Family-Integrated Advance Care Planning for Cancer Patients: A Mixed-Methods Feasibility Study.

Context: Advance care planning programs which focus on facilitating conversations among families are scant. We developed a family-integrated Serious Illness Conversation Guide (SICG-Fam).

Objectives: This study aims to examine the ability and acceptability of the SICG-Fam for advanced cancer patients, family members and physicians in Japan.

Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK).

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.

Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.

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.

The Use of Person-Centered Outcome Measures to Support Integrated Palliative Care for Older People: A Systematic Review.

Objectives: The aim was to synthesize evidence on the use of person-centered outcome measures to facilitate integrated palliative care for older people and build a logic model depicting the mechanisms through which person-centered outcome measures support integrated care.

Design: Mixed methods systematic review using a data-based convergent synthesis design.

Setting And Participants: Older people aged ≥60 years who are approaching the end of their lives in multiple settings.

What are the barriers and facilitators to advance care planning with older people in long-term care facilities? A qualitative study.

Aim: To explore the views and preferences for advance care planning from the perspectives of residents, family members and healthcare professionals in long-term care facilities.

Design: A qualitative descriptive design.

Methods: We conducted semi-structured interviews with 12 residents of long-term care facilities, 10 family members and 14 healthcare professionals.

Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.

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.

Co-design of a theory-based implementation plan for a holistic eHealth assessment and decision support framework for people with dementia in care homes.

Background: Despite positive findings around the use of eHealth in dementia care, it is rarely translated into routine practice. This can be facilitated by early involvement of end-users in the development of an implementation plan. This study aimed to co-design strategies to implement an eHealth intervention, the EMBED-Care Framework, to support assessment and decision-making for people with dementia in care homes.

Complexity and function of family involvement in advance care planning: A qualitative study of perspectives from people living with advanced cancer, family members and healthcare professionals.

Background: Family members can support advance care planning conversations. However, how family involvement in advance care planning operates to achieve goal-concordant care remains unclear.

Aim: To explore how family involvement impacts the process of advance care planning for advanced cancer patients and their family members to achieve goal-concordant care in Japan.

Implementation of child-centred outcome measures in routine paediatric healthcare practice: a systematic review.

Background: Person-centred outcome measures (PCOMs) are commonly used in routine adult healthcare to measure and improve outcomes, but less attention has been paid to PCOMs in children's services. The aim of this systematic review is to identify and synthesise existing evidence of the determinants, strategies, and mechanisms that influence the implementation of PCOMs into paediatric healthcare practice.

Methods: The review was conducted and reported in accordance with PRISMA guidelines.

Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members.

Background: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities.

Objectives: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members.

Provision of palliative and end-of-life care in UK care homes during the COVID-19 pandemic: A mixed methods observational study with implications for policy.

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes.

Materials And Methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners.

Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study.

Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer.

Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions.

The acceptability and effectiveness of eHealth interventions to support assessment and decision-making for people with dementia living in care homes: A systematic review.

Introduction: As dementia progresses, care needs increase leading many to require 24-h care in care homes. eHealth interventions have the potential to improve care processes of assessment and decision-making for people with dementia. However, little is known on the acceptability and effectiveness in care homes.

Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

Unlabelled: This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK.

Mechanisms and contextual influences on the implementation of advance care planning for older people in long-term care facilities: A realist review.

Background: Older people in long-term care facilities face clinical uncertainty and unpredictable decline. Advance care planning enables older people to identify preferences and wishes for future treatment and care before any loss of capacity. However, it is unclear how, why and under what circumstances the implementation of advance care planning for older people can be normalised into routine practice within long-term care facilities.

How do person-centered outcome measures enable shared decision-making for people with dementia and family carers?-A systematic review.

Objectives: To identify published evidence on person-centered outcome measures (PCOMs) used in dementia care and to explore how PCOMs facilitate shared decision-making and improve outcomes of care. To build a logic model based on the findings, depicting linkages with PCOM impact mechanisms and care outcomes.

Design: Mixed-methods systematic review.

COVID-19: Impact on Pediatric Palliative Care.

Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations.

Objectives: To explore the impact of the COVID-19 pandemic and lockdowns on this population.

Methods: Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes.

Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review.

Background: Advance care planning is important for people with advanced cancer. Family involvement in advance care planning may be instrumental to achieving goal-concordant care since they frequently become surrogate decision-makers.

Aim: To examine components, contexts, effects and linkages with intended outcomes of involving family members in advance care planning.

Managing clinical uncertainty in older people towards the end of life: a systematic review of person-centred tools.

Background: Older people with multi-morbidities commonly experience an uncertain illness trajectory. Clinical uncertainty is challenging to manage, with risk of poor outcomes. Person-centred care is essential to align care and treatment with patient priorities and wishes.

Preferences and priorities to manage clinical uncertainty for older people with frailty and multimorbidity: a discrete choice experiment and stakeholder consultations.

Background: Clinical uncertainty is inherent for people with frailty and multimorbidity. Depleted physiological reserves increase vulnerability to a decline in health and adverse outcomes from a stressor event. Evidence-based tools can improve care processes and outcomes, but little is known about priorities to deliver care for older people with frailty and multimorbidity.