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Exploring subjective experiences of people living with dementia through qualitative research has become increasingly common in recent decades. Nonetheless, researchers have shared a number of ethical challenges in involving people living with dementia in research. A concept that has been influential in discussions about ethics within the field of dementia care, in particular, is person-centredness. A person-centred approach reflects values of respect for personhood and the rights of a person and of building mutual trust and understanding. This chapter presents my experience of adopting person-centred ethical practices in a sensory ethnographic study involving older adults living with dementia. I highlight person-centred ethical considerations at the design stage of my study and occasions during the conduct of my research when research methods and processes were adapted to further meet the needs of the participants. A person-centred approach required that I continually assessed the need to make ethical decisions in every aspect of the research process throughout its duration. Building and drawing on positive researcher–participant relationships to inform those decisions and an adaptable research design allowing research practices to be adapted in situ were therefore essential.

In 2014, the Health Service Executive (HSE) in Ireland published its Safeguarding National Policy and Procedures (HSE, 2014). Under this policy, all agencies providing services through the social care directorate must ensure a robust culture of safeguarding is in place. Concurrent to this has been a move in social policy, practice and research to include the voice of the service user, both in terms of planning and reviewing services. (e.g. HIQA, 2012; Flanagan, 2020) This article examines whether service users with intellectual disabilities want to be involved in safeguarding plans and, if so, how that can be supported. Using focus groups service users demonstrated their knowledge of safeguarding as a concept, how they felt about the issues raised, and, crucially what they felt they would like to see happen next in addressing a safeguarding incident or concern. The focus groups took place in a large organisation providing residential services, day services, independent living supports and clinical supports. Engaging service users in planning and responding to safeguarding concerns is a fundamental principle of human rights legislation, both nationally and internationally. This study aims to highlight that it is both possible and desirable to engage fully with service users using a range of simple communication tools. For this to be implemented as routine practice in services providing support for people with intellectual disabilities, authentic leadership is required. Services will need to devote time, human resources and will need champions to get on board with the necessary culture shift.

Qualitative research examined peoples’ “lived experiences” and knowledge of safeguarding. Focus groups were used with thematic analysis highlighting common themes throughout, as guided by Braun and Clarke (2006). There were two objectives: Objective 1: measuring participant’s understanding of the safeguarding process. Objective 2: compare the potential differences between safeguarding plans devised by the participants in the focus groups, versus plans devised by trained designated officers responsible for safeguarding within the service.

Four principal themes emerged – 1. participants understanding of safeguarding; 2. restorative justice; 3. consent; and 4. high levels of emotional intelligence and compassion. Participants demonstrated that they could and did want to be involved in safeguarding planning and showed little variation in the plans compared to those completed by trained staff.

The study was completed with a small sample size in a single service in one area. It may not represent the lived experiences and knowledge of safeguarding in other services and indeed other countries. The video may have led to some priming; for instance, the Gardai in the footage being called may have resulted in the participants stating that contacting Gardai should be part of the plan. After the video was shown, there was a heightened awareness of safeguarding. This may indicate that participants are aware of safeguarding but unsure of the terminology or how to discuss it out of context.

For this to be implemented as routine practice in services providing support for people with intellectual disabilities, authentic leadership is required. Services will need to devote time and human resources and will need champions in the safeguarding arena to get on board with the shift in culture required.

While there did not appear to be many barriers to listening to participants, to progress this as a standard practice a very real shift in culture will be needed. It is important for practitioners to ask: Is the vulnerable person aware that this concern has been raised? What is known of the vulnerable person’s wishes in relation to the concern? To truly engage with service users in safeguarding plans these questions need to be more than a “tick box” exercise. This process needs to be fully embedded into a culture that promotes a person-centred, rights-based, inclusive approach as a standard rather than a one-off project. Some structural changes will be needed regarding the time given to designated officers, and what resources they can access (such as speech and language therapy). However, the real difference will be made by services operating authentic leadership that champions engagement on this scale, to fully answer the question posed by the researchers at the beginning of this report, “Whose safeguarding is it anyway?”

There appears to be little evidence of service user engagement in terms of planning and processing safeguarding responses, either in research or anecdotally.

