scholarly journals Experiences of people with memory disorders and their spouse carers on influencing formal care: “They ask my wife questions that they should ask me”

Dementia ◽  
2021 ◽  
pp. 147130122199430
Author(s):  
Mari S Aaltonen ◽  
Anne Martin-Matthews ◽  
Jutta M Pulkki ◽  
Päivi Eskola ◽  
Outi H Jolanki
Keyword(s):  
Decision Making ◽  
Social Care ◽  
Cognitive Capacity ◽  
Memory Disorders ◽  
Formal Care ◽  
Structural Factors ◽  
Care Providers ◽  
Family Carers ◽  
Health And Social Care ◽  
With Memory

Background People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers. Methods Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders. Findings Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers’ decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited. Conclusions People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.

scholarly journals 6 The Intersection of Human Rights and Decision Making Capacity Legislation with Person Centred Approaches

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii1-iii16
Author(s):  
Amanda Phelan ◽  
Patricia Rickard Clarke
Keyword(s):  
Decision Making ◽  
Human Rights ◽  
United Kingdom ◽  
Social Care ◽  
Self Determination ◽  
Cognitive Capacity ◽  
Risky Decision ◽  
Support Person ◽  
Decision Making Capacity ◽  
Health And Social Care

Abstract Background A major focus on decision making capacity (as opposed to cognitive capacity and competence) legislation in many Western countries is the integration of a human rights approach focused on self-determination and autonomy. This paper examines modern day concepts of personhood and person centred care and presents Irish and United Kingdom legal commentaries which focus on health services’ and society's approaches to risky decision making. Integrating human rights into decision making capacity legislation has been central in contemporary discourses on health and welfare. Methods A literature review was undertaken charting the emergence of personhood, person centred care and human rights. Case studies of influential legal commentaries in Ireland and the United Kingdom where decision-making capacity was addressed were mapped to person centred care principles. Results Findings point to a convergence of discourses of human rights in contemporary approaches to health and social care as well as the evolution of legislation to support person centredness in fostering safeguarding and promoting autonomy and self-determination. Specific legal commentaries point to the need of health and social care to be mindful of paternalism and to conceptualise the concept of ‘risk’ with a particular emphasis on the inclusion and defence of the voice of the older or vulnerable person. Conclusion The intrinsic worth of each human is articulated through an implicit and explicit vindication of their human rights. The emergence of the third generation of human rights has argued the value of self-determination and autonomy, articulated through robust national legislation on decision-making capacity based on the core principles of person centred care approaches. This move from paternalism is imperative and is imbued in contemporary legislation and legal commentaries, which has noted the need for revisions in health and social care case management perspectives.

scholarly journals What older adults and their caregivers need for making better health-related decisions at home: a participatory mixed methods protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e039102
Author(s):  
Claudia Lai ◽  
Paul Holyoke ◽  
Karine V Plourde ◽  
Simon Décary ◽  
France Légaré
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
Decision Support ◽  
Mixed Methods ◽  
Home Care ◽  
Social Care ◽  
Phase 1 ◽  
Care Providers ◽  
Health And Social Care ◽  
Health Related

IntroductionShared decision making is an interpersonal process whereby healthcare providers collaborate with and support patients in decision-making. Older adults receiving home care need support with decision-making. We will explore what older adults receiving home care and their caregivers need for making better health-related decisions.Methods and analysisThis two-phase sequential exploratory mixed methods study will be conducted in a pan-Canadian healthcare organisation, SE Health. First, we will create a participant advisory group to advise us throughout the research process. In phase 1 (qualitative), we will recruit a convenience sample of 15–30 older adults and caregivers receiving home care to participate in open-ended semi-structured interviews. Phase 1 participants will be invited to share what health-related decisions they face at home and what they need for making better decisions. In phase 2 (quantitative), interdisciplinary health and social care providers will be invited to answer a web-based survey to share their views on the decisional needs of older adults and their caregivers. The survey will include questions informed by findings from qualitative interviews in phase 1, and a workbook for assessing decisional needs based on the Ottawa Decision Support Framework. Finally, qualitative and quantitative results will be triangulated (by methods, investigator, theory and source) to develop a comprehensive understanding of decision-making needs from the perspective of older adults, caregivers and health and social care providers. We will use the quality of mixed methods studies in health services research guidelines and the Checklist for Reporting the Results of Internet E-Surveys checklist.Ethics and disseminationEthics approval was obtained from the research ethics boards at Southlake Regional Health Centre and Université Laval. This study will inform the design of decision support interventions. Further dissemination plans include summary briefs for study participants, tailored reports for home care decision makers and policy makers, and peer-reviewed publications.Trial registration numberNCT04327830.

