BACKGROUND: Patients with advanced dementia experience multifaceted vulnerabilities because of their diminished capacities for decision making. The dominant versions of person-centred care (PCC) emphasise patient preferences and autonomy, which often undermines a recognition of their distinct unfulfilled needs. Determining whether an individual autonomy conception of personhood applies to patients with advanced dementia is morally problematic from various theoretical perspectives and leads to the one-approach-fits-all problem when caring for this patient population.
OBJECTIVE: The availability of patients\' advanced directives varies depending on their cultural backgrounds. The goal of the study is to argue that PCC, with a focus on relational autonomy, should be the first step for caring for patients with advanced dementia.
METHODS: The study engages in a critical exploration of inclusivity and diversity in ethical thinking within a framework of PCC and uses philosophical argumentation to assess the viability of a relational autonomy conception of PCC.
CONCLUSIONS: By taking relationality seriously, especially in caring for patients with advanced dementia in a multicultural society, and by considering the moral nexus of unmet needs through the perspective of PCC, we can resolve the problem of one-approach-fits-all in dementia care.

Policy makers and health professionals are grappling with the high costs of and demand for health care, questions of sustainability and value, and changing population demographics-in particular, ageing populations. Digital solutions, including the adoption of patient-reported measures, are considered critical in achieving person-centred and value-based health care. However, the utility of patient-reported measures and the data they produce may be subject to ageist beliefs, prejudices and attitudes, rendering these data ineffective at promoting improved patient experiences and outcomes for older adults. This article explores the ethical considerations raised in relation to patient-reported measures and the digital agency of older patients.

BACKGROUND: Social robots are promising tools to improve the quality of life of children and youth living with anxiety and should be developed based on the priorities of end users. However, pathways to include young people in patient-oriented research, particularly in the overlap between technology and mental health, have been historically limited.
OBJECTIVE: In this work, we describe engagement with experts with lived experiences of paediatric anxiety in a social robotics research programme. We report the experiences of patient advisors in a co-creation process and identify considerations for other research groups looking to involve end users in technology development in the field of youth mental health.
METHODS: We engaged individuals with a lived experience of paediatric anxiety (current, recent past, or from a parent perspective) using three different models over the course of three years. Two initial patient partners were involved during project development, eight were engaged as part of an advisory panel (\'the League\') during study development and data analysis and four contributed as ongoing collaborators in an advisory role. League members completed a preparticipation expectation survey and a postparticipation experience survey.
RESULTS: Eight individuals from a range of anxiety-related diagnostic groups participated in the League as patient partners. Members were teenagers (n = 3), young adults aged 22-26 years who had connected with a youth mental health service as children within the past eight years (n = 3) or parents of children presently living with anxiety (n = 2). Preferred methods of communication, expectations and reasons for participating were collected. The League provided specific and actionable feedback on the design of workshops on the topic of social robotics, which was implemented. They reported that their experiences were positive and fairly compensated, but communication and sustained engagement over time were challenges. Issues of ethics and language related to patient-centred brain health technology research are discussed.
CONCLUSIONS: There is an ethical imperative to meaningfully incorporate the voices of youth and young adults with psychiatric conditions in the development of devices intended to support their mental health and quality of life.
UNASSIGNED: Six young people and two parents with lived experiences of paediatric anxiety participated in all stages of developing a research programme on social robotics to support paediatric mental health in a community context. They also provided input during the preparation of this manuscript.

BACKGROUND: Patients living with obesity often experience weight stigma in healthcare settings, which has worrying consequences for their healthcare experiences. This cross-sectional study aimed to: (1) provide an overview of stigmatising experiences in healthcare settings reported by adults living with varying classes of obesity, (2) identify associations among patient characteristics and perceived weight stigma and (3) investigate the association between perceived weight stigma and person-centred care (PCC).
METHODS: Dutch adults living with obesity classes I (body mass index [BMI]: 30 to <35 kg/m2; n = 426), II (BMI: 35 to <40 kg/m2; n = 124) and III (BMI: ≥40 kg/m2; n = 40) completed measures of perceived weight stigma in healthcare settings and PCC. Descriptive, correlational and multivariate analyses were conducted.
RESULTS: Of patients living with classes I, II and III obesity, 41%, 59% and 80%, respectively reported experiences of weight stigma in healthcare settings. Younger age, greater obesity severity and the presence of chronic illnesses were associated with greater perceived weight stigma. Greater perceived weight stigma was associated with lower PCC.
CONCLUSIONS: The results of this study emphasise the significant role of weight stigma in the healthcare experiences of patients living with obesity. Reducing weight stigma is expected to improve PCC and the overall quality of care for these patients. Minimising weight stigma will require efforts across various healthcare domains, including increasing awareness among healthcare professionals about sensitive communication in weight-related discussions.
UNASSIGNED: Our sample consisted of patients living with obesity. Additionally, patients were involved in the pilot testing and refinement of the PCC instrument.