The purpose of this paper is to report on a scoping review of the advantages and challenges of extra care housing (ECH) provision in the UK for people living with dementia. Access to suitable housing is a fundamental right for people living with dementia and can enable people to live as well as possible (Twyford and Porteus, 2021). Understanding the advantages and disadvantages of different models of housing with care has been identified as a research priority by people living with dementia (Barrett et al., 2016) but “there is no current consensus on the best model of specialist housing for people with dementia” (Twyford and Porteus, 2021, p. 29).

This scoping review identifies the advantages and disadvantages of living in ECH for people with dementia. It is the preliminary stage of a study that seeks to develop knowledge about different models of ECH for people living with dementia (Atkinson et al., 2021).

Advantages include the promotion of independence, flexible staffing, safety and security, social inclusion, physical design and integrated service provision. Disadvantages include barriers to entry, tensions between independence and support, managing advanced dementia, resourcing flexible care, managing social exclusion, loneliness and stigma and a disabling environment.

The scoping review reinforces the need for further research into different models of ECH provision in the UK for people living with dementia. The review provides insight that is of benefit to all stakeholders involved in ECH and contributes to the development of evidence-based provision called for in the recent All Party Parliamentary Group inquiry (Twyford and Porteus, 2021).

This scoping review summarises the current position for people living with dementia in ECH.

This study aims to evaluate how a community psychiatry model, referred to as the Mental Health Action Trust (MHAT) in India, provides decentralized care and comprehensive services to people with severe mental illness living in poverty. Using the complex adaptive system (CAS) framework, the authors aim to understand the factors that contribute to the diverse outcomes of the MHAT community mental health programme as observed in four different locations.

Four MHAT clinics were purposively chosen from two districts in Kerala. A comparative case study methodology was used to document each clinic’s MHAT services and activities, as found during field visits and interviews with staff members and volunteers.

The study shows that all four clinics met the basic aim of providing free, quality mental health care to the poorest populations, although not all aspects of the comprehensive model could be equally provided. Alignment with the MHAT vision, appropriate leadership, the relationship with partners and their level of community engagement determined the varied success between clinics.

The current study evaluation stresses that community ownership is crucial. Careful attention must be paid to the characteristics of selected partners, including their leadership styles and ability to garner resources.

Older people living in nursing homes have complex care needs and frequently need specialists’ advice and support that can be challenging to deliver in a rural setting. The aim of this paper is to describe a model of integrated care in a rural area supported by a nurse case manager.

A real-world evidence study of people living in Ribes de Freser nursing home, was conducted between specific timeframes in 2019 and 2022, comparing the casemix and outcomes of a traditional care model with the integrated interdisciplinary model.

The integrated care model led to a significant reduction in transfers to the emergency department, hospitalisations, outpatient medical visits and a reduction in the number of medicines. In addition, the number of residents receiving end-of-life care at the nursing home showed a substantial increase.

This case study contributes valuable evidence supporting the implementation of an integrated model of nurse case manager support in nursing homes, particularly in the rural contexts, where access to specialist medical staff may be limited. The findings highlight the potential benefits of person-centred integrated care for older adults, addressing their complex needs and improving end-of-life care in nursing home settings.

A significant increase in financial crime globally emphasises the importance of forensic interviewing to obtain useful and reliable information as part of a commercial forensic investigation. Previous research has identified two interviewing strategies that are aligned with the legal framework in South Africa: the PEACE model (P = preparation and planning; E = engage and explain; A = account, clarify and challenge; C = closure; E = evaluation) and the person-centred approach (PCA). The purpose of this paper is to explore the theoretical underpinnings and application of the PEACE model and the PCA as commercial investigative strategies aligned with the legal context in South Africa.

A scoping review was undertaken to identify literature relevant to the theoretical assumptions and application of the PEACE model and the PCA.

Literature for the most part reports on the PEACE model but offers very little information about the PCA. A critical analysis revealed that the PEACE model incorporates a clear guiding structure for eliciting information but lacks content needed to create an optimal interpersonal context. To promote this, the PCA proposes that interviewers demonstrate three relational variables: empathy, congruence and unconditional positive regard. The PCA suggests a basic structure for interviewing (beginning, middle and end), while providing very little guidance on how to structure the forensic interview and what information is to be elicited in each phase.

