UHI Millennium Institute and The University of Aberdeen working in partnership

ESRC Engaging Local Authorities Scheme

Building Capacity for Evidence Informed Practice in Rural and Remote

Island Social Service Delivery

UHI Millennium Institute and The University of Aberdeen working in partnership

Placement Two Aims

– To exchange knowledge and skills on community engagement methods

– To learn new knowledge and skills about engaging people with dementia and their carers

– To transfer knowledge into practice in week two of placement

UHI Millennium Institute and The University of Aberdeen working in partnership

Overview of Week

• Policy context – the ‘big picture’• Lessons from the literature• Methods used in research with people with

dementia• Methods used by engagement

practitioners• Personal experience of engagement

practice• Matching methods to context

UHI Millennium Institute and The University of Aberdeen working in partnership

Levels of engagement: Arnstein’s Ladder of Citizen Participation (1969)

Alternatives include:

Wilcox’s ladder (1994)

Burns’ ladder (1994)

Choguill’s ladder (1996)

Problems include:

- Simplistic

- Assumes participation = power

- Hierarchical

- Different levels appropriate at different times

UHI Millennium Institute and The University of Aberdeen working in partnership

• Community Development (Arnstein) 50’s and 60’s

• UN support, WHO Alma Ata Declaration (1978)

• Consumerism – 80’s and 90’s

• Democratic participation/representation – 90’s to today

• Policy

The Story of Community Engagement

UHI Millennium Institute and The University of Aberdeen working in partnership

Community Engagement Literature

• Patient Focus and Public Involvement (2001)• Better Health Better Care (2007)• Delivering for Remote and Rural Healthcare (2008)• All Our Futures: Planning for a Scotland with an Ageing

Population (2007)• Talking the same language (Healey, 2009)• Using a ruler to measure a sphere (Boutillier et al, 2001)• Remote Service Futures Report (2010)• Toolkits including: Age Concern England Involving Older

People Partnership Toolkit or Age Concern Cymru EngAGE Toolkit (2007)

UHI Millennium Institute and The University of Aberdeen working in partnership

Engaging People With Dementia

• How literature search carried out

• Findings from the research studies

• Guidance on implementing engagement

UHI Millennium Institute and The University of Aberdeen working in partnership

Literature Search

• Electronic resources of UHIMI, Stirling and general web searching

• Creative use of key words, e.g ‘listen’;’voice’; ‘hear’; ‘perspective’

• Policy literature; ‘How To’ guides; research studies

• A ‘selection’ not comprehensive list

UHI Millennium Institute and The University of Aberdeen working in partnership

Main Themes

• Impact of ‘personhood’ and research

• It’s very possible but challenging

• Still in early stages – methods development needed

• Tailor methods to individual and environment

• Communication & ethical practice

• Resource intensive

UHI Millennium Institute and The University of Aberdeen working in partnership

Ethical Issues

• Central to dementia practice• Boundaries between involvement and research• Consent

– Capacity– Family members– Process consent

• Diagnosis• Confidentiality • Protect against adverse response• Dealing with evidence of abuse/unacceptable

practice

UHI Millennium Institute and The University of Aberdeen working in partnership

Data Collection Methods

• Questionnaires– unlikely to be successful with pwd

• Interviews– face to face/telephone; informal

• Focus Groups– suitable for some pwd, for some topics

• Observation– From DCM to more informal approaches

• Diaries/Patient Stories• Documentary analysis – e.g. case files

UHI Millennium Institute and The University of Aberdeen working in partnership

Issues About Data & Analysis

• Good communication essential– Language, time, pace, prompts, non-verbal, varying

capacity

• Flexibility and creativity required• Reliability and validity issues

– Internal/external facilitation; repeated engagement, triangulation of sources, impact of setting

• Focus on attitudes, experiences, feelings– not facts and figures

UHI Millennium Institute and The University of Aberdeen working in partnership

Issues About Data & Analysis

• Establishing and ending relationships• Managing behaviour

– in groups, emotions, idealized accounts, silence

• Creating a safe context– Familiarity, gatekeepers, diagnosis, reflective

practice/support

• Practicalities– Recording, testing, appointments etc

• How to interpret metaphors, stories, non-verbal behaviour

UHI Millennium Institute and The University of Aberdeen working in partnership

‘Dimensions’ of Involvement

• Values and Principle– Personhood, reciprocity, social inclusion

• Purposes and Aims– Personal benefits, decisions, improvements, attitudes

• Models– Power, consumerist, rights, whose agenda?

• Organisational Level• Activities and Methods

– Individual, group, participation in org processes, collective action, advocacy

(Cantley et al (2005) Listen To Us!)

UHI Millennium Institute and The University of Aberdeen working in partnership

Levels of Influence

IndividualCare

International

Regional &NationalPolicy & Planning

Inter-AgencyPlanning &

Development

OrganisationWide Practice

Single ServicePractice

Views of People withDementia

Cantley et al (2005) Listen To Us!

UHI Millennium Institute and The University of Aberdeen working in partnership

Objectives, Methods & Techniques

Service Development Objectives Methods and Techniques(Killeen J (2001) in Cantley (ed) A Handbook of Dementia Care)

Identify gaps in services for strategic plan/

locality plan

Meetings with user groups/support groups/panels using semi-structured interviews/questionnaires, tape-recorders, visual aids

Identify priorities for development for strategic plan/locality plan

Semi-structured discussion with individuals, small groups, peer groups

Use of visual aids

Improve responsiveness of current services Conversational; semi-structured questionnaires.

Use of visual aids

Improve hands-on quality of care Feedback from individual service users via the service delivery system; input to training sessions

Monitor services and quality e.g. inspection Membership of inspection team with ‘buddies’; carer membership of team; feedback on services from individuals and groups e.g residents groups

Involvement in service management Formation of formal organisation managed by carers; representation on management committees by people with dementia

UHI Millennium Institute and The University of Aberdeen working in partnership

Key Issues For Managers

• Leadership • Involving range of voices of pwd• Keep ethical practice at forefront• Commit resources to support pwd, carers and

staff• Manage involvement of both pwd and carers• Value views of pwd and provide feedback• Balance organisational agendas with issues

important to pwd• Draw on experts but support staff to learnCantley et al (2005) ‘Listen to Us’