Professionals perceptions of patient involvement Rosemary Chesson, The Robert Gordon University Lesley Adams, Grampian Primary Care NHS Trust
DEEDS (Professionals perceptions of patient involvement) Background n Major changes in health services over last 30 years, including from product to customer orientation n Increasing government emphasis on the consumer or patient
Key Scottish Executive papers Designed to Care It is no longer good enough to simply do things to people; a modern healthcare service must do things with the people it serves Our Healthier Nation A greater sense of involvement for both consumers and professionals than ever before. NB Early documents failed to define meaning of involvement
Local Scene n Patient and public involvement is central to good clinical governance n Grampian Health Improvement Plan and GPCT Implementation Plan stressed services need to be responsive to patients needs and wishes
Research Context n High volume of publications on patient involvement n Small number of empirical studies on patient involvement n Few investigations of professionals perceptions of involvement n General view that professionals views are barrier to patient involvement
Purpose of project n provide baseline data on professionals views and attitudes to patient involvement n establish health professionals interpretations of involvement n develop education and training packages in response n evaluate effectiveness of programme [Funded by Clinical Governance Monies]
Study Design Selection of 2 LHCCs (Aberdeenshire Central and Aberdeen & North LHCC) Random selection of qualified staff Staff invited to participate in interviews & focus groups Non-respondents followed-up Chairmen of LHCCs and lead nurse invitations Interviews and focus groups held Data analysis
Questions asked egs n What does patient involvement mean to you? n What are the main components of patient involvement? n To what extent do you think patients should be involved in decision making? n What do you see are the barriers to patient involvement?
Study participants 1 205 staff invited : 50 agreed (24.4% participation rate) A&N 49 & AC 65 negative responses 2 Follow-up of targeted individuals participation to 92 (44.9%): AC = 53; A&N = 39 3 Main staff groups included: practice managers; qual nurses (DNs, HVs, MWs, PNs); lead nurses; hosp nurses; (RGNs & SENs); PAMs; and GPs
Data collection Qualitative methods 18 one-to-one interviews 4 small group discussions (2-4 people) 7 focus groups (8-13 people, uniprofessional/multi-prof) All interviews undertaken by LA All interviews, discussions & focus groups recorded All tapes transcribed and coded
What does patient involvement mean? Responses covered a broad spectrum: its about them doing what they are told, when theyre told and thats it podiatrist patients.... being informed, communicated with and you know, maybe having a say.... us listening to them practice manager I suppose the patients might have a say in the running of the surgery, I suppose that would be it in the end nurse
What does patient involvement mean? Patient involvement is from day-to-day patient contact right through to consultation exercises regarding the provision of services. So its at all levels. I think that its difficult sometimes to divorce the process that trusts and boards go through as consultation from naturally first sitting down with a patient and agreeing your management plan with them. So there is a whole spectrum. GP
Public involvement Majority of staff defined it in terms of public involvement Well, patient involvement.... to me the thing that springs to mind is focus groups nurse
Patient involvement in the clinical setting A minority related it to the clinical setting: Patient involvement is one of core elements of a doctor/patient relationship.... Its a shared process. Its working with patients on an adult basis rather than telling them what to do. Its decisions, good decisions or bad decisions. Getting them more involved in the process of care and its a 2 way process, that I have duties and responsibilities for 1 patient, for successful outcomes and everyone working as well as we can, professionals and patients GP I dont know if its more specific than involving patients in individual treatment, having them identify their own goals, what the problem areas are & working with you to work towards the goal, identifying their hopes. I think, basically, we dont function if we dont have patient involvement. physiotherapist
What does patient involvement mean? Staff as proxies for patients:.... staff can have two hats on. They can have the patient hat on, so that you may well think why consult patients? Or think you havent done it, but you have by consulting with staff, because they are a patient as well as a staff member nurse
What does patient involvement mean? Language used by respondents reflected perceptions of patients: Its getting them to make decisions GP Probably allowing patients to give their opinions GP
To what extent should patients be involved in decision making? Responses often in terms of extent to which patients ARE involved: - commonly discussed in terms of public involvement, ie surveys, focus groups - lack of continuity in involvement activities -general perception patients not significantly involved
To what extent should patients be involved in decision making? Majority of responses conditional, esp relating to age and education of patient: I think it would very much depend on the patient practice manager It depends on their depth of knowledge health visitor It depends on the patient, some can only take two or three bits of information in PAM
