BACKGROUND: Decisions about driving for individuals living with dementia (ILWD) can be challenging. There are limited evidence-based person-centred interventions in the United Kingdom that support decisions about transitioning to not driving or guidelines for developing decision aids for ILWD. This study aimed to understand the important features of a decision aid through the cultural adaptation of Australian dementia and driving decision aid (DDDA) for ILWD residing in the United Kingdom.
METHODS: This qualitative study was theoretically underpinned by a person-centred framework and conducted over three stages: (1) Development of a draft UK-specific DDDA; (2) semistructured interviews with ILWD and an online survey with stakeholders to obtain their views on a draft UK DDDA and (3) content analysis and synthesis of qualitative data to inform the final version of the decision aid.
RESULTS: Eleven ILWD and six of their spouses participated in interviews, and 102 stakeholders responded to an online survey. The four broad features identified as important to include in a decision aid for drivers living with dementia were: a structured and interactive format; positive and supportive messaging and presentation; relevant and concise content and choice-centred. The perceived benefits of the decision aid were identified as supporting conversations, enhancing collaborative decision making and enabling agency with decisions about driving and future mobility options.
CONCLUSIONS: Decision aids that are underpinned by interactive choice-driven questions enhance a person-centred approach to decisions about driving. Positively framing decision aids through the presentation and content can facilitate engagement with the decision-making process about driving. The findings have implications for the development of decision aids designed for ILWD on other important health and social topics.
UNASSIGNED: Advocating for the development of a UK DDDA were ILWD. Healthcare professionals contributed to the development of a draft UK DDDA. Former and current drivers living with dementia, family members, healthcare professionals and other support networks of ILWD participated in interviews or an online survey which informed the final version of the UK DDDA.

BACKGROUND: Improving palliative and end-of-life care for people with dementia is a growing priority globally. This study aimed to integrate multiple perspectives on end-of-life care for people with dementia and carers, to identify clinically relevant areas for improvement.
METHODS: The mixed-methods study involved surveys, interviews, and workshops with two participant groups: healthcare professionals and carers (individuals who provided care and support to a family member or friend). Healthcare professionals were invited to complete an online adapted version of the Australian Commission on Safety and Quality in Health Care, End-of-Life Care Toolkit: Clinician Survey Questions. Carers completed a hard copy or online adapted version of the Views of Informal Carers-Evaluation of Services (Short form) (VOICES-SF) questionnaire. Interview schedules were semi-structured, and workshops followed a co-design format. Findings were integrated narratively using a weaving approach.
RESULTS: Five areas in which we can improve care for people with dementia at the end of life, were identified: 1) Timely recognition of end of life; 2) Conversations about palliative care and end of life; 3) Information and support for people with dementia and carers; 4) Person-and-carer-centred care; 5) Accessing quality, coordinated care.
CONCLUSIONS: There are multiple areas where we can improve the quality of end-of-life care people with dementia receive. The findings demonstrate that the heterogeneous and challenging experiences of living with and caring for people with dementia necessitate a multidisciplinary, multifaceted approach to end-of-life care. The identified solutions, including care coordination, can guide local development of co-designed models of end-of-life care for people with dementia.

BACKGROUND: Researchers in the Netherlands proposed the Pillars for Positive Health (PPH) as a broadly encompassing health definition to support more realistic and meaningful care planning for people living with chronic disease and other life-long health conditions. The PPH was subsequently converted to the My Positive Health (MPH) spider web visualization tool. This study sought to identify opportunities for more person-centred care planning at the point of care in home care, using the MPH tool as a framework to link comprehensive assessment and dialogue-based goal-setting.
METHODS: A modified eDelphi method was used to conduct domain mapping with a purposively sampled expert panel (n = 25). The panel consisted of researchers, health care providers, older adults and caregivers. A two-stage eDelphi process was conducted, with each stage consisting of three survey rounds. In the first stage, participants were asked to map 201 elements of the interRAI Home Care (interRAI HC) comprehensive assessment tool to the six MPH domains or \"No pillar of best fit\". The second stage focused on identifying opportunities to adapt or expand comprehensive assessment as it relates to the MPH domains.
RESULTS: In Stage 1, 189 of 201 elements reached consensus in domain mapping. These included: 80 elements for Bodily Functions, 32 for Daily Functioning, 32 for Mental Wellbeing, 24 for Quality of Life, 10 for Participation, and 1 for Meaningfulness. Ten elements were identified to have no pillar of best fit. The 12 elements that did not reach consensus in Stage 1 formed the basis for Stage 2, where expert panel participants proposed four new assessment elements in Meaningfulness and Participation and 11 additional descriptors across the six MPH domains. Of these, two elements and nine of the 11 descriptors reached consensus.
CONCLUSIONS: Findings show that elements of the interRAI HC are oriented toward the physical, functional, and mental health domains. Consequently, complementary assessment elements and/or tools may be needed to support comprehensive assessment of \'Meaningfulness\' and \'Participation\' in person-centred home and community care. Additional descriptors may also be needed to aid communication regarding the understanding and application of MPH domains.

