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Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital. Objective: To develop C-POS:UK (Children's Palliative Care Outcome Scale, UK), a person-centred outcome measure (PCOM) for children with life-limiting conditions and their families, and to test its psychometric properties. Design: Sequential mixed-methods approach to PCOM development, guided by Rothrock's measure development process and COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology. Methods: (i) Qualitative interviews about priority symptoms and concerns, with embedded exploration of measure design for children with life-limiting conditions; (ii) systematic review of measure design for children; (iii) modified Delphi survey, and consultation with children, on priority items for new measure; (iv) expert item generation meeting to develop C-POS:UK; (v) cognitive testing to refine C-POS:UK; (vi) psychometric validation. Results: (i) 106 participants described physical, emotional/psychological, spiritual/existential, social and practical concerns. Measure design was discussed by 79 participants comprising preferred response format, recall period and measure administration for children with life-limiting conditions; (ii) systematic review highlighted need for: different versions of measure accounting for child's developmental stage and cognitive ability; parent/carer involvement as proxies for very young children; and testing to clarify recall periods and response formats at different developmental stages; (iii) Delphi survey: 82 participants (in the first round), with a move towards consensus, but with some differing priorities in stakeholder groups: professionals prioritised physical symptoms, parents prioritised psychosocial and practical matters, while consulted children prioritised normality; (iv) 22 experts contributed to item generation meeting, resulting in five versions of C-POS:UK accounting for child's developmental stage and cognitive ability, and proxy involvement; (v) 48 participants cognitively tested initial C-POS:UK, informing comprehension, comprehensiveness and acceptability; (vi) psychometric validation is ongoing. Conclusion: A sequential approach informed by Rothrock and COSMIN has supported development of the first version of C-POS:UK. Psychometric validation is underway and will be followed by implementation planning. [ABSTRACT FROM AUTHOR]

Background: People with dementia have complex palliative care needs that are often unmet, including physical and psycho‐social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co‐design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes—the EMBED‐Care Framework. Methods: A systematic co‐design approach was adopted to develop the EMBED‐Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co‐design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. Results: The Framework was co‐designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale‐Dementia (IPOS‐Dem); 2) alert system of IPOS‐Dem scores to highlight unmet needs; 3) IPOS‐Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence‐informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face‐to‐face sessions, clinical champions who received additional face‐to‐face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. Conclusions: This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. Patient or Public Contribution: We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings. [ABSTRACT FROM AUTHOR]

Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. Setting/participants: Children 5–⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision‐making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision‐making about their care varies. We aimed to co‐design the EMBED‐Care Framework, to enhance shared decision‐making between people affected by dementia and practitioners. Methods: A theory and evidence driven co‐design study was conducted, using iterative workshops, informed by a theoretical model of shared decision‐making and the EMBED‐Care Framework (the intervention) for person‐centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision‐support tools to support shared decision‐making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision‐making, and the requirements for use, presented as a logic model. Results: Five co‐design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision‐making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. Conclusions: The intervention developed sought to enhance shared decision‐making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face‐to‐face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work. [ABSTRACT FROM AUTHOR]

Background: Most individuals with dementia in the UK die in care homes. 70% of these are residential, relying on external healthcare professionals to manage the complex needs. eHealth can help facilitate the delivery of holistic care in care homes, yet adoption has traditionally been faced with resistance. Innovative approaches employing Methods from implementation science are required to promote the uptake of eHealth in care homes. Aim: To evaluate the feasibility of a theoretically-informed co-designed implementation plan for an eHealth intervention to support holistic assessment and decision making for people with dementia in care homes and their family carers, and to identify opportunities to strengthen it. Methods: An embedded mixed-Methods study conducted in two residential care homes. Qualitative data comprised non-participant observations of the intervention in use, focus groups and semi-structured interviews with care home staff. Data was analysed using a codebook thematic analysis underpinned by the Normalistion Process Theory. Quantitative data included app usage data and two implementation measures, analysed using descriptive statistics. Patient and public involvement informed development and conduct of the study. Results: 20 care home staff across two care homes used the intervention with 26 residents. Whilst there was some evidence of adoption, reach within the care home and feasibility of its implementation, usage data indicated that the intervention was largely not utilised as intended. Whilst there was sufficient coherence around the intervention, staff faced barriers related to collective action including workload and incompatibility with practice. Reflexive monitoring was therefore low as individuals could not appraise its impact, which compromised staff cognitive participation. Revisions to the plan related to strategies to provide further staff support, including encouraging family involvement and a more tailored approach to training. Conclusions: Evaluating feasibility of the implementation plan of the intervention was a vital step in its development. Rapid evaluation and iterative response to barriers to use informed learning and allowed for real- time adjustments to implementation strategies, and a set of updated recommendations for use. Further collaboration on the revised strategies with people living with dementia and their family carers is required. [ABSTRACT FROM AUTHOR]