1. Dr. Susan M. Lawlor Engaging service users 10 TH June 2009, Cork

2. Acknowledgements CSRI, UCC, HSE Ms. Helena O’ Connor, CNS, Forensic Risk Assessment Trainer Steljes Ltd; SMART

3. Why involve service users? Service users are experts Service users and providers often have very different viewpoints User involvement can be therapeutic Helping to shape services which affect them can also help to increase the confidence and self- esteem of users, as well as assist them in developing new skills.

4. Motivations for engagement- what will service users gain from engaging? patient satisfaction surveys to service users delivering peer support and training eliminating difficult language and jargon need to be physically listening to users patient information leaflets are developed with service users as opposed to without them. service users want providers to be physically and emotionally available; supportive; encouraging and reassuring; respectful; patient and attentive; committed to the needs of the individuals; trustworthy; reliable; friendly; emphatic and warm. develop skills such as assertiveness; equal opportunities; communication skills; group work and meeting etiquette further.

5. Service users and qualitative research Biomedical perspective versus personal experiences Step 1: Clarify perspectives and assumptions Step 2: Specify broad research questions Step 3: Pilot interview Step 4: In-depth interviews carried out Step 5: Focus- group interviews carried out Step 6: Semi- structured interviews carried out Step 7: Journaling of observations and notes during the in-depth interviews, semi-structured interviews and focus group interviews, and during informal conversations about mental illness Step 8: Transcribe data, immersion in data; reading and re-reading transcripts; noting significant data segments Step 9: Question, compare, and naming important data segments; sort and categorise into piles according to emerging themes; set aside data segments that represent categories that appear insignificant, or are interesting but are not relevant to the research question (open coding) Step 10: Examine and integrate propositions, develop conceptual framework and theoretical response to research question (selective coding) Step 11: Write up discussion, findings, and conclusions.

6. Interviewing techniques for engaging with users to empower them: Build a trusted relationship- users need to feel respected and understood Help users to explore and resolve any ambivalence Generally, the style used is a quite and eliciting one The tone of your voice is instrumental in eliciting answers from users Work with and for users as opposed to acting like their superior Explore their life experiences, morals, values and goals in order to develop a compatible working relationship with them Show emphatic understanding i.e. put yourself in their position Remain un-judgemental, un-critical, patient, and open- minded Acknowledge their fears, anxieties and concerns Develop future goals together and encourage them to have positive goals Build up their confidence by involving them in decision- making process Actively listen Present advice as neutral information

7. Ensuring active engagement: Allowing service users to be involved in any advisory group Providing them with notice and reminders of events Flexibility Ground rules for ‘voicing’ their opinions and experiences Benefits/ incentives to engage i.e. guest speakers, travel fares, food and drink Avoid empty promises- follow through on what you agreed on/ discussed Encourage service users who take on new challenges such as learning about meeting etiquette

8. Group Work Questions that need to be posed include: Which organisations are already working with you and how? Are there any local and/or national groups that should be involved? Where are the gaps? How will we include groups for young people, mental health, people with disabilities, the elderly, and people from ethnic minority backgrounds? Will we work with one or several users or groups of trainers or with a range of local groups? How many people do we need? What level of involvement, and from whom, do we need to meet our requirements? How well is the service user’s involvement working and what needs to be changed? What training and support is available?