Involving individuals with dementia as co-researchers in analysis of findings from a qualitative study

Abstract

Patient and public involvement is widely accepted as good practice in dementia research contributing substantial benefits to research quality. Reports detailing involvement of individuals with dementia as co-researchers, more specifically in analysis of findings are lacking. This paper reports an exercise involving individuals with dementia as co-researchers in a qualitative analysis. Data was from anonymised extracts of interviews with people with dementia who had participated in a multistage study on risk communication in dementia care, relating to concepts and communication of risk. Co-researchers were involved in deriving meaning from the data, identifying and connecting themes. The analysis process is described, reflections on the exercise provided and impact discussed. The session improved overall research quality by enhancing validity of the findings through application of multiple perspectives while also generating sub-themes for exploration in subsequent interviews. Development of guidance for involving individuals with dementia in analysis of research findings is needed.

Keywords

co-research dementia patient and public involvement user involvement

Introduction

Patient and public involvement (PPI) in research is extensively accepted as good practice and increasingly becoming a requirement of funders (Gillard, Simons, Turner, Lucock, & Edwards, 2012; INVOLVE, 2012; Littlechild, Tanner, & Hall, 2015) and publishers (Richards, Snow, & Schroter, 2015). PPI in research involves relevant groups and individuals, for example service users or carers, as partners rather than as participants (HSC Public Health Agency, Research & Development Division, 2014; Taylor, Killick, O'Brien, Begley, & Carter-Anand, 2014; Trivedi & Wykes, 2002). Involving those who are directly affected by the topic that is being researched ensures relevance and improves quality by adding an expert perspective (Brett et al., 2014b; INVOLVE, 2012; Needleman, 2014; National Institute for Health Research, 2014). Good practice guidance recommends that PPI should be incorporated into all stages of the research cycle (INVOLVE, 2012; National Institute for Health Research, 2014) from identifying and prioritising topics, developing proposals, designing data collection materials, preparing participant information sheets, collecting data, analysing data and disseminating research findings. However, a recent scoping study and survey in the United Kingdom (Mathie et al., 2014) reported low levels of user involvement in some activities including data collection, report writing and data analysis.

PPI is actively endorsed across dementia research networks (Alzheimer's Research UK, n.d; Alzheimer's Society, n.d). Involving people with dementia as partners is recognised as not only improving quality of the research, but also providing benefits for the individual with dementia, for example feeling valued, involved and informed (Dementia Action Alliance, 2010; Scottish Dementia Working Group Research Sub-Group, UK, 2014) as well as developing skills and forming networks (Littlechild et al., 2015). More generally, service user involvement can reduce power imbalances between researcher and those being researched (Godfrey, 2004), enhance appropriateness of research (Brett et al., 2014a) and build confidence and self-worth of service users (Brett et al., 2014b). Although such participation is widely accepted as beneficial and ultimately necessary, research papers describing the involvement of people with dementia as co-researchers are lacking. In particular, papers involving this group as collaborators in the analysis process are scarce. Development of literature in this domain is needed to guide and inform researchers.

While PPI is endorsed at all stages of the research cycle, involvement of service users in analysis in general has not been well documented (Cashman et al., 2008; Nind, 2011). A developing body of papers describing involvement in analysis has emerged in research involving children and young people (Coad & Evans, 2008; Lundy, McEvoy, & Byrne, 2011), learning difficulties (Richardson, 2002; Tuffrey-Wijne & Butler, 2010), Down Syndrome (Stevenson, 2014), mental health (Gillard et al., 2012) and older people (Tanner, 2012). Publications detailing co-research with older people with dementia (Littlechild et al., 2015; Tanner, 2012) make a valuable contribution to the development of collaborative research approaches. However, these papers are limited in that they do not provide substantial detail on how this group was involved in analysis. The value of involving service users in qualitative data analysis is clear if we consider that this phase of the research cycle is central to knowledge construction and consequent impact (Nind, 2011). Involving users in analysis enhances validity (Nind, 2011; Tuffrey-Wijne & Butler, 2010), credibility (Dobbs & Moore, 2002); provides a wider, more relevant viewpoint (Brett et al., 2014a); and can also enable researchers to identify themes and topics for exploration in succeeding interviews (Littlechild et al., 2015; Miller et al., 2006).