scholarly journals Contexts and Mechanisms That May Facilitate or Inhibit the Implementation of Assisted Decision-Making Policy With Older People in Acute Care Settings: A Qualitative Analysis of the Experiences of Health and Social Care Professionals, Older People and Family Carers.

2021 ◽  
Author(s):  
Deirdre O'Donnell ◽  
Carmel Davies ◽  
Lauren Christophers ◽  
Éidín Ní Shé ◽  
Sarah Donnelly ◽  
...  
Keyword(s):  
Decision Making ◽  
Older People ◽  
Social Care ◽  
Healthcare Services ◽  
Steering Committee ◽  
Risk Tolerance ◽  
Family Carers ◽  
Grant Application ◽  
Programme Theory ◽  
Health And Social Care

Abstract Background: Assisted Decision-Making (ADM) legislation in Ireland provides a statutory basis for the right of all individuals, including those with a disability, to be supported to participate as fully as possible in all decisions which affect their lives. ADM with older people who have impaired cognition may prove challenging for acute healthcare services. Methods: A qualitative exploration of the experiences of health and social care professionals, older people with and without a diagnosis of dementia and their family carers (N=39) was conducted. A realist programme theory described by Davies et al.(2019) provided an initial coding framework which was adapted through inductive coding of the accounts. Results: Personalisation was established as the core theme, supported by four additional themes reflecting implementation domains: Environment and Resources, Social Restructuring, Education, Training and Enablement and Culture and Leadership.Conclusions: A restructuring of the social and physical infrastructure of acute settings was found to be necessary to maximise insight, ascertain preferences and assist the decision-making of older people. A cultural climate which fosters personalisation is required alongside the cultivation of risk tolerance, collective leadership and inter-professional collaboration. The adapted programme theory described in this article informs policy and practice planning in Ireland. It also contributes to wider debates internationally on the role of socio-cultural and political contexts for ADM implementation.Patient or Public Contribution: A panel of public representatives of older people were consulted in the development of the grant application. A representative from Alzheimer’s Society Ireland and Family Carers Ireland were project steering committee members guiding design and strategy.

scholarly journals The Role of Information and Communication Technology (ICT) for Older Adults’ Decision-Making Related to Health, and Health and Social Care Services in Daily Life—A Scoping Review

2021 ◽  
Vol 19 (1) ◽  
pp. 151
Author(s):  
Susanna Nordin ◽  
Jodi Sturge ◽  
Maria Ayoub ◽  
Allyson Jones ◽  
Kevin McKee ◽  
...  
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
Information And Communication Technology ◽  
Communication Technology ◽  
Scoping Review ◽  
Social Care ◽  
Care Services ◽  
Health And Social Care ◽  
Information And Communication

