ethics and disseminationBy adopting an iKT strategy we will ensure our knowledge users directly contribute to the project's policy relevant publications. Upon completion of the review, we will present the findings at academic conferences, publishing a research report, along with an academic peer-reviewed article. Our intent is to develop an online, free-access evidence repository that catalogues the full range of Canada's English language informal care support policies. Finally, the completed review will allow us to publish a series of policy briefs in collaboration with knowledge users illustrating how to promote and better implement informal care support policies. Our study has received ethics approval from the University of Calgary Conjoint Ethics Board.
| S-EPMC6042573 | biostudies-literature
Project description:BackgroundMore people are dying at home with dementia and Alzheimer's disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services.AimTo explore informal caregivers' views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life.DesignA qualitative interview study. Data were analysed using thematic analysis.Setting/participantsTwenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life.ResultsSpecialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy.ConclusionsEnd-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained.
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