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BACKGROUND: A collaborative approach is critical in inclusive research and should incorporate taking time to build relationships with co-researchers based on trust and shared understanding. Involvement can often be seen as tokenistic and in order to avoid this, it is important to provide opportunities for people to exercise choice throughout the research process. MAIN BODY: The current paper outlines learnings from a co-researcher training process for young people with disabilities to identify the ways in which meaningful choice can be facilitated with this group. While conducting training of co-researchers in topics such as research methods, we were continuously led by the group with regards to the directions that the sessions took and promoted problem solving with the group to accommodate the unique needs of all members. The overall aim of a wider project was to develop research capacity in a group of young people with disabilities through co-researcher training and this paper will report on learnings from this work with regards to how we sought to provide opportunities for the co-researchers to exercise choice within research projects. Feedback from the group of young people highlighted the variety of needs and expectations that must be accommodated in such a process and therefore, allowing them to dictate the extent and manner of their engagement is key. Young people with disabilities are a heterogeneous group and therefore, some methodologies and ways of working required adaptation in order to facilitate meaningful choice and engagement for all. CONCLUSION: Providing meaningful opportunities for demonstrating their choices, in relation to elements of research projects, is a critical component of facilitating a rights-based approach when conducting co-research and requires researchers to cede some level of control over the research process to co-researchers. This can be difficult to achieve in practice and researchers must continuously reflect on their own practice and be willing to change and adapt throughout the process.
It is very important that all members of society can be part of research teams so that researchers can develop projects that will provide good outcomes, however, not all people with disabilities have opportunities to take part in research projects. This project supported a group of young people with disabilities to develop research skills through a set of workshops and this paper describes what the researchers learned from these workshops. This paper will help researchers to understand how best to capture the voices of this population for future research. Young people with disabilities are all different and must be supported to give their opinion in the way that suits them best. Researchers must always think about the ways that they work and change how they work if it is not good for supporting young people with disabilities to work with them on research projects.
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INTRODUCTION: Supported (assisted) healthcare decision-making (ADM) focuses attention on how people with disabilities, including cognitive impairments, can be best supported to make decisions about their health and social care on an equitable basis with others. Meaningful implementation of legal frameworks for ADM challenges long-held presumptions about who has access to valued decision-making resources, influence and power within a particular socio-cultural setting. This study aims to explore the relational power dynamics around ADM with older people in acute care settings. METHODS: This study adopts a critical hermeneutic approach to qualitatively explore the lived experience of ADM from the perspectives of Health and Social Care Professionals (N = 26). This is supported by an exploration of the experiences of older people (N = 4), older people with a diagnosis of dementia (N = 4) and family carers (N = 5). RESULTS: We present three themes of data analysis that represent three spaces where the relational aspects of power in ADM are manifested. The first space, centralising decision-making power within multidisciplinary teams identified the privileging of physicians in traditional hierarchical leadership models that may lead to the implicit exclusion of family carers and some Health and Social Care Professionals in the ADM process. Privileging cognitive and communication competence identified a tendency to attribute decision-making autonomy to those with cognitive and communication competency. The final space, balancing the duty of care and individual autonomy, recognises acute care settings as typically risk-averse cultures that limit autonomy for decisions that carry risk, especially for those with cognitive impairment. CONCLUSION: Findings indicate the need to address cultural sources of power operating through social norms premised on ageist and ableist ideologies. It is necessary to challenge institutional barriers to meaningful ADM including positional power that is associated with hierarchies of influence and protectionism. Finally, meaningful ADM requires resistance to the disempowerment created by structural, economic and social circumstances which limit choices for decision-making. PATIENT OR PUBLIC CONTRIBUTION: A public and patient involvement panel of older people were consulted in the development of the grant application (HRB: APA-2016-1878). Representatives from Alzheimer's Society Ireland and Family Carers Ireland were steering committee members guiding design and strategy.
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Personas con Discapacidad , Humanos , Anciano , Instituciones de Salud , Cuidadores , Atención a la Salud , Irlanda , Toma de DecisionesRESUMEN
Formal assessments of cognition that rely on language may conceal the non-linguistic cognitive function of people with aphasia. This may have detrimental consequences for how people with aphasia are supported to reveal communicative and decision-making competence. This case report demonstrates a multidisciplinary team approach to supporting the health and social care decision-making of people with aphasia. The case is a 67-year-old woman with Wernicke's type aphasia. As the issue of long-term care arose, the speech and language therapist used a supported communication approach with the patient who expressed her wish to go home. A multidisciplinary team functional assessment of capacity was undertaken which involved functional assessments and observations of everyday tasks by allied health, nursing, catering and medical staff. In this way, the patient's decision-making capacity was revealed and she was discharged home. A collaborative multidisciplinary team approach using supported communication and functional capacity assessments may be essential for scaffolding the decision-making capacity of people with aphasia.
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In recent years, there has been a move toward a more human rights-based approach to the issue of supported and assisted decision-making (ADM) with legislative changes strengthening the formal right for older people to participate in care planning and decision-making. Ireland's Assisted Decision-Making (Capacity) Act, 2015 breaks from traditional views of capacity to consider the uniqueness of each decision in relation to topic, time and place for those with impaired or fluctuating capacity. This study set out to explore experiences of assisted decision making (ADM) in acute care hospitals in Ireland and to identify the barriers and enablers to ADM for older people and people with dementia from the perspective of different Health and Social Care Professionals (HSCPs) involved in their care. We carried out 26 semi-structured audio-recorded interviews with a convenience sample of HSCPs working in two acute hospitals and subsequently confirmed the results. HSCPs identified several barriers to, and enablers of, ADM in acute hospitals that were categorized into three key themes: Building meaningful engagement with older people and their family carers; barriers and enablers associated with interprofessional collaboration and barriers and enablers associated with the environment. Our findings suggest that despite concrete policy and legislative underpinnings to ADM, this was not always evident in practice and suggests the need for specialized education and training on ADM in practice settings.