However, as with any form of involvement in research, involving users as partners presents ethical and practical challenges of which researchers must be aware (Littlechild et al., 2015). While the ethos of PPI is generally accepted as positive, there have been criticisms around the practice of user involvement in research and queries pertaining to its actual impact. Ethical issues raised often relate to tokenistic practice (Ocloo & Matthews, 2016; Snape et al., 2014) and lack of diversity of representation in user groups (Beresford, 2007; Brett et al., 2014b). Criticisms have also been levied around service user participation as a covert form of controlling and exploiting users to advance underlying political or institutional agendas (Carey, 2009, 2011; Cowden & Singh, 2007). Moreover, concerns have been raised about the limited robust evidence base demonstrating the actual impact of PPI (Haywood et al., 2014) with issues such as poor reporting and lack of systematic evaluation noted (Mathie et al., 2014; Staniszewska et al., 2011; Staniszewska & Denegri, 2013). On a more practical level, matters including recruitment, associated financial costs, training and time required for planning and delivery (Brett et al., 2014b; Mathie et al., 2014) can present barriers to effective practice in PPI. Papers reporting the methodology of involving users with dementia as co-researchers in different stages of the research cycle, discussing potential challenges to be considered and demonstrating the impact of this involvement are therefore needed.

Risk communication in dementia care study

This paper describes how a group of individuals with dementia were involved as co-researchers in analysis of extracts from interview data forming part of a multistage study on risk communication in dementia care. Data had previously been gathered from participants with mild to moderate dementia who had recently made a decision about their daily living or care that involved consideration of risks. Data presented related to concepts of risk held by people with dementia and communications about risk with both family carers and health and social care professionals. The overall study on risk communication in dementia care explored how risks are conceptualised and approached by individuals with dementia, family carers and professionals working in dementia care practice; how risks are discussed between these groups in dementia care and daily life decisions; and perspectives and experiences of health and social care professionals on verbal, numeric and visual modes of communicating risk likelihoods. Research findings to date are reported in Stevenson, McDowell and Taylor (2016), Stevenson and Taylor (2016, 2017) and Stevenson, Taylor and Knox (2016). Individuals with dementia were also involved as advisors to the data collection process (more specifically providing advice on conducting an interview with a person with dementia) and in reviewing written dissemination materials for a public audience. This research paper reports only on the data analysis aspect of the study as an area of co-research that is generally underreported.

Co-research methodology

The aim of the exercise was to involve individuals with dementia as co-researchers in analysis of research findings to enhance validity through a process of applying multiple perspectives to data analysis. The session centred on generation of ideas and themes from the perspective of individuals with dementia rather than verification of interpretations of the core research team. The analysis formed part of a wider grounded theory approach whereby the identification of salient themes or sub-themes and points of interest raised by the group allowed for further exploration of these topics in subsequent interviews.

The co-research team

Four individuals with dementia were involved as co-researchers in analysis of findings (male (2), female (2); Under 65 (2), 70–74 (1), 75–79 (1)). Co-researchers were recruited through one of the recently formed Alzheimer's Society Service User Review Panels (SURPs) in Northern Ireland. SURPS are small groups of people with dementia who convene with a remit to discuss and review a diverse range of topics relevant to Alzheimer's Society and external organisations. Topics may include, for example, review of organisational strategies or critiquing information materials. The SURP was therefore seen as an appropriate forum for the analysis, fitting with the group remit as well as the interests and abilities of members. A request application form was submitted prior to attending the SURP, in accordance with Alzheimer's Society protocol. This afforded the group opportunity to make an informed, non-pressurised decision about whether they would like to be part of the analysis process. Ethical approval for the overall study, including this PPI exercise, was granted by the Office of Research Ethics Committee Northern Ireland. Individuals with dementia who had previously participated in interviews had signed consent forms allowing their anonymised data to be used in the analysis sessions.

