Producing valid theories through participatory contextual analysis

1. Producing valid theories through participatory contextual analysis Janet Harris, University of Sheffield Andrew Booth, Liz Croot, Fiona Campbell, Elizabeth Goyder, Patrice Van Cleemput, Jane Springett, Emma Wilkins – University of Alberta

2. Background • There is growing interest in using community-based peer support (PS) to help people self-manage health conditions by increasing health literacy

3. The problem with effectiveness reviews • Research questions often framed by reviewers – and policymakers – without involving those who are delivering or receiving the programme • ‘Problematizing’ may not involve key stakeholders or community perspectives • Relies heavily on what is reported in published studies • Synthesis findings may not reflect reality Primary research Secondarry research

4. This puts a spin on the question ’What works’ • ‘What works’ reflects • Construction of the problem: The issues identified by research funders, policymakers and researchers • Representational knowledge: • The interests of publishers, who want the ‘short version’ of the story • Decisions taken by the authors/editors on what is important to include

5. Community-based peer support: developing a model for health literacy Realist review and synthesis questions: • What approaches to community engagement are most effective in promoting peer support, to which people and in what circumstances? • How does community-based peer support impact on understanding of existing health information and use of health information and health services to improve health and reduce health inequalities? (Funded by the National Institute of Health Research Public Health Programme)

6. Developing culturally supported programme theory: the concurrent process Fill in the gaps?? There’s no description of what actually happens in the literature Propose a model Test the emerging theory We’ll find the answers in the literature – they can fill in the gaps Identify what works Explore gaps Compare definitions Define concepts Network with participants Scope the literature Research knowledge Community knowledge

7. Involvement and voice • Do the processes and assumptions used to generate knowledge about peer support and health literacy represent the experiences of people who provide peer support or who receive it? http://arcadiaboutiquephilly.blogspot.co.uk/2012/10/the-arts-in-philly-open-air-philadelphia.html

8. Mapping literature topics to UK participants

9. What is really happening in the review and synthesis Propose a model Test the emerging theory Return to the literature Revisit community initiatives Identify what works Invite authors to network events Explore gaps Dialogue across network members Compare definitions Contact authors Define concepts Network with participants Scope the literature Research knowledge Community knowledge

10. What is a ‘peer’? • A peer has been defined as a person who shares common characteristics (e.g. age, sex, disease status, health condition, stressor) with the individual or group of interest, such that the “peer” is able to relate to, and empathize with the person on a level that a non-peer would not be able to (Doull et al 2005; Hill, 1996).

11. ‘Peer support within a healthcare context is “...the provision of emotional, appraisal and informational assistance by a created social network member (Dennis 2003:329).” • The peer is a created source of support, internal to a community (Hill et al., 1996) (Giblin, 1989) • Peers understand the target population’s situation in a way that naturally embedded social networks may not

12. Definition of PS • Peers possesses specific knowledge that is concrete, pragmatic, present-oriented, and derived from personal experience rather than formal training (Borkman, 1976). • While program-specific training is essential, minimization should be practiced to ensure the preservation of ‘‘peerness’’ (Giblin, 1989).

13. Common characteristics of peer vary and may include age, gender, disease status, socioeconomic status, religion, culture or education • Types of peers in researched interventions include promotoras, community development workers, lay health workers, health champions, community nurses, health educators

14. Dennis, 2003

15. What do peer supporters [actually] do? Scientific knowing Communicative and reflective knowing Our network and some qualitative studies describe the process of PS as: 1st step: Establishing a connection; sharing a bit about yourself 2nd step: Finding common ground – not always the same as common characteristics 3rd step: Active listening to get a picture of the [entire] situation 4th step: Finding out what the client or patient needs 5th step: Offering information The majority of the research literature describes the content of PS initiatives as : • Health providers act as gatekeepers • The content of the interaction is defined by the provider and delivered by the peer supporters • PS is an intervention that is done ‘to’ a community rather than done ‘with’ a community • It works, more often than not but varying effect sizes and problems replicating successful initiatives