OBJECTIVE: To explore nurses\' experiences of using the Integrated Palliative care Outcome Scale (IPOS) as a communication tool in specialized palliative care.
METHODS: This study employed a qualitative inductive approach. The Standards for Reporting Qualitative Research were followed for reporting.
METHODS: Five focus groups were conducted with nurses from four specialized palliative care units, and the discussions were analysed with quality content analysis.
RESULTS: Using IPOS for communication with the patient gave an opportunity to understand the patient\'s care needs and to let these care needs guide care interventions. Prerequisites in terms of relation, atmosphere, skills and flexibility were needed to establish an interactive communication. It was challenging to communicate about issues that evoked emotional reactions in the patient. There was a balancing act between the use of a structured scale and overcoming communication challenges. Nonetheless, when the two complemented each other, IPOS was a useful tool for nurses to promote person-centred care.

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To explore nursing assistants\' (NAs\') experiences of developing communication skills while participating in an educational intervention on person-centred communication.
A descriptive qualitative study was conducted.
Data were collected from interviews and written assignments before, during and after an educational intervention on person-centred communication targeting NAs in home care services. The data were analysed using a phenomenological approach. A total of 25 NAs participated in the study.
The findings describe NAs\' experiences concerning the communication skills needed for building relationships with older persons and handling emotionally challenging situations. The educational intervention increased their knowledge and awareness of the importance of communication skills and how such skills are developed and refined.

When a person with severe dementia is in hospital and has eating and drinking difficulties, communication between the multidisciplinary team and families can be challenging and lead to suboptimal care.
To gain in-depth understanding about the experiences, views and needs of family carers and hospital staff, regarding communication and conversations about nutrition and hydration, for hospital patients with severe dementia.
Qualitative semi-structured interview study.
Acute hospital in England.
From January to May 2021, semi-structured interviews were conducted with 29 family carers and hospital staff. Interviews were transcribed verbatim and analysed using reflexive thematic methods.
Four overarching themes were developed: (i) prerequisites to initiating communication about eating and drinking; (ii) communication aiming to develop agreed care plans; (iii) difficulty discussing palliative and end-of-life care; and (iv) needs of information and plans about future eating and drinking difficulties. Families tended to wait for hospital staff to initiate discussions but usually experienced frustration with delays and repeated conversations with different staff. Some staff felt unprepared to manage these conversations and found it challenging to work across the multidisciplinary team. During discharge processes, key information and care plans about eating and drinking were not regularly passed on to people involved to avoid unnecessary readmissions.
In acute hospitals, family carers and hospital staff can have disjointed communications and conversations about nutrition and hydration for persons with severe dementia. Timely reassurance, ongoing discussions and clear information sharing will support communication between those involved.