Data analysis session

The session was informed by elements from previous research papers reporting involvement of service users in analysis of data, as referenced below. General guidance on communicating with people with dementia was followed (Alzheimer's Society, 2012; McKillop & Wilkinson, 2004; Scottish Dementia Working Group Research Sub-Group, UK, 2014; Sedgewick, 2014) as well as reflections from previous interviews with people with dementia during the data collection phase. Facilitation skills were guided by Richardson (2002) taking a non-directive approach and recognising the importance of listening, reflecting back to the participants what they had said in their own words, acceptance and positive regard for opinions. Creation of a relaxed and non-judgmental environment to foster conversation and freedom of expression was paramount (Tanner, 2012; Tuffrey-Wijne & Butler, 2010). Reflective experience from the previous interviews had been that participants would tend to generally agree with the interviewer whenever the researcher attempted to summarise what the participant had meant by their response. For this reason, during the interviews, particular attention was given to paraphrasing using the participant's own words (rather than the interviewer's words) and to avoid making suggestions as to what the individual might have meant by a particular response. Based on this experience, it was considered more meaningful to involve the group in identifying themes rather than verifying the interpretations of the research team.

The data analysis session lasted 2 h and was also attended by the facilitators of the SURP. The session commenced with a presentation on the research project and clarification of what co-research is, followed by three interactive 20 min exercises – one analysing definitions of risk and two on risk communication. A short coffee and chat break was taken mid-session. Exercises involved group discussion guided by a series of pre-prepared prompts (Figure 1). A combination of role play (between the facilitators) and handouts was used to present the anonymised quotes and extracts to co-researchers for analysis. Highlighters and pens were provided to the group to highlight any salient words or phrases and to make notes (Stevenson, 2014). Ideas and comments were written up on a flipchart, constituting a visual reminder for the group (Tanner, 2012). It was emphasised repeatedly to the group that their involvement was not as participants in the research study but in making sense of the interview data as members of the research team.

Figure 1.

Sample prompts.

Group exercise – Risk concepts

Participants with dementia who had taken part in the interviews had been asked what the word risk made them think of. The SURP group were presented with anonymised responses from participants which included one word answers and short quotes. All responses to the question ‘what does risk mean to you’ from completed interviews were included. Only material for which interviewees had signed consent forms allowing their quotes to be used in these sessions was presented. The facilitator read through the responses and provided handouts to the group along with highlighters and pens for note taking. A series of prompts were presented to elicit views on what the group interpreted risk as meaning to a person with dementia (based on the participant responses), what they felt was interesting and how the responses connected together. The exercise aimed to allow the group to derive their own meanings from the data, rather than verifying the interpretations of the core research team. Following oral and written presentation of the participant responses, the group were given some time to reflect on these and converse amongst themselves about the responses, in particular anything they felt was interesting or relevant (Stevenson, 2014; Tuffrey-Wijne & Butler, 2010). Meanings of risk, based on the participant responses, were then discussed among the group, for example the idea of risk as defined by a situation. Connections were also made between responses, for example that risk was a ‘fear’ of ‘danger’.

Group exercise – Risk communication

Participants in the primary research interviews had also been asked who they talked to about risks. Due to time constraints, it was decided by the research team to focus discussion on one health-based risk and one social care-based risk. Driving and medications were two of the risks that these individuals most often discussed with others such as their General Practitioner, Pharmacist and family. Extracts were selected to include both male and female participants discussing different experiences of these risks. Excerpts included discussions with both professionals and family carers. The anonymised extracts from transcripts referencing these discussions were presented to the group via a role play (involving facilitators) and paper copies of the anonymised transcripts. Discussion was aided by prompts to explore what the group thought was interesting about these discussions, to identify and connect themes and any notable differences between communications with families and professionals. The group were encouraged to bear in mind the definition of risk communication as sharing information about risks and sharing ideas and opinions about risks (this definition was presented in bold print in handouts).

Group interpretations and impact of user involvement

Involving users with dementia in analysis impacted on the overall quality of the study by allowing for inclusion of multiple perspectives in interpretation of findings and generating new insights to be explored in further interviews. Importantly, group comments assisted the research team in identifying information considered to be of practical significance to users, consequently producing ideas for lay dissemination. The analysis also allowed for important critical reflections on some of the challenges and good practice in such sessions.

A primary benefit of involving individuals with dementia in analysis was in enhancing the core research team's understanding of the data from a user perspective. Reflections of the group provided the research team with a richer understanding of the wider context within which risks are experienced by the person with dementia. For example, individuals offered their own personal reflections on risk, including that risk is individual and depends on the stage the person is at, risks are often of more concern to the family than the person with dementia and distinguishing between the importance of making someone aware of risks and making them worry about risks. Interpretations of the group importantly allowed researchers to identify the conceptualisations of risk (developed through the primary study) that were most meaningful to this group of individuals.

