BackgroundEnd-of-life care (EoLC) is an experience that touches the lives of everyone. Dying in an acute hospital is a common occurrence in developed countries across the world. Previous studies have shown that there is wide variation in EoLC and at times is experienced as being of poor quality. Assessing and measuring the quality of care provided is a key component of all healthcare systems. This paper reports on the qualitative analysis of open-ended free text questions that were asked as part of a post-bereavement survey conducted in two adult acute hospitals in Ireland.MethodsThis was a quantitative descriptive post-bereavement postal survey, gathering data retrospectively from relatives or friends of patients who died, utilising an adapted version of the VOICES (Views of Informal Carers - Evaluation of Services) questionnaire. VOICES MaJam has 29 core questions, seven questions requesting personal demographic information and four open-ended questions gathering descriptive data about the care experience during the patient’s last admission to hospital. A total of 356 valid questionnaires were returned. Qualitative data were managed, coded and analysed with NVivo 10, using a template analysis framework approach.ResultsThree quarters (75%: n = 268) responded to at least one of the open-ended questions. Several key themes emerged, indicating areas that require particular attention in EoLC. Two themes relate to how care needs are met and how the hospital environment has a critical influence on EoLC experiences. The remaining three themes relate more to the interpersonal context including whether patients are treated with dignity and respect, the psychological, emotional and spiritual needs of patients and their family members and communication.ConclusionsAcute hospitals need to ensure that patients and their relatives receive high quality EoLC. Seeking the views of bereaved relatives should be considered by all hospitals and healthcare settings to ascertain the quality of care at end of life. This study contributes to our understanding and knowledge of what good EoLC looks like and where care can be improved, thus enabling hospitals to direct and inform quality improvement.

BackgroundInternationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals.MethodsRelatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate).ResultsThe majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support.ConclusionsThis research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative’s priorities for EoLC in acute hospitals and can advance care providers’, policy makers’ and educationalists’ priorities for service improvement.

BackgroundThe United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) establishes a right to legal capacity for all people, including those with support needs. People with disabilities have a legal right to be given the appropriate supports to make informed decisions in all aspects of their lives, including health. In Ireland, the Assisted Decision-Making (Capacity) Act (2015) ratifies the Convention and has established a legal framework for Assisted Decision Making (ADM). The main provisions of the Act are not yet implemented. Codes of Practice to guide health and social care professionals are currently being developed. Internationally, concerns are expressed that ADM implementation is poorly understood. Using realist synthesis, this study aims to identify Programme Theory (PT) that will inform ADM implementation in healthcare.MethodsA Rapid Realist Review using collaborative methods was chosen to appraise relevant literature and engage knowledge users from Irish health and social care. The review was led by an expert panel of relevant stakeholders that developed the research question which asks, ‘what mechanisms enable healthcare professionals to adopt ADM into practice?’To ensure the PT was inclusive of local contextual influences, five reference panels were conducted with healthcare professionals, family carers and people with dementia. PT was refined and tested iteratively through knowledge synthesis informed by forty-seven primary studies, reference panel discussions and expert panel refinement and consensus.ResultsThe review has developed an explanatory PT on ADM implementation in healthcare practice. The review identified four implementation domains as significant. These are Personalisation of Health & ADM Service Provision, Culture & Leadership, Environmental & Social Re-structuring and Education, Training & Enablement. Each domain is presented as an explanatory PT statement using realist convention that identifies context, mechanism and outcome configurations.ConclusionsThis realist review makes a unique contribution to this field. The PT can be applied by policymakers to inform intervention development and implementation strategy. It informs the imminent policy and practice developments in Ireland and has relevance for other worldwide healthcare systems dealing with similar legislative changes in line with UNCRPD.

