scholarly journals SENSE-Cog Asia: A Feasibility Study of a Hearing Intervention to Improve Outcomes in People With Dementia

2021 ◽  
Vol 12 ◽  
Author(s):  
Saima Sheikh ◽  
Sehrish Tofique ◽  
Nosheen Zehra ◽  
Rabia Amjad ◽  
Maham Rasheed ◽  
...  
Keyword(s):  
Capacity Building ◽  
Feasibility Study ◽  
Hearing Aids ◽  
Cultural Adaptation ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Structured Interviews ◽  
Support Intervention ◽  
People With Dementia ◽  
Home Based

Background: There are few evidence-based non-pharmacological interventions adapted for people with dementia (PwD) in lower- and middle-income countries (LMIC). Thus, there is value in culturally adapting existing interventions from other settings. One such intervention for PwD involves hearing rehabilitation, which may improve dementia-related outcomes.Objective: To culturally adapt and evaluate the feasibility and acceptability of a multi-faceted hearing support intervention to enhance quality of life in PwD for a LMIC setting, Pakistan.Design: This was a study in three phases: (1) training and capacity building to deliver the study, including Patient and Public Involvement (PPI); (2) cultural adaptation of the intervention; and (3) delivery of a single-group feasibility study with a pre-test post-test design.Setting: Home-based intervention, in two cities of Pakistan.Participants: Adults aged ≥ 60 with mild-moderate dementia and uncorrected or partially corrected hearing impairment, and their study partners (n = 14).Intervention: An adapted hearing support intervention (HSI) comprising a full assessment of hearing function, fitting of hearing aids, and home-based support from a “hearing support practitioner.”Outcomes: Ratings of the feasibility of the study procedures, and acceptability/tolerability of the adapted intervention were ascertained through questionnaires, participant diaries, therapist logbooks and semi-structured interviews. A signal of effectiveness of the intervention was also explored using a battery of dementia-related outcome measures.Results: Following cultural adaptation and capacity building for study conduct and delivery, we successfully implemented all intervention components in most participants, which were well-received and enacted by participant dyads. Acceptability (i.e., understanding, motivation, sense of achievement) and tolerability (i.e., effort, fatigue) ratings and safety of the intervention were within a priori target ranges. Recruitment and retention targets required improvement, due to the COVID-19 pandemic outbreak, as well as the lack of a clear clinical diagnostic pathway for dementia in both sites. Areas for future modification were clearly identified, including: the assessment/delivery logistics circuit; procedures for arranging visits; communication among referring clinicians and the study team.Conclusion: This is the first study in a LMIC of sensory enhancement to improve dementia outcomes. Positive feasibility, acceptability and tolerability findings suggest that a full-scale effectiveness trial, with certain modifications is warranted.

scholarly journals Supporting people with dementia and their family caregivers through a home‐based, dyadic, multisensory stimulation intervention: A feasibility study

2020 ◽  
Vol 16 (S7) ◽  
Author(s):  
Patrick Pui Kin Kor ◽  
Clare Yu ◽  
Justina Yat Wa Liu ◽  
Daphne Sze Ki Cheung ◽  
Rick Yiu Cho Kwan ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Feasibility Study ◽  
Multisensory Stimulation ◽  
People With Dementia ◽  
Home Based

scholarly journals Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)

2017 ◽  
Vol 22 (6) ◽  
pp. 723-729 ◽  
Author(s):  
Dianne Gove ◽  
Ana Diaz-Ponce ◽  
Jean Georges ◽  
Esme Moniz-Cook ◽  
Gail Mountain ◽  
...  
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
People With Dementia

scholarly journals The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Alison M. Aries ◽  
Paul Bailey ◽  
Susan M. Hunter
Keyword(s):  
Feasibility Study ◽  
Portfolio Management ◽  
Public Involvement ◽  
Monitoring And Evaluation ◽  
Patient And Public Involvement ◽  
Grant Proposal ◽  
Added Value ◽  
Daily Diaries ◽  
Working Together ◽  
Participant Information

