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

Author(s):  
Éidín Ní Shé ◽  
Deirdre O’Donnell ◽  
Sarah Donnelly ◽  
Carmel Davies ◽  
Francesco Fattori ◽  
...  

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.

2021 ◽  
Author(s):  
Deirdre O'Donnell ◽  
Carmel Davies ◽  
Lauren Christophers ◽  
Éidín Ní Shé ◽  
Sarah Donnelly ◽  
...  

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.


2020 ◽  
Vol 49 (6) ◽  
pp. 901-906 ◽  
Author(s):  
Sarah J Richardson ◽  
Camille B Carroll ◽  
Jacqueline Close ◽  
Adam L Gordon ◽  
John O’Brien ◽  
...  

Abstract Older people are disproportionately affected by the COVID-19 pandemic, which has had a profound impact on research as well as clinical service delivery. This commentary identifies key challenges and opportunities in continuing to conduct research with and for older people, both during and after the current pandemic. It shares opinions from responders to an international survey, a range of academic authors and opinions from specialist societies. Priorities in COVID-19 research include its specific presentation in older people, consequences for physical, cognitive and psychological health, treatments and vaccines, rehabilitation, supporting care homes more effectively, the impact of social distancing, lockdown policies and system reconfiguration to provide best health and social care for older people. COVID-19 research needs to be inclusive, particularly involving older people living with frailty, cognitive impairment or multimorbidity, and those living in care homes. Non-COVID-19 related research for older people remains of critical importance and must not be neglected in the rush to study the pandemic. Profound changes are required in the way that we design and deliver research for older people in a world where movement and face-to-face contact are restricted, but we also highlight new opportunities such as the ability to collaborate more widely and to design and deliver research efficiently at scale and speed.


2018 ◽  
Vol 18 (1) ◽  
Author(s):  
Frances Bunn ◽  
Claire Goodman ◽  
Bridget Russell ◽  
Patricia Wilson ◽  
Jill Manthorpe ◽  
...  

2018 ◽  
Vol 6 (28) ◽  
pp. 1-84
Author(s):  
Frances Bunn ◽  
Claire Goodman ◽  
Bridget Russell ◽  
Patricia Wilson ◽  
Jill Manthorpe ◽  
...  

BackgroundHealth-care systems are increasingly moving towards more integrated approaches. Shared decision-making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; this is particularly the case for older people with complex needs.ObjectivesTo provide a context-relevant understanding of how models to facilitate SDM might work for older people with multiple health and care needs and how they might be applied to integrated care models.DesignRealist synthesis following Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) publication standards.ParticipantsTwenty-four stakeholders took part in interviews.Data sourcesElectronic databases including MEDLINE (via PubMed), The Cochrane Library, Scopus, Google and Google Scholar (Google Inc., Mountain View, CA, USA). Lateral searches were also carried out. All types of evidence were included.Review methodsIterative stakeholder-driven, three-stage approach, involving (1) scoping of the literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, (2) systematic searches for evidence to test and develop the theories and (3) validation of programme theory/ies with stakeholders (n = 11).ResultsWe included 88 papers, of which 29 focused on older people or people with complex needs. We identified four theories (context–mechanism–outcome configurations) that together provide an account of what needs to be in place for SDM to work for older people with complex needs: understanding and assessing patient and carer values and capacity to access and use care; organising systems to support and prioritise SDM; supporting and preparing patients and family carers to engage in SDM; and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that create trust between those involved, allow service users to feel that they are respected and understood, and engender confidence to engage in SDM.LimitationsThere is a lack of evidence on interventions to promote SDM in older people with complex needs or on interprofessional approaches to SDM.ConclusionsModels of SDM for older people with complex health and care needs should be conceptualised as a series of conversations that patients, and their family carers, may have with a variety of different health and care professionals. To embed SDM in practice requires a shift from a biomedical focus to a more person-centred ethos. Service providers are likely to need support, both in terms of the way services are organised and delivered and in terms of their own continuing professional development. Older people with complex needs may need support to engage in SDM. How this support is best provided needs further exploration, although face-to-face interactions and ongoing patient–professional relationships are key.Future workThere is a need for further work to establish how organisational structures can be better aligned to meet the requirements of older people with complex needs. This includes a need to define and evaluate the contribution that different members of health and care teams can make to SDM for older people with complex health and care needs.Study registrationThis study is registered as PROSPERO CRD42016039013.FundingThe National Institute for Health Research Health Services and Delivery Research programme.