Information and communication technology (ICT) can potentially support older adults in making decisions and increase their involvement in decision-making processes. Although the range of technical products has expanded in various areas of society, knowledge is lacking on the influence that ICT has on older adults’ decision-making in everyday situations. Based on the literature, we aimed to provide an overview of the role of ICT in home-dwelling older adults’ decision-making in relation to health, and health and social care services. A scoping review of articles published between 2010 and 2020 was undertaken by searching five electronic databases. Finally, 12 articles using qualitative, quantitative, and mixed-method designs were included. The articles were published in journals representing biology and medicine, nursing, informatics, and computer science. A majority of the articles were published in the last five years, and most articles came from European countries. The results are presented in three categories: (i) form and function of ICT for decision-making, (ii) perceived value and effect of ICT for decision-making, and (iii) factors influencing ICT use for decision-making. According to our findings, ICT for decision-making in relation to health, and health and social care services was more implicitly described than explicitly described, and we conclude that more research on this topic is needed. Future research should engage older adults and health professionals in developing technology based on their needs. Further, factors that influence older adults’ use of ICT should be evaluated to ensure that it is successfully integrated into their daily lives.

scholarly journals Exploring the role of the Care and Health Information Exchange (CHIE) in clinical decision-making: a realist evaluation

2020 ◽  
Author(s):  
Philip Scott ◽  
Elisavet Andrikopoulou ◽  
Haythem Nakkas ◽  
Paul Roderick
Keyword(s):  
Decision Making ◽  
Health Information ◽  
Information Exchange ◽  
Healthcare Professionals ◽  
Clinical Decision Making ◽  
Social Care ◽  
Health Information Exchange ◽  
Clinical Decision ◽  
Health And Social Care ◽  
The Impact

Background: The overall evidence for the impact of electronic information systems on cost, quality and safety of healthcare remains contested. Whilst it seems intuitively obvious that having more data about a patient will improve care, the mechanisms by which information availability is translated into better decision-making are not well understood. Furthermore, there is the risk of data overload creating a negative outcome. There are situations where a key information summary can be more useful than a rich record. The Care and Health Information Exchange (CHIE) is a shared electronic health record for Hampshire and the Isle of Wight that combines key information from hospital, general practice, community care and social services. Its purpose is to provide clinical and care professionals with complete, accurate and up-to-date information when caring for patients. CHIE is used by GP out-of-hours services, acute hospital doctors, ambulance service, GPs and others in caring for patients. Research questions: The fundamental question was How does awareness of CHIE or usage of CHIE affect clinical decision-making? The secondary questions were What are the latent benefits of CHIE in frontline NHS operations? and What is the potential of CHIE to have an impact on major NHS cost pressures? The NHS funders decided to focus on acute medical inpatient admissions as the initial scope, given the high costs associated with hospital stays and the patient complexities (and therefore information requirements) often associated with unscheduled admissions. Methods: Semi-structured interviews with healthcare professionals to explore their experience about the utility of CHIE in their clinical scenario, whether and how it has affected their decision-making practices and the barriers and facilitators for their use of CHIE. The Framework Method was used for qualitative analysis, supported by the software tool Atlas.ti. Results: 21 healthcare professionals were interviewed. Three main functions were identified as useful: extensive medication prescribing history, information sharing between primary, secondary and social care and access to laboratory test results. We inferred two positive cognitive mechanisms: knowledge confidence and collaboration assurance, and three negative ones: consent anxiety, search anxiety and data mistrust. Conclusions: CHIE gives clinicians the bigger picture to understand the patient's health and social care history and circumstances so as to make confident and informed decisions. CHIE is very beneficial for medicines reconciliation on admission, especially for patients that are unable to speak or act for themselves or who cannot remember their precise medication or allergies. We found no clear evidence that CHIE has a significant impact on admission or discharge decisions. We propose the use of recommender systems to help clinicians navigate such large volumes of patient data, which will only grow as additional data is collected.

scholarly journals “What Bothers Me Most Is the Disparity between the Choices that People Have or Don’t Have”: A Qualitative Study on the Health Systems Responsiveness to Implementing the Assisted Decision-Making (Capacity) Act in Ireland

2020 ◽  
Vol 17 (9) ◽  
pp. 3294 ◽  
Author(s):  
Éidín Ní Shé ◽  
Deirdre O’Donnell ◽  
Sarah Donnelly ◽  
Carmel Davies ◽  
Francesco Fattori ◽  
...  
Keyword(s):  
Decision Making ◽  
Older People ◽  
Healthcare System ◽  
Health Systems ◽  
Critical Incident ◽  
Family Carers ◽  
Acute Setting ◽  
Face To Face ◽  
Health And Social Care ◽  
Diagnosis Of Dementia