Co-researchers were particularly interested in responses that resonated most with their own experiences, particularly that they did not usually think about risk in daily life. It was noted that individuals do not tend to think about risk until they are in a particular situation, linking back to the definition of risk as situation. Relative to communication of risks, the group again connected these responses to their own experiences enabling the researchers to understand the significance and authenticity of these responses from the perspective of the person with dementia (Littlechild et al., 2015). For example, the group did not feel that the trust apparent in the Dr–patient relationship, as evidenced in the transcripts was reflective of their own experiences. Co-researchers were able to advise that they tended to ask about side effects if and when they occurred rather than when first taking the medications. These experiences again enabled researchers to develop better insight into the context in which communications about risk were taking place. Concerning discussions around driving one of the SURP members was able to share that they had a similar experience to that reported in one of the participant transcripts. Such connections with the data naturally opened up discussions and fostered a more authentic discourse. Both male participants identified strongly with the ‘shock’ reported around being informed that they would need to take a driving test following their diagnosis. The group added their perceptions of the differences between communications with family members and those with professionals, primarily being that those with family were more personal and allowed for ‘total honesty’.

The analysis in turn generated additional sub-topics for exploration in subsequent interviews, for example how it makes the person with dementia feel if they are not included in discussions about their medications. The session also importantly led to development of ideas for dissemination of findings. Members commented on what was ‘good’ and effective about styles of risk communication (i.e. making the individual think by presenting a scenario, rather than telling them what to do) which supported the research team in development of recommendations that would be of practical benefit when reporting and disseminating findings. The need for a list of useful questions to ask clinicians about medications was also raised providing further ideas for structure of dissemination materials. Finally some general advice on good practice for interviewing was suggested to researchers. The need to ‘dig deeper’ to find out what the risks are when interviewing a person with dementia was emphasised by one of the co-researchers.

Evaluation

Importantly, the impact of involvement for service users was reported to be positive. The session was evaluated by using open-ended questions in a paper format, enquiring what participants enjoyed most and least about the session and what they felt were the benefits in being involved as co-researchers in the exercise. Evaluations from the group were overwhelmingly positive with no negative comments proffered. However due to the lack of a systematic evaluation methodology, such reports should be viewed with caution. Specific benefits perceived by the group included ‘meeting other people with dementia who still have their wits about them – dementia usually focuses on people who are in the later stages’ and ‘a chance to think about situations and hear from other's their thoughts’. Positive comments were made relating to the usefulness of the role-play exercises as an opportunity to ‘actually think about a situation that happened to someone else’. These responses indicate that the individuals benefitted from taking part in an activity that required them to reason, use their cognitive abilities, meet with others of similar ability and hear the opinions of other people with dementia. While evaluation forms were anonymous they were identifiable which may have impacted on responses. Factors such as politeness or wanting to please the researcher were also possible influences.

Reflections and limitations

The analysis essentially improved the quality of the research by allowing for a more contextual understanding of findings as well as identifying sub-topics for further investigation in succeeding interviews. Conducting this phase of the analysis midway through data collection also allowed for an iterative approach whereby further data collection and conceptualisation of data were shaped by the emerging themes, in keeping with grounded theory methodology. Importantly, the experience of involvement for users was reported to be positive. Previous reports have similarly demonstrated positive impact of involvement for users with dementia including empowerment and providing a sense of purpose and value (Di Lorito et al., 2016; Tanner, 2012). While the intrinsic value (Snape et al., 2014) of PPI in research would seem to be apparent, more robust measures of evaluation are necessary to effectively assess impact of user involvement on this level.