Combining the PEACE model and PCA presents an integrated interviewing technique best suited for obtaining useful and reliable information admissible in a South African court of law. The PEACE model has a clear structure, and the PCA assists in creating an optimal interpersonal context to obtain information in an interview.

Integrated care (IC) is mainly studied from the perspectives of organisations or employees. However, less research is focussed on how patients themselves experience person-centred (PC) IC in practice. This context-specific, small-scale study examines what PC-IC means to older patients who went through joint replacement surgery (JRS).

The data consists of ten in-depth interviews of older patients, focussing on their experiences of care during their patient journey related to joint knee or hip replacement surgery. The data were analysed with thematic analysis.

Three central dimensions of PC-IC for older patients were identified: information sharing, continuity of care and compassionate encountering. Human validation and compassionate encountering were experienced as important aspects of PC-IC. Compassionate encountering was concretised through professionals’ very small everyday practices, which made the patient feel comfortable and respected. Instead, probably due to the medical and quite straight-forward nature of the joint replacement care process, patients seem to be pleased to trust the expertise of professionals and did not necessarily expect an active role or participation in the decision-making.

This Finnish case study focusses on the patients’ authentic perceptions of what is central to person-centred IC in the specific context of JRS.

The purpose of this paper is to explore and describe the perspectives and reasoning of senior development leaders in healthcare organizations, when reflecting on design as theory and practice in relation to more traditional methods and tools for improving quality and support innovation.

The paper is based on a qualitative interview design with five development and innovation leaders from separate healthcare regions in Sweden. They have, to varying degrees, applied design theory and practice for quality improvement and innovation in their organizations. The interview transcript was analysed using a content analysis together with an interpretive approach.

The major findings are to be found in the balancing act for leadership and organizations in healthcare when it comes to introducing and combining different theories and practices for improving quality and support innovation. The balance is between the change in power dynamics and pushing traditional boundaries in a complex healthcare world.

The narratives from the leaders' experience of applying design theory and practice for improving healthcare quality can help us create readiness and knowledge about how we prevent and/or facilitate planning and implementing design theories, practices, methods and tools in a healthcare context.

The study provides a unique insight when it captures and illustrates five different organizations' experiences when applying design for developing healthcare quality.

The purpose of this paper is twofold: to explore the existing evidence around dementia services and interrogate the overarching UK policy development relating to service inclusion of black and minoritised groups. The paper will go on to identify the implications for the dementia wellness pathway and make recommendations regarding how services can be more inclusive.

This paper examines the policy/practice landscape around dementia care provision and observes if lessons can be learnt to improve health outcomes for people living with dementia from black and minoritised communities.

A review of dementia policy demonstrates how opportunities to improve the awareness, diagnosis and post-diagnostic support for minoritised communities are being missed. The outcomes of this mean that individuals are denied vital treatment and support, which could enhance quality of life and delay the progression of dementia.

The authors’ premise is that not meeting the dementia support needs of less-heard communities has negative financial as well as social and health-related outcomes and has wider resonance and implications for all stages of the dementia wellness pathway. Moreover, there is a legal responsibility for public services to provide culturally sensitive, responsive, appropriate and available care, to all people, without discrimination.

This paper offers a valuable review of policy and practice around dementia care in the UK and makes recommendations to improve health outcomes for people living with dementia from black and minoritised communities.

The purpose of this study is to develop a model describing different factors that affect quality and efficiency in transitional care.

A meta-synthesis focusing on the transitions between wards was conducted within a research project. The results from eight studies within that research project have been combined and analysed from a holistic view.

The findings are a model with a description of seven different categories consisting of the identified factors affecting quality and efficiency in transitional care. Those categories are (1) learning organisation, (2) standardising and structuring, (3) applying a holistic view, (4) understanding organisational culture in a health care context, (5) management and leadership, (6) for whom value is created and (7) working together. The results from the study have been verified in previous research.

The result of the completed meta-synthesis is based on studies conducted at two medium-sized hospitals in Sweden. The developed model can be used in a similar context to improve quality and efficiency in patient transfers by management and employees working based on the various factors.

This model describes factors (success factors, prerequisites, conditions and lack thereof) affecting the ability to achieve quality and efficiency in transitional care that can be used in future research as well as for practical improvements.