Objective: The Assisted Decision-Making (ADM) (Capacity) Act was enacted in 2015 in Ireland and will be commenced in 2021. This paper is focused on this pre-implementation stage within the acute setting and uses a health systems responsiveness framework. Methods: We conducted face-to-face interviews using a critical incident technique. We interviewed older people including those with a diagnosis of dementia (n = 8), family carers (n = 5) and health and social care professionals (HSCPs) working in the acute setting (n = 26). Results: The interviewees reflected upon a healthcare system that is currently under significant pressures. HSCPs are doing their best, but they are often halted from delivering on the will and preference of their patients. Many older people and family carers feel that they must be very assertive to have their preferences considered. All expressed concern about the strain on the healthcare system. There are significant environmental barriers that are hindering ADM practice. Conclusions: The commencement of ADM provides an opportunity to redefine the provision, practices, and priorities of healthcare in Ireland to enable improved patient-centred care. To facilitate implementation of ADM, it is therefore critical to identify and provide adequate resources and work towards solutions to ensure a seamless commencement of the legislation.

scholarly journals The barriers and facilitators to implementing dementia education and training in health and social care services: a mixed-methods study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Claire A. Surr ◽  
Sahdia Parveen ◽  
Sarah J. Smith ◽  
Michelle Drury ◽  
Cara Sass ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Behaviour Change ◽  
Social Care ◽  
Education And Training ◽  
Barriers And Facilitators ◽  
Care Providers ◽  
Care Services ◽  
Health And Social Care ◽  
And Training ◽  
Dementia Education

Abstract Background The health and social care workforce requires access to appropriate education and training to provide quality care for people with dementia. Success of a training programme depends on staff ability to put their learning into practice through behaviour change. This study aimed to investigate the barriers and facilitators to implementation of dementia education and training in health and social care services using the Theoretical Domains Framework (TDF) and COM-B model of behaviour change. Methods A mixed-methods design. Participants were dementia training leads, training facilitators, managers and staff who had attended training who worked in UK care homes, acute hospitals, mental health services and primary care settings. Methods were an online audit of care and training providers, online survey of trained staff and individual/group interviews with organisational training leads, training facilitators, staff who had attended dementia training and managers. Data were analysed using descriptive statistics and thematic template analysis. Results Barriers and facilitators were analysed according the COM-B domains. “Capability” factors were not perceived as a significant barrier to training implementation. Factors which supported staff capability included the use of interactive face-to-face training, and training that was relevant to their role. Factors that increased staff “motivation” included skilled facilitation of training, trainees’ desire to learn and the provision of incentives (e.g. attendance during paid working hours, badges/certifications). “Opportunity” factors were most prevalent with lack of resources (time, financial, staffing and environmental) being the biggest perceived barrier to training implementation. The presence or not of external support from families and internal factors such as the organisational culture and its supportiveness of good dementia care and training implementation were also influential. Conclusions A wide range of factors may present as barriers to or facilitators of dementia training implementation and behaviour change for staff. These should be considered by health and social care providers in the context of dementia training design and delivery in order to maximise potential for implementation.

scholarly journals End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care

2017 ◽  
Vol 32 (1) ◽  
pp. 36-45 ◽  
Author(s):  
Caroline Shulman ◽  
Briony F Hudson ◽  
Joseph Low ◽  
Nigel Hewett ◽  
Julian Daley ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Service Use ◽  
Social Care ◽  
Care Service ◽  
Homeless People ◽  
Palliative Care Service ◽  
Care Providers ◽  
Health And Social Care ◽  
Formerly Homeless

Background: Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. Aim: To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Design: Thematic analysis of data collected using focus groups and interviews. Participants: Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). Results: This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. Conclusion: Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.

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