Limitations included that co-researchers were not presented with the complete series of manuscripts, therefore were not involved in analysing the full body of data. This decision was grounded in practical considerations such as time constraints, resources and the onerous demands of reading through hundreds of pages of transcripts. However, selection of quotes and extracts by the core research team is recognised as introducing potential bias into the analysis procedure. Lack of training and inexperience in analysis skills (Nind, 2011) of the co-research group must be acknowledged as a potential barrier to meaningful involvement. Data analysis presents challenges for experienced, skilled researchers (Coad & Evans, 2008), therefore co-researchers would have benefited from a number of capacity-building sessions (Lundy et al., 2011) or training exercises (Cotterell, 2008; Di Lorito et al., 2016) to develop their understanding of the wider research study, their distinct role as co-researchers and analysis skills. Indeed, developing the ‘research literacy’ (Ward et al., 2010) of users will fundamentally empower groups to engage more meaningfully and equally as research partners, as well as preserving academic rigour (Tuffrey-Wijne & Butler, 2010). Use of creative visual representations and closer attention to the physical space in which user involvement takes place (Bartlett, Hick, Houston, Gardiner, & Wallace, 2015) should also be considered when designing both capacity building and co-research sessions (Bartlett et al., 2015).

Ensuring that users with dementia are not misled about the nature of their role in the research process is imperative for ethical practice in PPI. The conceptual distinction between user involvement as partners and participant involvement to generate research data (Smith et al., 2008) is often not inherently grasped. Indeed misunderstandings around PPI and variance in interpretations have been found to be evident even within the research community (Mathie et al., 2014). The distinction between involvement in analysis as a partner, rather than as a participant generating new data, must be continually reinforced to ensure co-researchers clearly understand the meaning of their involvement. Core researchers should also ensure that reflections from co-analysis sessions are not presented as findings in reports.

Lack of diversity in user networks has been repeatedly raised as an issue in PPI (Beresford, 2007; Brett et al., 2014b) meaning only the voices of certain service users are effectively influencing research planning and delivery. Users involved in the current study represented broad age ranges (including younger people with dementia) with an equal gender split. Ethnicity, religion and socio-economic background were not gathered which may represent a limitation. While the specific stage of dementia of co-researchers was not established, it was speculated that members of the group were in the earlier stages of dementia while the study involved those with early to mid-stage dementia. The user group may therefore not have adequately represented those in the more moderate stages of dementia, who might be considered to experience risks differently from those in the earlier phases. Issues around involving those with more advanced dementia in PPI need to be addressed in wider discourses to ensure this voice is not excluded (Di Lorito et al., 2016). More generally academics should take active measures to ensure the diverse representation of the user voice in their research with respect to age, ethnicity, experience, gender and socio-economic background.

Finally while users with dementia were involved in other stages of the research process including advising on interviewing an individual with dementia and reviewing dissemination materials, the overall study would have been strengthened by enhanced involvement of users. For example, users could have been consulted on data collection materials, piloting interview questions, reviewing participant information sheets and consent forms or in data gathering. Establishing a PPI group involving individuals with dementia over the lifespan of a longer term project must take into account how the researchers will adapt to potential changing needs and abilities of the users. On a practical level, enhanced involvement of users must be adequately resourced and factored into planning of research activities.

Conclusion

Involving individuals with dementia in the data analysis process improved quality of research by adding an expert perspective while also providing benefits for the person with dementia including opportunity to exercise skills and abilities. Care must be taken to avoid tokenism in such processes. In particular, the exercise should meet the interests, abilities and skills of the co-research group. Further literature documenting involvement of people with dementia in data analysis is needed to provide guidance on this process to ensure that people with dementia can be involved in this specific domain of co-research in meaningful ways. Methods for effectively evaluating impact and capacity building are also necessary. More generally, evidence-based models of good practice of PPI in dementia research are needed.

Footnotes

Acknowledgements

The authors would like to thank Alzheimer's Society Service User Review Panel, Belfast group for their involvement as co-researchers.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was carried out as part of a Risk Communication in Dementia grant funded by the Health and Social Care Research and Development Division, Public Health Agency in Northern Ireland and Atlantic Philanthropies. This support is gratefully acknowledged.

Mabel Stevenson is a research assistant at Ulster University. Her research focuses on conceptualisation of risk and risk communication in dementia care. Mabel has previously been employed in the health and social care and voluntary sectors and has experience of working directly with individuals with dementia and their families. She is part of the programme group for the British Society of Gerontology in Northern Ireland.

Brian J Taylor is a professor of Social Work at Ulster University, Northern Ireland. Professionally qualified in social work and teaching, he spent 10 years as a practitioner and manager, and then 15 years in training and organisation development in health and social care before joining the University. Brian leads the University Research Cluster on Decision, Assessment, Risk and Evidence Studies (www.ulster.ac.uk/dare) and has published widely on these topics ().

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