ORCHARD: optimising hearing-related communication for care home residents with dementia

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1 ORCHARD: optimising hearing-related communication for care home residents with dementia Melanie Ferguson Note: some unpublished data have been removed to avoid publishing conflicts BAA NE regional meeting

2 Background: sizeable problem Hearing loss years: 41.5% men and 38.8 % women have hearing loss 80+ years: 80 % have hearing loss 70-90% in carehomes have hearing loss (Akeroyd et al. 2014; Davis, 1995; Jupiter, 2012) Dementia and hearing loss Hearing loss associated with risk of dementia Mild HL 2x, moderate HL 3x severe HL 5x Accelerated structural change to brain (atrophy) (Lin, 2011: Lin 2014) > 300,000 have dementia and significant hearing loss likely to double within the next 20 years (Jorgensen, 2014; Kricos, 2006)

3 Hearing loss associated with increased risk of dementia Mild HL = 2x risk of dementia Moderate HL= 3x Severe HL = 5x Causality? HL causes dementia? Cognitive impairment causes HL? (Lin et al, 2011)

4 Problems in carehomes Hearing aids supplied but often not used, mislaid or get broken can upset families and residents Resident may not tolerate hearing aids or understand what it s for Resident may not know how to use hearing aids Care staff may lack knowledge and skills to support hearing aids and to communicate effectively Comorbid conditions e.g. dementia, can affect staff attitudes and approach Care staff may not have English as their first language Carehomes are noisy! (Cohen-Mansfield & Taylor, 2004; Gooberman-Hill & Pryce, 2012; Hyer et al, 2005; Lievesley et al, 2011)

5 Managing hearing loss and dementia in carehomes Both hearing loss and dementia are common in carehomes formidable barrier to communication excessive communication disability or communication vulnerability problem behaviour such as aggression Disproportionate number of residents affected by hearing loss difficult to know what to do for the best (Slaughter et al, 2014) (Yamada et al, 2014) No obvious single intervention Few published studies

6 Triple whammy Managing hearing loss in care homes is complex Testing hearing in dementia is difficult Hearing loss is complex Dementia is complex Carehomes are complex triple whammy

7 Realist synthesis a theory-driven review approach that applies real-world views to the findings from primary studies to answer a research question emphasis on relationships between Context, Mechanism & Outcome (CMO) In short, it is a powerful means of bringing together mixed, complex data to explore the questions of: What works for whom? Under what circumstances? Why? When? To what extent? How? (Pawson, 2006, 2013)

8 Realist vs Systematic Review Type of Intervention Complex REALIST REVIEW Simple; discrete SYSTEMATIC REVIEW Aim/ Focus EXPLANATORY- how x works, in what contexts, JUDGEMENTAL- how much does x,y,z Improve health for whom Rigor Very Rigorous Very Rigorous Relevant Types of Evidence Includes a wide range of research and nonresearch (i.e., both quantitative and qualitative) RCTs ideal. Mostly quantitative research on effectiveness (e.g., controlled & uncontrolled before & after studies, interrupted time series..) Evidence Source Method Peer reviewed journal literature, policy reviews, stakeholder analysis, focus groups, gray literature (reports, conference proceedings). Theory- driven synthesis: deconstructs intervention into component theories. Context data retained, basic theory is refined concerning applicability in context Peer reviewed literature (finite set of data) Statistical synthesis/ Meta-analysis: data from individual studies are combined statistically and then summarized Usefulness How to make an intervention most useful Demonstrates which intervention has largest or smallest effect

9 ORCHARD Research question What approaches, aids and adaptations work best for people with dementia living in care homes with hearing loss? Aim To understand factors that contribute to the successful management of hearing-related communication with people with dementia in care homes Research team: Tom Dening, Mel Ferguson, Geoff Wong, Dawn-Marie Walker, Stevie Vanhegen

10 Objectives Using Realist Synthesis to describe how, why, to what extent, for whom and in what circumstances can hearing loss be managed in people with dementia in care homes Clarify the nature of good practice Suggest potential interventions to improve good practice and recommendations for implementation Outline areas of possible future research on interventions to improve hearing-related communication in care homes.

11 Context expert group crucial role in realist review Includes practitioners with relevant expertise care home staff members of the public, mainly relatives of people with dementia and/or hearing impairment or with relatives in care homes Meets 7 times over one year

12 Literature search Databases E.g. Medline, Embase, CINAHL Search for Interventions for promoting communication and HA use How are these relevant to those dementia How have these been used in PHL and PwD in carehomes In: Journal articles, grey literature, published guidelines, conference proceedings and websites, clinical trials websites to use snowballing

13 Research plan Step 1: Locate existing theories - informal searching - input from project management group - develop initial programme theory Step 2: Search for evidence (with info specialist input) - develop, pilot and refine search - Screening Refined prog theory - Input context experts - Further search Step 5: Synthesis of the Evidence + draw conclusions Step 4: Data extraction - Spreadsheet - NVivo Step 3: Article selection - Relevance - rigour