UNASSIGNED: Occupational therapists are encouraged to use research evidence to guide therapeutic interventions that holistically address the consequences of dementia. Recent efforts to use research evidence in practice have emphasized the challenges of doing so in ways aligned to person-centred and professional principles. Using research evidence is a complex process influenced by multiple contextual factors and layers. The influence of context in occupational therapy for dementia is currently unclear.
UNASSIGNED: To explore the contextual complexities of using research evidence in practice with people with dementia, and to develop knowledge to improve the approach to using evidence in person-centred, occupation-focused practice.
UNASSIGNED: A case study methodology was used, in which the contextual conditions of practice were clarified through the facilitation of critical and creative reflection using the following methods - Think Aloud, practice observation, creative expression and reflective dialogue.
UNASSIGNED: Cultural beliefs that affected evidence use included technically-orientated understandings of evidence-based practice. These were underpinned by apprehensions about losing professional identity and taking risks when processes derived from research evidence were adjusted to incorporate a persons\' occupations. These cultural factors were perpetuated at the organizational layers of context, where systemic priorities and other team members\' needs disproportionately influenced occupational therapists\' decisions.
UNASSIGNED: Occupational therapists\' potential to make reflexive and responsive decisions by adjusting evidence-based processes can be affected by their perceived freedom to address organizational tensions. Raising consciousness of the influence of the organizational context on decision-making about evidence use could adjust occupational therapists\' perceptions of their freedom and ability to be person-centred. Intentionality in reflective processes in practice are required to foster reflexivity.

BACKGROUND: People with severe psychiatric disabilities and impaired autonomy, living in sheltered or supported housing facilities, often lead sedentary, solitary lives indoors and have significantly poorer health than others in the population. Meaningful everyday activities are important for the recovery towards an enrichening, agentic, social, and hopeful everyday life. The Everyday Life Rehabilitation (ELR) model-a person-centred activity- and recovery-oriented intervention-has shown positive outcomes in feasibility studies, and thus a randomised controlled trial (RCT) is required to establish the effectiveness of ELR, along with calculations of cost-effectiveness.
METHODS: The ELR-RCT is a pragmatic, two-parallel-armed cluster RCT evaluating the effect and cost-effectiveness of using ELR from two measurement points over 6 months (pre-post intervention) and in three waves over 3 years. The primary outcome is recovering quality of life (ReQoL) at 6 months, and the secondary outcome is self-perceived recovery and daily functioning (RAS-DS) at 6 months. Additionally, Goal Attainment Scaling (GAS) will be used for the intervention group. Power analysis has been conducted for primary outcome measure. The first wave will include an internal pilot, to be evaluated after 6 months, used as basis for decisions on updating the required sample size and any other need for adaptations before continuing with the full-scale RCT in the second and third wave. All municipalities within a geographic area in northern Sweden, with a minimum of one sheltered or supported housing facility for people with severe psychiatric or neuropsychiatric disability, including access to occupational therapy, will be enrolled. Participants will be block-randomised to receive ELR plus treatment as usual (TAU) or TAU alone for a control period. The control group will thereafter receive delayed ELR. Occupational therapists and housing staff will receive an educational package, manuals, and tools, as well as reflections with colleagues during the intervention period. Housing managers will receive questions for monthly follow-up and coaching with staff.
CONCLUSIONS: This is a protocol for both an internal pilot and full trial of the first RCT study using the ELR intervention model in sheltered or supported housing facilities, evaluating the effects together with cost-effectiveness.
BACKGROUND: ClinicalTrials.gov NCT05056415. Registered on 24 September 2021.

Advanced proactive personalised telecare services in Spain have helped service users to live independently in their own homes for longer. Concern was however noted regarding potential impacts on ambulance mobilisations as time in the service, and mean age at cessation, increased. The purpose of this study was to investigate these impacts. A longitudinal study of a telecare service user population in Spain (n = 202.1 k to 247.9 k) was undertaken using anonymised operational data collected in the delivery of proactive and personalised telecare services over the period 2014-2018. For the studied population, ambulance mobilisation on a per-person/per-annum (pp/pa) basis reduced despite the increasing age profile at cessation and with the characteristics of the population at registration remaining otherwise similar over the period. The study identified the positive correlation coefficient between ambulance mobilisations and service user\'s dependency levels, and marginal negative correlation in older age bands. In conclusion, the increasing age at cessation has not correlated with an increased proportion of higher dependency service users. Indeed, the share of those over 85 years in the high dependency level decreased. This indicates that the changes in the telecare service which appear to have contributed to increased time living independently may also have helped ensure those continuing to live independently remain in lower risk bands.