Abstract Background Patient and public involvement (PPI) in research has increased steadily over the last two decades and is now both expected and appropriately resourced by many funding bodies, including the National Institute for Health Research (NIHR). However, PPI in research occurs in many different capacities and numerous frameworks exist for reporting or appraising patient involvement activities. The aim of this article is to describe processes involving PPI contributions to an NIHR-funded mixed-methods feasibility study (MoTaStim-Foot). Details of PPI advisors’ input, from initial identification and prioritisation of research ideas, to research delivery and dissemination, are discussed. Methods Extensive PPI for MoTaStim-Foot is reported, with consideration of Research Design Service (RDS) advice for PPI for research, involving identifying and prioritising: design; grant proposal development; undertaking/managing research; analysing and interpreting; dissemination; implementation; monitoring and evaluation. Two PPI workshops were undertaken; success in meeting UK standards for public involvement was audited against specific success criteria by two researchers, with discussion and consideration regarding how well our PPI achieved inclusive opportunities, working together, support and learning, governance, communications and impact. How PPI can be improved for future trials was also considered. Although the advantages of PPI for researchers were considered, the benefits for PPI advisors were also analysed. Results UK standards for public involvement were achieved, along with seven relevant research processes suggested by the RDS. PPI advisor contributions: informed study design; contributed to successful funding; enhanced trial delivery by informing participant information sheets and daily diaries; added value through undertaking note-taker roles in focus groups and helping to analyse focus group transcripts; and assisted in dissemination. However, benefits were mutual with PPI advisors reporting feeling valued and respected, a sense of pride with renewed confidence and purpose in life. Conclusions Importance and value of PPI, to researchers and patient advisors, have been highlighted, reinforcing the benefits of working in partnership with PPI advisors. Trial registration ISRCTN 13676183; Central Portfolio Management System ID 30449. Registered 02/01/2015, https://www.isrctn.com/ISRCTN13676183.

PP22  An exploration of the facilitators and barriers to paramedics’ assessment and treatment of pain in paediatric patients following trauma (EX-PAT)

2020 ◽  
Vol 37 (10) ◽  
pp. e10.3-e11
Author(s):  
Barry Handyside ◽  
Helen Pocock ◽  
Charles Deakin
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
Barriers And Facilitators ◽  
Prehospital Emergency Care ◽  
Structured Interviews ◽  
Cross Sectional ◽  
South Central ◽  
Paediatric Patients ◽  
Facilitators And Barriers ◽  
The Uk

BackgroundA cross-sectional service evaluation within South Central Ambulance Service (SCAS) revealed deficiencies in the assessment and management of paediatric patients’ pain resulting from trauma. This suggested a need for further work to identify facilitators and barriers to pain assessment and management amongst this patient group. Studies looking into the barriers and facilitators to paramedics’ assessment and management of paediatrics in pain have been conducted internationally and not solely in traumatic events. These studies are not transferable to the UK setting due to prehospital emergency care differences within these countries.MethodsThis study will utilise qualitative research methods.The study population will be qualified paramedics. In-depth semi structured interviews will be conducted using a guide developed from previous studies and refined at patient and public involvement events. The expected numbers of participants will be 12–15 but will continue to the point of data saturation. Thematic analysis of data will be performed using an open coding technique guided by Braun and Clarke’s six step framework. Once complete member checking will take place with each participant.ResultsIt is anticipated that both positive and negative aspects of paramedics’ role during these incidents will be identified. Previous literature has identified support from colleagues, interaction with parents, and the ability to alleviate pain as facilitators. Barriers have included current educational practices, lack of exposure, guidelines, the prehospital environment, difficulty in assessing young children and difficulty in providing pain relief. It is therefore likely that these themes may emerge but identification of UK-specific barriers and facilitators is anticipated.ConclusionsWith no previous study of this nature conducted before in the UK this could valuably inform the education and teaching provision of ambulance services and universities as well as a platform for policy makers and guideline producers to enhance the tools available to paramedics.