In recent years, there have been national and international policy advances around capacity and decision-making and an apparent burgeoning rights-based approach to the issue, all of which have the potential to impact on the experience for people with dementia in Ireland. There is little evidence however on whether these policies and principles are being translated into practice and whether traditional paternalistic approaches to decision-making are being challenged. To gain insight into current practice, research was undertaken with social workers working with older people in Ireland; reporting on the involvement of people living with dementia in care-planning processes. Data collection included a mixed method approach; an on-line survey of social workers from across the country who reported on their open caseload during the month of June 2015 (N = 38 social workers reporting on the experiences of 788 older people, of which 39% of older people had a formal diagnosis of dementia). In addition, semi-structured telephone interviews were conducted with social workers working in the nine Community Health Organisation areas (N = 21). Findings show that people with dementia were high users of social work services, accounting for 44.5% of the client group. Social workers reported that there were no standardised approaches to how Health and Social Care Professionals involved people with dementia in care planning and decision-making. Overall, people with dementia were more likely to be excluded from decision-making processes due to (i) assumptions that they lacked capacity, (ii) family members preferences that the person was not involved, (iii) communication difficulties, (iv) time constraints, (v) little or no opportunity given or (vi) the person delegated decision-making to others. Good practices were identified through multidisciplinary team approaches and formal care planning meetings. This research highlights variability in how people with dementia participate in decision-making around their care. It sheds light on existing barriers which challenge the full implementation of the Irish Assisted Decision-Making legislation; highlighting the need for appropriate guidance and education for Health and Social Care Professionals. The findings also show that family dynamics and existing relationships can play a role in how people with dementia participate and are involved. To ensure consistent opportunities for participation, effective practices and approaches to supporting the participation of people living with dementia in care planning needs to be developed and rolled out in all care settings through increased training and adoption of standardised approaches.

Background: The University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional practice and administration. During a PPI knowledge sharing event challenges were noted during the pre-commencement stage of research projects. This stage includes the time before a research projects/partnership starts or when funding is being applied for. As a response, we agreed there was a need to spend time developing a values-based approach to be used from the pre-commencement of PPI projects and partnerships. Values are deeply held ideals that people consider to be important. They are vital in shaping our attitudes and motivating our choices and behaviours. Methods: Using independent facilitators, we invited a diverse group of participants to a full-day workshop in February. During the workshop, the concept of a values statement and values-based approaches was introduced. The group via a majority consensus, agreed on a core set of values and a shared understanding of them. After the workshop, a draft was shared with participants for further comment and final agreement. Results: The workshop had 22 people representing experts by experience, PPI charity partners, funders, academics and national PPI Ignite partners. The group via consensus identified four values of respect, openness, reciprocity and flexibility for the pre-commencement stage. A frequently reported experience of PPI partners was that some felt that the pre-commencement activities appeared at times like a performance; an act that had to be completed in order to move to the next stage rather than a genuine interest in a mutually beneficial partnership. Being open and transparent with all invovled that the funding application may not be successful was stressed. Another important feature related to 'openness' was the 'spaces' and 'places' in which meetings between partners could occur in an accessible and equitable way. The issue of 'space' is particularly critical for the involvement of seldom heard groups. The benefits of

Care planning meetings (sometimes referred to as family meetings) for older patients involve group decision making between the multidisciplinary team, the older person and their family. However, service user participation is challenged by the inequity of knowledge and power between participants, together with organisational and resource pressures for timely discharge. The effective use and perhaps, potential misuse of communication strategies within care planning meetings is of ethical concern to all participants. Habermas's essential critique of participatory communication provides insight as to how older people's involvement can be either enabled or blocked by healthcare professionals depending on their use of communication strategies. (Habermas 1984). Seven discipline specific mini-focus groups provided an opportunity for healthcare professionals to reflect on the participation of patients over 65 and their families in care planning meetings. Findings explore healthcare professional's understanding of older patients involvement based on key dimensions of communicative participation, namely, mutuality, inclusiveness, patient centeredness and clear outcomes (Walker et al 2001). Whilst the benefits of collaborative decision making were confirmed, legitimate concerns as to the quality of participatory practices, limited attention to group work processes and the exclusion of older patients with cognitive impairment, were identified.

In this commentary, we will explore the work of social work in Ireland in addressing the impact of the coronavirus 2019 (COVID-19) crisis on older people in general, and older people who have an enduring mental illness.

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