Conectar
Avoidable and unfair variation in access to palliative care exists for different groups of people and communities. Primary and community care teams deliver most palliative care and care to people at the end of life at home but the quality of care provided is variable. This is an under-researched area and receives little attention in service design and policy. This study will investigate the key contexts, resources and components required for an integrated approach to palliative care to deliver improved and more equitable outcomes for patients and carers.
This mixed-methods study adopts a realist methodological approach, and comprises four work packages:
A multi-perspective mixed-methods study to understand patient preferences and priorities in palliative care, prioritising recruitment of patients and family members/carers from areas of socioeconomic deprivation. Data collection will comprise: (1) qualitative interviews, (2) review of patient case notes and (3) a discrete choice experiment. Realist analysis will result in the development of theory based on the identification of the key contexts and underlying mechanisms required to achieve beneficial outcomes through an integrated approach to palliative care.
A realist evaluation of existing integrated models of palliative care will involve theory-refining interviews and theory-consolidating focus groups with professionals working in three different service areas.
Dynamic simulation modelling of the healthcare resources needed to deliver the proposed integrated approach, ensuring quality and equity.
The theoretical and economic modelling will be tested out at two expert stakeholder workshops to determine the key enablers to implementation in practice.
The study design was informed by patient and public involvement (PPI) with 16 patients and members of the public from diverse and socioeconomically deprived communities for 12 months in a National Institute for Health and Care Research-funded palliative care partnership. PPI will be continuous throughout the study, prioritising inclusivity.
Ethical approval was obtained from the East of Scotland Research Ethics Service Research Ethics Committee 2, on 20 August 2025 (IRAS ID: 354755) and Health Research Authority approval on 1 October 2025. The targeted dissemination strategy will include outputs and resources for key audiences including patients and families, professionals in primary care and specialist palliative care and service commissioners. The results will inform service delivery to reduce inequities and optimise the use of finite resources to maximise impact.
The study is registered with the ISRCTN UK Clinical Study Registry: https://www.isrctn.com/ISRCTN61092011.
To explore the pathway of care for people post hip fracture and define what is important for person-centred recovery.
Qualitative design using interpretive descriptive methodology, guided by the Health Empowerment theoretical framework.
Semi–structured interviews were conducted from March to October 2021, focussed on the lived experience of recovery post hip fracture. Thirteen participants were interviewed. Five people post hip fracture; four advanced practice nurses and four practice nurses. Data were analysed using thematic analysis.
Fragments of hip fracture care was a major theme describing a disconnected pathway following discharge from hospital, and exposed the gap between recommendations for follow up and implementation. Gaps highlighted the need for a key contact clinician to support care coordination, use of individualised care plans, clinical pathways for practice nurses, and follow up post hip fracture.
A disconnected recovery pathway was found from the lived experience of hip fracture. Findings highlight opportunities to develop integrated person-centred models of care that empower patients to self-manage their recovery. Implementation of an empowered coordinated pathway with a shared care approach integrates consistent care across the whole patient journey.
Identified gaps from a fractured recovery formed key components to support a connected care pathway post hip fracture. Linked by the overarching construct of Health Empowerment, policy and practice development embedding a connected pathway within nurse-led models of care should be considered.
Consolidated Criteria for Reporting Qualitative Research.
No Patient or Public Involvement.
This study explored what was important for recovery post-hip fracture. A fragmented recovery pathway was identified that highlighted key components for improvement. Research supports policy and practice development for nurse-led models of care with an empowered approach post hip fracture.
To explore patient and public views and experiences of health professional access to patient health records and advance care planning information to support care at the end of life.
A cross-sectional national online survey of patients and the public using a convergent-parallel approach.
The survey was distributed across the UK by Compassion in Dying and promoted via newsletters and social media channels of the Professional Records Standards Body and NHS England’s digital workstream network. These partners were purposively selected for their active involvement in end-of-life care, including hospices, clinicians and related charities.
A total of 1728 participants from 103 UK counties responded, including people with a terminal condition (n=33), with long-term condition (n=442), who provide or have provided care to a person with a long-term or terminal illness (n=229) and who identified as healthy and interested in planning for the future (n=1024).
Both quantitative data (multiple-choice responses and numerical ratings) and qualitative data (open-ended comments) asking about experiences and views of access to their health and advance care planning information to support their care at the end of life.
Confidence that recorded care preferences would be accessed when needed was low for carers (median=2, IQR 1–4) and moderate for patients (median=3, IQR 1–4). Four themes derived from free-text responses included (1) experience of sharing health information; (2) preparation, communication and understanding; (3) concerns, unknowns and assurance seeking; and (4) preserving dignity and respect: understanding individual contexts.
Respondents acknowledged the opportunity for digital systems to enable access to health and advance care planning information but expressed doubts that professionals would retrieve it when needed, citing past failures. Confidence in record accuracy could be strengthened by patient and carer access. Future research should examine whether such access improves alignment of care with patients’ wishes.
To develop a person-centred nurse-led model of care framework to empower people post hip fracture.
Modified e-Delphi study.
A Modified e-Delphi study seeking expert opinion from people with the lived experience of hip fracture and clinicians was implemented. Content experts consisted of 17 nursing and medical clinicians and four people with the experience of hip fracture.
Study found > 70% consensus on all 20 statements rating the importance and feasibility of care components in the Modified e-Delphi survey. Themes developed from content analysis of expert free text responses comprised: Relationships support person-centred care; Value of a Specialist Hip Fracture Nurse; Prioritising is key to positive outcomes. PREPARE—Empowering People Post Hip Fracture: A Conceptual Framework for a nurse-led model of care was developed from study findings, highlighting key principles: person-centred care; evidence-informed practice; Health Empowerment; organisational governance; follow-up and evaluation, constituting this framework.
This study presents PREPARE—Empowering People Post Hip Fracture: A Conceptual Framework for a nurse-led model of care. PREPARE presents a structured approach to empowering people post hip fracture, outlining the aim and context in which the model of care is intended. It highlights an integrated, shared, coordinated approach to the care of people post hip fracture. Shared care empowers people and their support person to effectively manage their recovery journey and safely remain supported in the community.
PREPARE outlines a structured framework to support nurse leaders in implementing nurse-led models of care for people post hip fracture. There is an opportunity to empower nurse leaders and patients to support the recovery journey through education encompassing this person-centred holistic framework.
To our knowledge this is the first study to develop a conceptual framework for a nurse-led model of care to empower people post hip fracture. This model highlights opportunities for an integrated shared, coordinated approach to the care of people post hip fracture. PREPARE—Empowering People Post Hip Fracture: A Conceptual Framework for a nurse-led model of care, offers a structured approach for localised health service development of person-centred nurse-led empowerment models of care.
DELPHISTAR—Delphi studies in social and health sciences—Recommendations for an interdisciplinary standardised reporting.
The experiences of people post-hip fracture, and clinicians were elicited to inform the PREPARE Conceptual Framework.
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