.... The patient is also the expert and I can learn from patients all the time because they know better than I do how to manage their specific rare condition,.... Because they live with it all day, every day and they have got a reason to be expert. GP
Key issue: patients best interests I mean to a degree. I dont think that they should be able to come in and just say what they want, because that might not always be whats in their best interest, you know from a medical point of view GP It is difficult when weve got this duty of care. If they make a so called wrong decision it gets very difficult to put it in the correct context, if they are competent to make the decision, but everyone round about is sure theyre making the wrong decisions. Its difficult when you have this duty of care nurse
Guiding patients in decision making They should be guided, guided with our professional knowledge, but with communication and listen to them. It should be 50/50 PAM I think they should be fully allowed as long as they know the pros and cons of their decision. They should be allowed to make that decision themselves nurse/RGN I think you would ideally see yourself as a facilitator, rather than somebody who makes it happen. Yes, somebody who allows people to make choices, but youd allow them to make the right choices health visitor
Well, if you havent heard of what a patient (brings off the Internet), they think well, she doesnt know her stuff - Im not going to listen to anything else that she has said. Whereas, if I have heard about this new supplement - but it doesnt work - you can discuss it on a more equal basis.... dietitian
Effects of patient involvement Improved health outcomes Better relations with patients I think that if youre working with a patient, you know that theyre much more likely to follow this agreed plan, you know you hopefully have the outcome you expect. I think its likely to lead to less complaints, less confrontations and when things do go wrong, the patients may well be keener to try and understand what happened, than just accuse, blame the doctor GP
Effects (continued) Providing feedback.... in order to perform well, people need feedback from their peers. But they also need feedback from the people they provide the service for. Yeah, so I think feedback is an important part of anybodys development as a professional. GP May be required in future years I think well get challenged a lot more to prove it in the future. Its already happening, theres litigation that is hitting nursing faster than us PAM
Effects (continued) BUT I dont think its going to make a huge difference if patients do become more involved, thats fine - well try and address anything they bring up.... GP I think its nice to listen to other peoples opinions and perhaps the patients maybe do have good ideas. But I dont think that it would actually change what I did in a consulting room situation, because I mean, weve both been GPs for almost 20 years. Im not saying you cant change that, but it would be unlikely though GP
Barriers to patient involvement Some staff did not agree there were barriers: I cant see any barriers nurse/RGN I cant see any barriers either nurse/RGN More commonly, a number were identified: time finance hospital setting city practice skills needed lack of forward planning
Barriers (continued) Previous training and experience We were brought up to stay in control, you have to inspire confidence. health visitor I dont know if weve changed as much as the patients have..... Maybe thats what the problem is.... practice manager
Training needs Overall, few were identified. A lead nurse commented: I think the biggest training thing would be how to actually consult with them. Not so much (about) we could set up a meeting, put out a questionnaire but maybe (rather) attitude change, behaviour change and the skill of doing it
Key findings Commonly no clear distinction was made between public involvement and patient involvement, eg Its the same. Relatively few participants related involvement to the clinical setting. Differences in perceptions between professions as well as within professions. Paternalism was widespread.
Discussion Stereotyping of patients. Assumptions were made re patients willingness to make decisions and desire for choice. Discontinuity between patients and professionals expectations. Cultural lag/acceptance of societal change: I dont know if weve changed as much as the patients have....
Implications Challenges current patient/professional relationships - in terms of a hierarchy of credibility, patients are seen at the bottom (Playle & Keeley, 1998) - increasing patient knowledge (through, eg patient information), may challenge professional autonomy Need to standardise practice across specialisms, eg: Model of mutual participation for patients with chronic disease been promoted over last 50 years. Examine needs of more challenging groups of patients Older people may be empowered through skilled communication - seen to enhance feelings of control (Le May, 1996)
Implications (continued) Design of future education and training strategies - need to focus on attitude and behavioural change. Approaches to Patient Focus & Public Involvement Agenda (?current emphasis on patients) Research. Are patients subjects or participants?