Developing cartoons for long-term condition self-management information

Humour for communication and promoting self-management

Humour is used a great deal in everyday communication and surveys of public health and patient information show that cartoons are used to amuse or inform through several formats (written, audio-visual or online media). However, it is less clear how actual cartoons are developed or how they can be used to the greatest effect. In particular, there is little literature concerning the rationale behind the use of cartoons or visual images in patient information. However, there is a recognition of the need to develop an evidence base so that images in health care can be used to ‘maximise good and minimize harm’ [10] and that the potential to alienate or disempower is recognised [7]. Conventional metaphors are made real in cartoons (e.g. expression of emotions and feelings). Illness has also been powerfully conveyed as metaphor [11] suggesting a vehicle in the translation, conveyance and sharing of health information via cartoons and humour which perhaps provide an even more powerful hook [12].

People with long-term conditions and their significant others often use humour as a way of coping with the associated stresses, anxieties and embarrassments of their lives [13–19]. This is rarely acknowledged as a formal self-management strategy but seems linked to the ontological desire to continue with living life despite having to put up with the vagaries of dealing continuously with a long-term condition [6]. Humour works for people on a number of levels. It can be a source of resilience. Recent empirical research has found that humour serves a number of functions in social relationships including affiliation, deflecting attention from the self, as a protection in risky circumstances, reduction of discomfort, avoiding embarrassment, maintaining a light-hearted outlook, amusement and breaking up monotony [20]. It is relevant then to acknowledge and recognise these functions of humour in developing information resources. Whilst studies which have explored the role of humour have aided understanding of reactions to health events, the therapeutic value and utility for self-management might be captured and used through the medium of cartoons. For example, for people with irritable bowel syndrome (a condition which is experienced as embarrassing) humour appears to be valued as a preferred and officially unrecognised strategy for management which does not appear in formal self-management strategies such as action planning [19]. Men with cancer have been found to use humour and jokes to manage feelings and reduce tensions [13].

In a review of the purpose and function of humour in health [14], three theories of how humour and health might be linked are explored: Superiority Theory or Tendentious or Disparagement Theory (Hobbes 1588–1679): An aggressive form of humour which takes pleasure in others’ failings or discomfort, this includes self-deprecating humour used against the self; Incongruity Theory (Kant 1724–1804): Humour where the punch line or resolution is inconsistent or incongruous with the set-up; and Relief or Release Theory (Freud 1856–1938): Humour released by ‘excess’ nervous energy which actually masks other motives or desires.

Humour and laughter can be seen as having a direct and physiological effect on health, as well as an indirect effect by enhancing coping abilities so moderating stress. McCreaddie and Wiggins [14] found limited evidence on the direct effects of humour but wider acceptance of the evidence for indirect effects. They question whether certain types of humour, in particular the self-depreciation widely used by patients, is adaptive (indicative of good social skills and ability to cope) or maladaptive (indicative of self-loathing). A further utility of humour in the management of long-term conditions relates to a link between humour, hierarchy and subversion. In the context of interprofessional relationships humour has been associated with a strategy used by rank and file members to resist and attenuate instructions coming from powerful professionals [21]. In the context of self-management, which can be construed in a part as delegated work to patients, there is a similar potential means by which humour can be used by patients to subvert, challenge or resist the instructions of health professionals which at the same time enables an empowering and positive means of being able to self-manage. A less subservient approach to professionals and strategic non-compliance have been identified as essential elements in achieving a balance in a person’s life and attaining a sense of well-being in managing diabetes [22].

One purpose of cartoons is to help provide clarity, insight and understanding [23]. The use of pictures or cartoons in patient information has been shown to be more effective than using text alone [15, 24–26]. This has most salience where health literacy is conceptualised as a personal asset, orientated to developing skills and capacities which enable individuals to exert more mastery and control over their health and the factors that influence health and illness [27]. Non-text-based approaches or visual methods including collage, photo-elicitation (where photos are used as part of an interview), self-portraits and other drawing-based activities such as relational maps and timelines are increasingly used in research. Drawings have been used as an insightful research method to explore the ways in which people understand and make sense of their illness conditions, in particular for people with low levels of literacy [28]. Here we extended this rationale to the development of information resources for long-term conditions.