14 Research plan outputs Step 5: - Synthesis of the evidence Draw conclusions Provide recommendations With context expert group input - Research - Best practice

15 Knowledge of carehome staff What have we done already?

16 2. Evaluation: Clinically registered RCT (N=203) Take-up and adherence Self-management HA knowledge & skills Take-up = 78% 94.3% watched all RLOs 2+ times = 49.9% Re-use suggested selfmanagement Better knowledge on HAs and communication & HA handling skills HA use Valued by users Health economics Greater use (GHABP) in suboptimal users Rated RLOs as highly useful (9/10) Improved confidence Preferable to written info RLOs were a very effective and cheap healthcare intervention (Ferguson et al, Am J Aud 2015; Ear Hear, 2016)

17 Waiting room Demo clips, flyers N= >28000 views

18 residential carehome staff n = 25 care home staff n = 3 homes 84% thought correct use of hearing aids was extremely important 72% assisted all residents with hearing aids and maintenance 20% half or more 8% half or less None of the carehomes had sought or reported ever provided any training (Ferguson & Rocks, 2013)

19 Training residential carehome staff n = 25 care home staff n = 3 homes Knowledge of hearing aids and communication Significant pre-post improvement p <.001 d = 3.6 This should be made mandatory at induction with annual refresher sessions Practical hearing aid skills Significant pre-post improvement p <.001 d = 3.3 Awareness of hearing aids has definitely gone up with all of us

20 RLOs for residential carestaff Hearing aids often drop off the radar. We shouldn t be waiting for a crisis This project has changed the things I m doing and saying on a daily basis (McShea et al, in prep)

21 Development of a new social participation outcome measure A reliable and valid 19-item measure of Social Participation Restrictions Questionnaire was developed (SPaRQ) (Heffernan et al, IJA, 2016) Validation of brief 5-item social isolation questionnaire self-efficacy for social participation questionnaire

22 Developing a mental health and hearing loss network Mental health* and hearing loss across the lifespan To establish an interdisciplinary collaboration of People with lived experience of hearing loss and/or mental health Carers and family members Academics and healthcare professionals Charities To promote dialogue across stakeholders (MH and HL) Identify research priorities Identify best practice Raise awareness of the interplay between MH and HL Nicola Wright & MF (leads), Tom Dening, Mel Gregory, Sarah Treadwell-Baker Sarah Bent, Lynzee McShea, Vicky Sadler, Charlotte Rogers + MH equivalents

23 Summary ORCHARD (Optimising hearing-related Communication for Care Home Residents with Dementia) Takes a realist synthesis approach to understanding communication in people with hearing loss and dementia in carehome residents What works for whom? When? Under what circumstances? To what extent? Why? How? To identify best practice and research priorities including which interventions and how to measure them (outcomes) Training of carehome staff in hearing-related matters is essential

24 Thanks to NHBRU Eithne Heffernan, David Maidment, Alex Barker, Lynzee McShea ORCHARD Tom Dening, Stevie Vanhegan, Geoff Wong, Dawn-Marie Walker Nicola Wright

25 Summary ORCHARD (Optimising hearing-related Communication for Care Home Residents with Dementia) Takes a realist synthesis approach to understanding communication in people with hearing loss and dementia in carehome residents What works for whom? When? Under what circumstances? To what extent? Why? How? To identify best practice and research priorities including which interventions and how to measure them (outcomes) Training of carehome staff in hearing-related matters is essential?

Currently undergoing development (mrlos)

28 Currently undergoing development (mrlos) Patients Communication Partners 1 Public Focus groups suggested that CPs would value information relevant to them Communication tactics What is hearing loss, and the consequences of HL? Psychosocial aspects of hearing loss

29 CP m-rlo content: evidence-based What s new and relevant to CPs? Systematic review Literature metasynthesis (Barker, Leighton, Ferguson in review) Users voice - focus groups Communication tactics Expectations Acclimatisation Users voice - video footage

30 Future development early 2017 Aim: to develop theoretically-driven m-rlos - tailored to the needs of the individual - incorporate greater interactivity to enhance learning - to include a means to self-evaluate and monitor progress Individualised m-rlos - repurpose C2Hear into granular segments (e.g.1min) - COM-B model* (theoretical underpinning) - think aloud analysis (ecological, user input) Public (*Coulson, Ferguson, et al, IJA, 2016)

Hearing aid users: Phase 1: individualise

31 Hearing aid users: Phase 1: individualise Theoretical underpinning COM-B model Think Aloud Analysis User involvement Domains e.g. physical skills reinforcement capabilities Data tags e.g. physical skills reinforcement capabilities Individualisation

Patients Communication Partners 1 1 Public Other

32 Suite of resources: towards an mhealth self-management programme Individualise Interactivity Self-evaluation Patients Communication Partners 1 1 Public Other languages UK: English not first language Non-audiological HCP

PROSPERO International prospective register of systematic reviews

PROSPERO International prospective register of systematic reviews Health behaviour change in the community pharmacy setting: a realist review Aikaterini Kassavou, Liz Steed, Carol Rivas, Trisha Greenhalgh,