Research involving people with dementia: a literature review

2017 ◽  
Vol 21 (2) ◽  
pp. 107-114 ◽  
Author(s):  
Emma Rivett
Keyword(s):  
Literature Review ◽  
Research And Development ◽  
Design Methodology ◽  
Public Involvement ◽  
Small Body ◽  
Patient And Public Involvement ◽  
Ethical Considerations ◽  
Ongoing Research ◽  
Content Type ◽  
People With Dementia

Purpose The purpose of this paper is to review existing literature that addresses involving people with dementia in research, and how this can relate to involving people with dementia in research as co-researchers. Design/methodology/approach The approach takes the form of a literature review. Findings Despite a growing drive for patient and public involvement in research, people with dementia are often still excluded from many areas of research, and are rarely given the opportunity to act as co-researchers. Existing principles focussing on how people with dementia can effectively and safely be involved in research as participants (including ethical considerations, enabling participation, support for people with dementia and the involvement of family members and carers) can also be applied to enabling people with dementia to be actively involved with research as co-researchers. The benefits of involving people with dementia in research are also explored. Originality/value This paper adds to the small body of literature that addresses involving people with dementia in research as co-researchers, and advocates for ongoing research and development in this area.

scholarly journals Broadening diversity through creative involvement to identify research priorities

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Stephanie Tierney ◽  
Shoba Dawson ◽  
Anne-Marie Boylan ◽  
Gillian Richards ◽  
Sophie Park ◽  
...  
Keyword(s):  
South Asian ◽  
Information Needs ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Health Condition ◽  
Physical And Mental Health ◽  
People With Dementia ◽  
Research Prioritisation ◽  
Condition C

Abstract Background Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We tried using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods We contacted existing groups and organisations to reach people not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with a mental and physical health condition, c) of South Asian heritage. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss these pieces of art and the processes involved in their generation. Results From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) information needs and anxiety/guilt around accessing care for people with physical and mental health conditions, c) supporting discussion of women’s health issues in South Asian communities. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork helped them to feel that their voice had been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and producing a study. Conclusions We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future PPI, building on what we have learnt from the project described in this paper.

scholarly journals Broadening Diversity Through Creative Engagement in Research Prioritisation

2020 ◽  
Author(s):  
Stephanie Tierney ◽  
Shoba Dawson ◽  
Anne-Marie Boylan ◽  
Gillian Richards ◽  
Sophie Park ◽  
...  
Keyword(s):  
Mental Health ◽  
Information Needs ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Health Conditions ◽  
Physical And Mental Health ◽  
Mental Health Conditions ◽  
People With Dementia ◽  
Research Prioritisation

Abstract Background: Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We wanted to try out using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods: We contacted existing groups and organisations to reach people who are not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with mental health conditions, and c) from Black, Asian and Minority Ethnic backgrounds. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss the final pieces of art that were created, and the processes involved in their generation.Results: From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) supporting discussion of women’s health issues in South Asian communities, c) information needs, anxiety/guilt around accessing care and costs associated with this for people with a mixture of physical and mental health conditions. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork has helped them to feel their voice has been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and then producing a study. Conclusions: We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future public involvement and engagement, building on what we have learnt from the project described in this paper.

scholarly journals Individuals’ Decision to Disclose a Diagnosis of Dementia and the Development of an Online Empowerment Intervention

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 589-590
Author(s):  
Mauricio Molinari Ulate ◽  
Jem Bhatt ◽  
Jennifer Lynch ◽  
Katrina Scior ◽  
Georgina Charlesworth ◽  
...  
Keyword(s):  
Public Involvement ◽  
Adverse Reactions ◽  
Psychosocial Health ◽  
Patient And Public Involvement ◽  
Dementia Diagnosis ◽  
Factors Influencing ◽  
People With Dementia ◽  
Complex Process ◽  
Diagnosis Of Dementia

Abstract Learning to live with a diagnosis of dementia is a complex process. Many people affected by dementia choose not to disclose the diagnosis to others and avoid social activities due to fear of others’ adverse reactions. This in turn can limit their social participation and negatively affect their psychosocial health. A systematic review explored factors influencing the decision to disclose or conceal a dementia diagnosis to one’s social network, including individuals’ attitudes and experiences regarding this decision. The sixteen studies included reveal the complexity of this decision. Findings highlight the role of stigma and individuals’ wishes to remain ‘normal’, but also the need of explaining what has changed. Results were further discussed with people with dementia and informal caregivers as part of patient and public involvement. End users expressed their attitudes, needs, and wishes towards the design of an online empowerment intervention supporting disclosure decision-making in people affected by dementia.

