Professionals’ perceptions Professionals’ perceptions of patient involvementof patient involvement

Rosemary Chesson, The Robert Rosemary Chesson, The Robert Gordon UniversityGordon University

Lesley Adams, Grampian Lesley Adams, Grampian Primary Care NHS TrustPrimary Care NHS Trust

DEEDSDEEDS(Professionals’ perceptions of patient (Professionals’ perceptions of patient involvement)involvement)

BackgroundBackground

Major changes in health services Major changes in health services over last 30 years, including from over last 30 years, including from product to customer orientationproduct to customer orientation

Increasing government emphasis Increasing government emphasis on the consumer or patienton the consumer or patient

Key Scottish Executive Key Scottish Executive paperspapers

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 NationA greater sense of involvement for both consumers and professionals than ever before.

NB Early documents failed to define meaning of involvement

Local SceneLocal Scene

Patient and public involvement is central to good clinical governance

Grampian Health Improvement Plan and GPCT Implementation Plan stressed services need to be responsive to patients’ needs and wishes

Research ContextResearch Context

High volume of publications on patient involvement

Small number of empirical studies on patient involvement

Few investigations of professionals’ perceptions of involvement

General view that professionals’ views are barrier to patient involvement

Purpose of projectPurpose of project

provide baseline data on professionals’ provide baseline data on professionals’ views and attitudes to patient involvementviews and attitudes to patient involvement

establish health professionals’ establish health professionals’ interpretations of involvementinterpretations of involvement

develop education and training packages in develop education and training packages in responseresponse

evaluate effectiveness of programmeevaluate effectiveness of programme

[Funded by Clinical Governance Monies][Funded by Clinical Governance Monies]

Study DesignStudy 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 askedQuestions asked

egsegs

What does patient involvement mean to you?What does patient involvement mean to you?

What are the main components of patient What are the main components of patient involvement?involvement?

To what extent do you think patients should To what extent do you think patients should be involved in decision making?be involved in decision making?

What do you see are the barriers to patient What do you see are the barriers to patient involvement?involvement?

Study participantsStudy 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 collectionData collection

Qualitative methods18 one-to-one interviews 4 small group discussions (2-4 people) 7 focus groups (8-13 people, uniprofessional/multi-prof)

All interviews undertaken by LAAll interviews, discussions & focus

groups recordedAll tapes transcribed and coded

FindingsFindings

What does patient involvement What does patient involvement mean?mean?

Responses covered a broad spectrum:

‘ it’s about them doing what they are told, when they’re told and that’s 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 What does patient involvement mean?mean?

‘Patient involvement is from day-to-day patient contact right through to consultation exercises regarding the provision of services. So it’s at all levels. I think that it’s 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 involvementPublic 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 Patient involvement in the clinical settingthe clinical settingA minority related it to the clinical setting:

‘Patient involvement is one of core elements of a doctor/patient relationship . . . . It’s a shared process. It’s working with patients on an adult basis rather than telling them what to do. It’s decisions, good decisions or bad decisions. Getting them more involved in the process of care and it’s 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 don’t know if it’s 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 don’t function if we don’t 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 haven’t 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 What does patient involvement mean?mean?

Language used by respondents reflected perceptions of patients:

‘It’s getting them to make decisions’GP

‘Probably allowing patients to give their opinions’

GP

To what extent should patients be To what extent should patients be involved in decision making?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 To what extent should patients be involved in decision making?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 canlearn 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 Key issue: patients’ best interestsinterests

‘I mean to a degree. I don’t think that they should be able to come in and just say what they want, because that might not always be what’s in their best interest, you know from a medical point of view’

GP

‘It is difficult when we’ve 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 they’re making the wrong decisions. It’s difficult when you have this duty of care’

nurse

Guiding patients in decision Guiding patients in decision makingmaking

‘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 you’d allow them to make the right choices’

health visitor

‘Well, if you haven’t heard of what a patient (brings off the Internet), they think well, she doesn’t know her stuff - I’m not going to listen to anything else that she has said. Whereas, if I have heard about this new supplement - but it doesn’t work - you can discuss it on a more equal basis . . . .’

dietitian

Effects of patient Effects of patient involvementinvolvement

Improved health outcomesBetter relations with patients

‘I think that if you’re working with a patient, you know that they’re much more likely to follow this agreed plan, you know you hopefully have the outcome you expect. I think it’s 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 Effects (continued)(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 anybody’s development as a professional.

GPMay be required in future years

‘I think we’ll get challenged a lot more to prove it in the future. It’s already happening, there’s litigation that is hitting nursing faster than us’

PAM

Effects Effects (continued)(continued)BUT

‘I don’t think it’s going to make a huge difference if patients do become more involved, that’s fine - we’ll try and address anything they bring up . . . .’

GP

‘I think it’s nice to listen to other people’s opinions and perhaps the patients maybe do have good ideas. But I don’t think that it would actually change what I did in a consulting room situation, because I mean, we’ve both been GPs for almost 20 years. I’m not saying you can’t change that, but it would be unlikely though’

GP

Barriers to patient Barriers to patient involvementinvolvement

Some staff did not agree there were barriers:‘I can’t see any barriers’ nurse/RGN

‘I can’t see any barriers either’ nurse/RGN

More commonly, a number were identified:timefinancehospital settingcity practiceskills neededlack of forward planning

Barriers Barriers (continued)(continued)

Previous training and experience

‘We were brought up to stay in control, you have to inspire confidence.’

health visitor

‘I don’t know if we’ve changed as much as the patients have . . . .. Maybe that’s what the problem is . . . .’

practice manager

Training needsTraining 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 findingsKey findings

Commonly no clear distinction was made between public involvement and patient involvement, eg ‘It’s the same’.

Relatively few participants related involvement to the clinical setting.

Differences in perceptions between professions as well as within professions.

Paternalism was widespread.

DiscussionDiscussion

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 don’t know if we’ve changed as much as the patients have . . . .’

ImplicationsImplicationsChallenges 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 Implications (continued)(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?