16. What kind of knowledge is produced when the ‘community’ is not involved in the research? • Technical knowledge • In his theory of critical knowledge, Habermas (1968) argued that people relate to the world and to one another through three distinct forms of knowledge: empirical or technical knowing, hermeneutic or communicative knowing, and critical or self-reflective knowing. • The research on peer support in health is primarily technical (Gillis, 2990:51) • It’s about imparting ‘scientific knowledge’ • …and it’s reductionist: we have summaries of what works, but we know very little about the intervention

17. ‘Place’ influences effectiveness of peer support How peers situate themselves in the community can be either : defined by the health providers commissioning the peer support programme OR the peer supporters can network within their communities and find their place Context: health professionals as gatekeepers control interaction Outcomes Constraining Giving information ‘to’ people Mechanisms Active listening; reflection; time to engage; allowing client to be in control of the conversation; client controls timing and pace of information Context: health professionals / community organisations enable interaction Enabling Exploring information ‘with’ people

18. Network views of PS • Support in context • Characteristics are not as important as the process of providing support • Views are consistent regardless of whether people are • Working in the areas of health promotion, prevention or chronic disease management • Have formal or informal training (practitioner versus volunteer background)

19. Can a health professional be a peer? • Possibly, if • There is the right context • Time to engage • Time to listen • And the right mechanism • Skills in establishing some common ground • this could be demonstrating that they understand the situation, from past experience of working with the community, the condition, the patients • Skills in ensuring that the conversation happens on an equal footing

20. Key components in health literacy interventions • Sørensen et al (2102) systematic review produced the common components in HL: • Deciding what you want to find out* • Awareness of information: Signposting when the client is ready for it* • Access to information: Findingi nformation and looking at it together in the context of everyday life* • Appraising information: Discussing quality and relevancefor my situation* • Applying information: Being told and shown how to use it through everyday activities* *Data from network - Inadequately described in much of the literature

21. Different elements of support are valued in different contexts • The research reflects the health system context: • Instrumental support e.g. the provision of practical help: “the literature clearly demonstrated that peer support primarily occurs without the provision of instrumental support” (Dennis, 2003). • The network reflects community contexts: • Practical help: ‘we took them to the website’; ‘we look at the food labels together when we’re cooking; ‘we shopped for healthy food’; ‘I took her to the clinic’ • Instrumental support considered to be a key attribute of peer support, but showing and doing are rarely described in the researched interventions

22. How is peer support related to health literacy? • People feel shame and embarrassment when they are not literate: • Shame: • ‘I don’t understand the information in this leaflet’’ • ‘I don’t understand what the doctor said’ • Embarrassment • ‘Is it OK to say I have a question’ • ‘I’m not sure what the best way is to ask a question’ • ‘What if I ask and they think I’m stupid’

23. Good peer support mediates shame and embarrassment • The peer supporter acknowledges the client’s situation and listens to the client • Honoring the importance of the story and respecting the client’s need to explain demonstrates respect • ‘Participatory parity’ – engaging in dialogue on an equal footing • Trust is created encourages people to ask questions when they don’t understand health information • Information is offered when people are ready for it – opportunistic learning • Ongoing dialogue,enables peer supporters to assess levels of understanding and concerns • Through conversation, information is turned into meaningful knowledge

24. Implications for research • Systematic reviews of patient education and health promotion programmes often produce equivocal results • Some studies might be effective because the context promotes good peer support, and the supporters have the communication skills needed to engage with patients • The importance of these is not always recognised • Do we need to re-analyse some systematic reviews??

25. Implications for programmes • Communication skills training may need to change to allow the clients/patients to have more control over • The content of the discussion • The framing of the problem • The pace and timing of information giving • The type of information provided • Participatory parity will be difficult for health professionals

26. Implications for health systems • Do the current contexts where information is typically provided enable peer support? • Are health providers comfortable dealing with health literacy issues? • Are health professionals best placed to offer this type of support? Should task shifting be considered, and if so what type? OR • Should we focus on helping all practitioners develop an understanding of the context in which people try to use health information?