BACKGROUND: Many older people who cannot live independently live in aged residential care facilities to obtain support with social and healthcare needs. Despite old age being a precious time for people to live well, many facility residents have limited access to activities that promote their well-being and connectedness. In New Zealand, one provider of aged residential care developed a village inspired by de Hogeweyk in the Netherlands, where resident engagement in valued activities supports continuing lifelong identities.
METHODS: The study aimed to explain the transition from a traditional Aged Residential Care facility to a clustered domestic model of care. A critical realist theoretical perspective underpinned case study research. Data comprised transcripts of interviews with key informants, facility staff, residents and their families, records of observation of residents\' daily lives, organisational documents, photographs and the first author\'s study journal.
RESULTS: The intersection of philosophical workplace change to support delivery of person-centred care and a change in the physical environment enabled realisation of the organisational vision of residents living normal lives.
CONCLUSIONS: Policy makers and practitioners must be aware that while a domestic-scale environment provides cues to normal living, staff who know residents and what is important to them enable participation in community and valued activities.
CONCLUSIONS: Innovative living arrangements are a synthesis of philosophical aspirations, architectural and design vision, dedicated leadership and committed teamwork.

OBJECTIVE: To explore patients\' and community nurses\' perceptions and experiences of shared decision-making in the home.
METHODS: Integrative review.
METHODS: CINAHL, British Nursing Index, Psycinfo, Medline and Social Services Abstracts were searched for qualitative, quantitative and mixed methods papers published between 1 December 2001 and 31 October 2023.
METHODS: A systematic search of electronic databases was undertaken using defined inclusion criteria. The included papers were appraised for quality using the Joanna Briggs Institute critical appraisal checklist for qualitative research. Relevant data were extracted and thematically analysed.
RESULTS: Fourteen papers comprising 13 research studies were included. Patients attached great importance to their right to be involved in decision-making and noted feeling valued as a unique individual. Communication and trust between the patient and nurse were perceived as fundamental. However, shared decision-making does not always occur in practice. Nurses described tension in managing patients\' involvement in decision-making.
CONCLUSIONS: The findings demonstrate that although patients and community nurses appreciate participating in shared decision-making within the home, there are obstacles to achieving a collaborative process. This is especially relevant when there are fundamentally different perspectives on the decision being made. More research is needed to gain further understanding of how shared decision-making plays out in practice and to understand the tensions that patients and nurses may experience.
UNASSIGNED: This paper argues that shared decision-making is more than the development of a relationship where the patient can express their views (though of course, this is important). Shared decision-making requires acknowledgement that the patient has the right to full information and should be empowered to choose between options. Nurses should not assume that shared decision-making in community nursing is easy to facilitate and should recognize the tensions that might exist when true patient choice is enabled.
CONCLUSIONS: This paper demonstrates how the idea of shared decision-making needs to be explored in the light of everyday practice so that challenges and barriers can be overcome. In particular, the tensions that arise when patients and nurses do not share the same perspective. This paper speaks to the potential of a gap surrounding shared decision-making in theory and how it plays out in practice.
UNASSIGNED: The reporting of this review was guided by the 2020 guidelines for the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (Page et al., 2021).
UNASSIGNED: This review was carried out as part of a wider study for which service users have been consulted.

OBJECTIVE: To describe how clinicians provide culturally responsive care to culturally diverse people with kidney failure in haemodialysis centres.
BACKGROUND: Culturally diverse individuals receiving in-centre maintenance haemodialysis have unique cultural needs. Unmet cultural needs can impair and profoundly affect their experiences. Given culturally responsive care has the potential to enhance the experiences of culturally diverse people, it is vital to understand how clinicians provide culturally responsive care.
METHODS: A scoping review was undertaken using Arksey and OMalleys framework. Five databases: Medline and CINAHL Complete (EBSCO), PsycINFO, Embase (OVID) and ProQuest Theses and Dissertation databases were searched for research literature published in English between 1990 and 2023. Narrative synthesis was used to synthesise the data.
RESULTS: From the 17,271 records screened, 17 papers reporting 14 studies met the inclusion criteria. Narrative synthesis revealed two themes: (i) communication enablers and barriers including linguistic differences, professional and lay interpreter use; and (ii) the importance of culture, which encompassed acknowledging cultural priorities, accommodating cultural food preferences and access to cultural training.
CONCLUSIONS: While competing priorities associated with haemodialysis may be a challenge for clinicians, recognising the significance of cultural care needs and accommodating them in care is important. Demonstrating respect towards cultural diversity and providing person-centred care by facilitating the unique cultural needs of people with kidney failure in haemodialysis is imperative.
CONCLUSIONS: Culturally responsive care is complex and multidimensional. Individuals\' cultural care needs should be acknowledged, respected, and accommodated in care.
UNASSIGNED: No patient or public contribution. The study protocol was registered in the Open Science Framework. https://osf.io/uv8g3.