Dementia ◽  
2016 ◽  
Vol 18 (4) ◽  
pp. 1219-1236 ◽  
Author(s):  
Deirdre Fetherstonhaugh ◽  
Jo-Anne Rayner ◽  
Laura Tarzia

In Australia, the majority of people with dementia live in the community with informal care provided by family, commonly a spouse. A diagnosis of dementia is a threat to one’s personhood and is often accompanied by perceptions of future dependency, which will involve the inability to carry out conventional roles and complete everyday tasks including making decisions. Being able to make decisions, however, is part of being a ‘person’ and it is through relationships that personhood is defined and constructed. In face-to-face interviews with seven couples (a carer and person with dementia dyad) and two spouse carers, this study explored why, and how, spouse carers support continued involvement in decision-making for people with dementia. The findings highlight the importance of loving and respectful relationships in the development of strategies to support continued decision-making for people with dementia.


2018 ◽  
Vol 47 (suppl_5) ◽  
pp. v13-v60
Author(s):  
Deirdre O Donnell ◽  
Éidín Ní Shé ◽  
Carmel Davies ◽  
Francesco Fattori ◽  
Sarah Donnelly ◽  
...  

2015 ◽  
Vol 16 (2) ◽  
pp. 94-105 ◽  
Author(s):  
Alice K. Stevens ◽  
Helen Raphael ◽  
Sue M. Green

Purpose – Residential care for older people in the UK includes care homes with and without 24-hour Registered Nurse (RN) care. Reduced autonomy and personal wealth can result when people assessed as having minimal care needs, enter and reside in care homes with RN care. The purpose of this paper is to explore the experiences of older people with minimal care needs admission to care homes with RN care. Design/methodology/approach – A qualitative study using a grounded theory method was undertaken. In total, 12 care home with RN care residents assessed as not requiring nursing care were interviewed. Initial sampling was purposive and progressed to theoretical. Interviews were analysed using the grounded theory analysis method of constant comparison and theory development. Findings – Two main categories emerged: “choosing the path”, which concerned the decision to enter the home, and “settling in”, which related to adaptation to the environment. Findings suggested participants who perceived they had greater control over the decision-making process found it easier to settle in the care home. The two categories linked to form an emerging framework of “crossing the bridge” from independent living to care home resident. Research limitations/implications – The findings contribute to the understanding of factors influencing admission of older people with minimal care needs to care homes with RN care and highlight the importance of informed decision making. Practical implications – Health and social care professionals must give informed support and advice to older people seeking care options to ensure their needs are best met. Originality/value – This study enabled older people with minimal care needs admission to care homes with RN care to voice their experiences.


Author(s):  
Pritti Aggarwal ◽  
Stephen Woolford ◽  
Harnish Patel

Multi-morbidity and polypharmacy are common in older people and pose a challenge for health and social care systems especially in context of global population ageing. They are complex and interrelated concepts in the care of older people that require early detection and patient centred decision making that are underpinned by the principles of multidisciplinary led comprehensive geriatric assessment (CGA). Personalised care plans need to remain responsive and adaptable to the needs of a patient, enabling an individual to maintain their independence.


2016 ◽  
Vol 4 (8) ◽  
pp. 1-156 ◽  
Author(s):  
Frances Bunn ◽  
Anne-Marie Burn ◽  
Claire Goodman ◽  
Louise Robinson ◽  
Greta Rait ◽  
...  

BackgroundAmong people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population.ObjectivesTo explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population.DesignWe undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care.ParticipantsThe study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care.ResultsThe scoping review (n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found examples of good practice, these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD.ConclusionsSignificant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity.FundingThe National Institute for Health Research Health Services and Delivery Research programme.


2018 ◽  
Vol 31 (5) ◽  
pp. 627-642 ◽  
Author(s):  
Alessandro Bosco ◽  
Justine Schneider ◽  
Donna Maria Coleston-Shields ◽  
Kaanthan Jawahar ◽  
Paul Higgs ◽  
...  

ABSTRACTObjectives:Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.Design:A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices.Results:The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia.Conclusions:Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.


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