OP338 Involving Patients In Research: Early Consultation Of Women To Improve Study Design And Investigate Trial Acceptability

2021 ◽  
Vol 37 (S1) ◽  
pp. 14-14
Author(s):  
Jamie Erskine ◽  
Alejandra Castanon
Keyword(s):  
Data Collection ◽  
Clinical Research ◽  
Feasibility Study ◽  
Public Involvement ◽  
Research Output ◽  
Patient And Public Involvement ◽  
English Summary ◽  
Ongoing Research ◽  
Consultation Group ◽  
Funding Application

IntroductionGaining the perspective of patients is invaluable in the design, management and reporting of research. As part of the process of facilitating clinical research into the effectiveness of a digital colposcope in a cervical cancer pathway, patients were involved from the outset.MethodsUsing funding made available by a Public Involvement Fund, a patient consultation group was established. The group's initial discussions informed the design of a feasibility study and funding application, which was submitted to the UK National Institute of Health Research (NIHR). A Patient and Public Involvement (PPI) representative was recruited and along with the consultation group, contributed to the ethical approvals for the study. The Patient Information Sheet and Consent Form were reviewed by the patients, to ensure readability, understandability and accessibility. The patient questionnaires and interview topics that are part of the feasibility study were also developed in conjunction with the PPI group, to make sure that women's concerns are being addressed in the research design and protocols.ResultsThe PPI consultation group's contributions helped strengthen the funding application and funding for a feasibility study was granted as part of the NIHR's Research for Patient Benefit funding scheme. Part of the grant will be used for training and reimbursement for time spent for the PPI representative. Data collection for the study is due to commence in the summer of 2021. The PPI group will be consulted at the beginning and end of the data collection period and will contribute to the data analysis and dissemination of the research output, including a Plain English Summary.ConclusionsInvolving patients greatly amplified the quality of the funding and ethical applications and will continue to benefit the ongoing research. Resources were widely available within the researcher's University and also through UK-wide schemes. Such resources are crucial and should be encouraged as part of all clinical research.

495 CONVERSATIONS ON LIVING & DYING: AN INTERVENTION TO INCREASE COGNITIVELY-ABLE, COMMUNITY-BASED FRAIL ELDERS’ ENGAGEMENT WITH ACP

2021 ◽  
Vol 50 (Supplement_2) ◽  
pp. ii5-ii7
Author(s):  
S Combes ◽  
K Gillett ◽  
C Norton ◽  
C J Nicholson
Keyword(s):  
End Of Life ◽  
Public Involvement ◽  
Behavioural Change ◽  
Patient And Public Involvement ◽  
Community Dwelling ◽  
Integrative Review ◽  
Structured Interviews ◽  
Support Person ◽  
Frail Elders ◽  
Health And Social Care

Abstract Introduction Advance care planning (ACP) can support person-centred end-of-life care by helping individuals articulate their end-of-life preferences. Frail elders’ vulnerability to deterioration makes ACP engagement particularly relevant; however, their engagement with ACP is uncommon. This study aimed to develop an intervention to increase ACP engagement with cognitively-able, community-dwelling frail elders. Methods Multiple methods were used to establish ACP barriers and facilitators: a systematic integrative review, modified e-Delphi survey (multidisciplinary health and social care professionals (H&SCPs) n = 73), and semi-structured interviews (frail elders n = 10, family members n = 8). A conceptual model, developed from the integrative review, underpinned data collection for the e-Delphi and interviews. Triangulation, including patient and public involvement, was then used to identify H&SCPs behaviours that needed to change and decide intervention content and implementation. The intervention was developed using behavioural change theory. Prototype refinement consisted of pre and post questionnaires, use of the intervention in practice, and focus groups (H&SCPs n = 26). Results The prototype intervention consists of a 3.5-hour training and education session for H&SCPs, supported by a toolkit. The intervention focuses on the relevance and experience of ACP for frail elders and ACP strategies H&SCP can use to encourage frail elders’ ACP engagement. Strategies include recognising the importance of decision-making in relationships and living well now, starting early, using an honest but gentle approach, and helping frail elders prepare for ACP conversations. Participants report that the intervention helps them think differently about ACP and encourages them to engage frail elders with ACP. Conclusions To our knowledge this is the first intervention underpinned by behaviour theory that focuses on supporting H&SCPs to engage community-dwelling, cognitively-able frail elders with ACP. Refinements, such as additions to the toolkit, have been suggested. However, H&SCPs appear to find the intervention acceptable, feasible, engaging, and useful in their practice.

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