In this article, we investigate how the concept of Care Biography and related concepts are understood and operationalised and describe how it can be applied to advancing our understanding and practice of holistic and person-centred care. Walker and Avant\'s eight-step concept analysis method was conducted involving multiple database searches, with potential or actual applications of Care Biography identified based on multiple discussions among all authors. Our findings demonstrate Care Biography to be a novel overarching concept derived from the conjunction of multiple other concepts and applicable across multiple care settings. Concepts related to Care Biography exist but were more narrowly defined and mainly applied in intensive care, aged care, and palliative care settings. They are associated with the themes of Meaningfulness and Existential Coping, Empathy and Understanding, Promoting Positive Relationships, Social and Cultural Contexts, and Self-Care, which we used to inform and refine our concept analysis of Care Biography. In Conclusion, the concept of Care Biography, can provide a deeper understanding of a person and their care needs, facilitate integrated and personalised care, empower people to be in control of their care throughout their life, and help promote ethical standards of care.

BACKGROUND: Women and those with younger onset Parkinson\'s Disease (YOPD) are typically diagnosed later and face unique situations and challenges. This essay aims to raise awareness of the difficulties in diagnosing YOPD and the need for a personalised approach to care for women with YOPD.
METHODS: Two professional women with YOPD (academic physiotherapist and practicing dentist) and a female neurologist (clinician academic) came together to write a narrative essay on their personal experience and perspectives in relation to women and YOPD.
RESULTS: The essay outlines how the experience of diagnosis is likened to a complex puzzle box with many interlocking components that are hidden and difficult to solve. The concerns of the women about their identity, work, family and the future, with most supports targeting those that are older and retired are outlined.
CONCLUSIONS: It is concluded that YOPD is a complex puzzle to solve, but can be done by understanding all the intricate interlocking components of the puzzle and combined with greater awareness could lead to earlier diagnosis and the delivery of successful person-centred care.
UNASSIGNED: People with lived experience were involved in the essay conception and writing.

OBJECTIVE: Communication is a key factor in intraprofessional collaboration between hospital nurses and homecare nurses in hospital-to-home transitions of older patients with complex care needs. Gaining knowledge of the nature of cross-sectoral communication is crucial for understanding how nurses collaborate to ensure a seamless patient trajectory. This study explores how cross-sectoral electronic health records communication influences collaboration between hospital nurses and homecare nurses when discharging older patients with complex care needs.
METHODS: The study is based on qualitative group interviews with six hospital nurses and 14 homecare nurses working at different hospitals and municipalities across Denmark. Data were analysed using reflexive thematic analysis, as described by Braun and Clark.
RESULTS: The themes Collecting pieces for the \'puzzle\': Losing the holistic picture of the patient; Working blindfolded: limited provision of and access to critical information; and Bypassing the \'invisible wall\': dialogue supports cohesion illustrate the impact of organisational structures within electronic health records have on hospital nurses\' and homecare nurses\' intraprofessional collaboration across sectors. Challenges with predefined and word-limited elements in digital communication, and inadequate and limited access to significant medical information were identified. To compensate for the inadequacy of the electronic health records, direct contact and dialogue were emphasised as ways of fostering successful collaboration and overcoming the barriers created by electronic health records.
CONCLUSIONS: Despite hospital nurses\' and homecare nurses\' desire to conduct holistic patient assessments, their ability to collaborate was hindered by failures in electronic health record communication resulting from restrictive organisational structures across sectors. Thus, it became necessary for hospital nurses and homecare nurses to bypass the electronic health record system and engage in dialogue to provide holistic care when discharging older patients with complex care needs. However, by hospital nurses and homecare nurses compensating for counter-productive organisational structures, problems brought about by the electronic health record system paradoxically remain invisible.