THE DEEDS PROJECT Professionals perceptions of patient involvement Rosemary Chesson The Robert Gordon University

Acknowledgements n All study participants n Lesley Adams n Project Steering Group n Grampian Primary Care Trust Clinical Governance Funding

The Wider Context Patient Focus and Public Involvement Government policies Demographic trends Changes in attitudes towards disabilities Consumerist society Scientific & technological advances Changes in delivery of health & social care services Research

DEEDS Project Main Aim To develop and evaluate educational development strategies to support patient involvement [research to underpin development strategy]

Key objectives n establish staffs interpretations of involvement n provide baseline data on professionals views of patient involvement n identify barriers to patient involvement

Study design Selection of 2 LHCCs (Central Aberdeenshire & Aberdeen & North) Random selection of qualified staff Interviews & Focus Groups Data analysis, draft report, feedback

Study participants n 205 invited 92 participated n Participants included: AHPsGPsMidwives DNs, HVs, PNs, LNs RGNs & SENs (community hospital) Practice managers Practice managers

Data collection Qualitative methods n interviews n focus groups n small group discussion n Tape-recording and transcription

Findings

Definitions of involvement n responses covered a broad spectrum n some staff (especially GPs) saw patient involvement encompassing one-to-one clinical consultations to large scale consultation exercises. n many related the term solely to public involvement n language reflected need for professional consent for patient involvement n in rural areas, some staff felt professionals could act as proxies for patients

What does patient involvement mean? patients being informed, communicated with and you know, maybe having a say us listening to them know, maybe having a say us listening to them Practice Manager Practice Manager well, patient involvement... to me the thing that springs to mind is focus groups Nurse Nurse probably allowing patients to give their opinions GP GP Its getting them to make decisions and understanding thats the only way, and, well, for them to understand what the problem is, only way, and, well, for them to understand what the problem is, as opposed to saying take this and youll be okay as opposed to saying take this and youll be okay GP GP

To what extent should patients be involved in decision making? n responses focused on current situation n mostly discussed in terms of public involvement lack of continuity in involvement activities lack of continuity in involvement activities general perception patients not significantly general perception patients not significantly involved (belief most are apathetic/unwilling) involved (belief most are apathetic/unwilling)

Should patients be involved? Conditional on: n age n education n disabilities n The PATIENTS BEST INTEREST

Should patients be involved? I think it would very much depend on the patient Practice Manager Practice Manager it depends on their depth of knowledge Health Visitor Health Visitor I think they should be fully allowed, as long as they know the pros and cons of their decision Nurse it is difficult when weve got this duty of care Nurse Nurse

Barriers to patient involvement n some staff saw no barriers n more commonly, several identified - time - time - finance - finance - lack of skills - lack of skills - previous training and experience - previous training and experience - lack of strategic direction - lack of strategic direction

Training and experience we were brought up to stay in control, you had to inspire confidence Health Visitor I think we were trained to hold onto power, definitely. Theres this whole thing about sharing power and giving power as opposed to enabling a person. (you need to look) as if you are in control always and not make the patient feel... you were unsure and create an air of uncertainty Health Visitor Health Visitor I think we have to change our service to suit the people we are treating. For many years we have just served ourselves and thought about ourselves AHP

Changing behaviour I think its nice to listen to other peoples opinions... But I dont know that it would actually change what I did in a consulting room...(as) weve been GPs for 20 years. Im not saying you can't change that, but it would be unlikely though GP GP I think the biggest training thing would be how to actually consult with them. Not so much (about) a meeting... a questionnaire but maybe attitude change, behaviour change and the skill of doing it Lead Nurse

Changing behaviour cont.... I dont know if weve changed as much as the patients have... I dont know if its changed that dramatically to what the patients have. Maybe thats the problem have. Maybe thats the problem Practice Manager

Implications for: n patient/professional relationships n practice across professions/specialisms n identifying the needs of more challenging groups of patients n future research n other policy agenda i.e. social inclusion n future education and training