id : NIHR204992

award_type : Research

award_title : Understanding and optimising hospital outpatient services for people living with dementia: an ethnographic and intervention development study

award_amount : 249744

award_amount_disp : 249,744.00

app_plain_english_summary : Background 750,000 people live with dementia (PLWD) in England and around 90% have one or more additional health conditions (such as heart disease, kidney disease or diabetes). They regularly use hospital outpatient services, but little research has explored their experiences of using these services. Studies that do suggest PLWD experience many challenges, including difficulties accessing, understanding and making decisions about their care. Aims The study aims to: Explore experiences of outpatient services for PLWD and their families, including examples of good practice and potential improvements Design and test approaches to improve outpatient services for PLWD and their families Study plans The study will have two phases: Phase 1 Researchers will accompany up to 20 PLWD and their families to hospital outpatient appointments to observe what happens and talk about their experiences. Interviews and conversations with them, and with up to 20 outpatient staff, will further explore views on current care, what works well and potential improvements. The data will be analysed to identify ways outpatient care could be improved. Alongside this work, a literature review will identify studies and tools on improving inpatient care for PLWD to further understanding of approaches that might work in outpatient services. Phase 2 6-8 workshops with PLWD, families and outpatient staff will use the Phase 1 findings to co-design (develop together) ways to improve outpatient care for PLWD. The research team will turn these ideas into a toolkit for improving care. Two NHS outpatient departments will try out the toolkit to see how well it works and whether any changes are needed. Interviews and observations with up to 16 PLWD, families and staff in those departments will explore how well the toolkit works. The findings from Phase 2 will be analysed and discussed in a final workshop to determine how well the toolkit works, to agree any changes needed, and to develop recommendations for improving outpatient care for PLWD. Outputs The main outputs will be: A toolkit and recommendations for improving outpatient care for PLWD (ready for further testing in a bigger study) Resources for PLWD, families and outpatient staff (including advice booklets/summaries/videos/a webpage) setting out ways PLWD can be supported in outpatient departments Research articles and presentations at conferences and to NHS staff PPI A group of four PLWD and relatives, and two groups of PLWD and relatives from under-represented groups, helped develop the study plans. They highlighted the study s importance, sharing variable experiences of outpatient care and made valuable amendments to the study, PPI and accessibility plans. Their input will continue throughout the study. Regular PPI meetings at key time points will maximise their input, supported by three people with experience of involving PLWD and families in research.

app_abstract : Background There are 750,000 people living with dementia (PLWD) in England, and around 90% have one or more comorbidities (such as heart disease, kidney disease or diabetes). They regularly use hospital outpatient services and limited existing evidence suggests they experience many challenges when doing so, including difficulties accessing, understanding and making decisions about their care. No interventions have been developed to optimise outpatient care for PLWD and many aspects of existing inpatient-focused interventions are not applicable to outpatient settings. Aims To explore experiences of outpatient services for PLWD, families and staff, including examples of good practice and potential improvements To co-design and feasibility test an intervention to improve outpatient care for PLWD and their families Study plans The study will have three stages: Stage 1a Ethnographic observations, conversations and interviews with 16-20 PLWD, families and staff in six outpatient departments will identify experiences of, and potential improvements to, outpatient care for PLWD. Framework analysis will be used to identify potential intervention components, barriers, facilitators and impacts. Stage 1b A scoping review of existing studies and tools on improving inpatient and outpatient care for PLWD will identify potential components, outcomes and evaluation approaches for the new intervention. Output: A draft intervention development framework populated by Stage 1a and 1b findings detailing candidate intervention components and features. Stage 2 4-6 co-design workshops over 5 months with PLWD, families and outpatient staff (6-8 per participant group) will use the Phase 1 findings to develop a multi-component toolkit for improving outpatient care for PLWD. Careful planning will maximise opportunities for PLWD and people from underserved populations to participate. Output: An evidence-based, co-produced intervention ready for feasibility testing. Stage 3 Implementation and initial feasibility testing of the intervention will occur in two NHS outpatient departments from 1a over a 5-month period. Interviews, observations and conversations with 14-16 PLWD, families and staff will explore acceptability and feasibility. Framework analysis will examine intervention implementation, acceptability, practicality and impacts. The Stage 3 findings will be discussed in a final co-design workshop, and with PPI and steering groups, to agree any refinements required, finalise the intervention design, and develop recommendations for practice and future evaluation plans. Overall outputs The main outputs will be: A co-designed practice improvement intervention (ready for future wider-scale evaluation) and practice recommendations for improving outpatient care for PLWD Resources for PLWD, families and outpatient staff (including advice booklets/summaries/videos/a webpage) setting out ways PLWD can be supported in outpatient departments Practitioner and academic journal articles and conference presentations PPI PPI consultations with a group of four PLWD/family members and two groups of PLWD/families from under-represented groups inputted into the study plans. They highlighted the study s importance, shared variable experiences of outpatient care and suggested valuable amendments to the study, PPI and accessibility plans including plans to ensure diverse samples at each stage. Their input will continue throughout the study. Regular PPI meetings are planned at key time points to maximise their input, supported by three people with PPI experience with PLWD and their families.

research_type : Undefined

programme : Research for Patient Benefit

funding_stream : Research for Patient Benefit

award_status : Contracted

programme_stream : Researcher Led

contracting_org : Leeds Teaching Hospitals NHS Trust

centre : CCF

contracting_org_title : Contracting Organisation

start_date : 2024-03-01T23:59:59.000+0000

end_date : 2025-12-29T23:59:59.000+0000

lead_investigator_title : Chief Investigator

lead_investigator_name : Dr Rachael Kelley

lead_investigator_orcid : 0000-0002-8838-0313

joint_lead_applicant_name : Professor Claire Surr

joint_lead_applicant_orcid : 0000-0002-4312-6661

co_investigator_name : Dr Melanie Handley,Dr Nicky Taylor,Dr Sean Ninan,Miss Tracey Shorthouse,Mrs Elizabeth Milner,Professor Anne-Marie Bagnall

co_investigator_orcid : 0000-0002-8037-5042,,,,,0000-0003-1512-0833

award_website :

funder : NIHR (non-ODA)

jl_rep_title : Journals Library Report

highlighting :

full_contracting_org : Leeds Teaching Hospitals NHS Trust

full_co_investigator_name : Dr Melanie Handley,Dr Nicky Taylor,Dr Sean Ninan,Miss Tracey Shorthouse,Mrs Elizabeth Milner,Professor Anne-Marie Bagnall

_version_ : 1780177597892657200

start_year : 2024

full_lead_investigator_name : Dr Rachael Kelley

full_joint_lead_applicant_name : Professor Claire Surr