One of the specific purposes for developing cartoons to accompany self-management information could be to address concerns related to health literacy (conceptualised as a risk and asset) [27]. We see the use of cartoons as addressing health literacy in a number of ways: To impart humour (which improves recall and understanding of information) [24]; to provide resonance with shared experiences (a visual reminder that other people have similar problems and have found solutions); to communicate complex ideas (which often take a lot of words to explain and a cartoon may provide a simplified short-cut); and to illustrate, illuminate and show ways of dealing with embarrassing situations (people unable to read about other people’s health problems may feel so embarrassed about their symptoms that they are unable to talk about them – a cartoon showing such symptoms might be enough to prompt help-seeking). Cartoons can be used to present situations in a non-threatening way and their simplicity can give a clear focus to an idea or thought; it has been found that photos can be confusing when there is too much detail [24].

It is recognised that patients and recipients of information should be consulted to ensure that cartoons or pictures are meaningful and not used in a way which is counter-productive [24]. However, there is currently nothing in the literature which explores how ideas for cartoons can be generated and translated in a collective and reciprocal way to engender engagement with self-management support. It appears that in the main, the ideas result from clinicians and researchers who commission illustrators, but it is unclear whether or how patients’ voices or experiences are incorporated into the ideas for translating messages and ideas for support for living with a long-term condition.

The research question of interest to us is: Can patient experiences and views be translated into cartoons which are acceptable and useful in self-management information? Here we start by outlining an approach to use lay views and patient experiences to create cartoons during the development of self-management guidebooks. We then use the most recently developed guidebook for people with early stage chronic kidney disease (CDK) as an exemplar of the methods used to develop and refine cartoons and as the subject for a qualitative evaluation of their impact.

Outline of an approach using patient experiences to develop cartoons

Over the past two decades, we have refined an approach to develop cartoons for use in patient information. A series of self-management guidebooks have been written with and for people with inflammatory bowel disease, irritable bowel syndrome, diabetes, chronic obstructive pulmonary disease and CKD [29–33]. In the guidebooks, lay informed experiences have been given equal weight to medically and clinically informed evidence. To collect and synthesise views and experiences we used qualitative methods (focus groups) and thematic analysis to generate topics and themes. We tapped into the core feature of the focus group process: the interaction between participants was used to generate a collective voice that could translate into the development of a cartoon image [34]. The cartoons were intended to encourage engagement with self-management and convey the universality of daily dilemmas and uncertainties of living with a long-term condition to patients to highlight the relevancy of the information.

The cartoon development drew on discussions about patient practices and experiences concerning: the experience of living with the condition, common situations, dilemmas of day-to-day management, the opportunities and difficulties of making decisions or choices, or the uncertainties associated with the condition. For each booklet, a list of topics for cartoons was developed by the research team using the empirical data and linked to a patient quote if possible. A cartoonist willing to take on the brief was found and an iterative process was used to refine the cartoons.

An exemplar of the approach: the ‘keeping your kidneys healthy’ guidebook

This exemplar is used because it is the most recent guidebook using the most refined methodology. The development and trial were part of the NIHR CLAHRC (Collaboration for Leadership in Applied Health Research and Care) for Greater Manchester; a five year programme of research which commenced in 2008 aiming to improve health care and reduce inequalities in health for people living with chronic vascular conditions.

Ethical research approval was obtained (NRES Committee NorthWest Greater Manchester Central REC reference:11/NW0855).

The cartoon development phase

Participants for the focus groups were recruited by nursing staff at a large practice in Greater Manchester that had been involved in earlier work related to the CLAHRC programme. The nurses used personal face-to-face or phone invitations, those expressing interest were contacted by the research team to obtain informed consent. This practice had a well-established register from which people with early stage CDK could be easily identified. The focus groups were held on the practice premises and led by AK and CB. We were aware that discussing CKD might raise problems due to the reluctance of primary care staff to disclose the early stages of kidney disease to patients [35], so we used the following introduction to the focus group:

‘We’ve invited you to this focus group because you are on the list (or register) your practice has of people who might be at risk of going on to develop problems with their kidneys. This register is quite a new way of doing things for the NHS and it is being done because it is thought to be important to keep a close check on you to maintain your health. We want to know what you think about that, about how you or others should be told and what sort of information might be helpful or unhelpful.’

All participants gave written informed consent prior to the focus group. The focus groups were audio-recorded and transcribed. Notes were taken during the meetings and field notes were compiled afterwards.

Analysis

Transcripts of the focus groups were read to draw out themes related to participants’ expressed need for information and discussions around experiences of living with CKD. These themes provided a structure for the content of the guidebook. Themes on patient experience of CKD taken from existing qualitative literature helped to provide a coding framework for the analysis. Memos using Word documents were used to help create categories of information need and concerns. AK conducted the analysis and wrote the first draft of the book (revised by other members of the team). Further analysis determined where there was a collective voice emerging from the focus groups, concerning experiences or information need and this was translated into topics for potential cartoons. The team then held a series of iterative discussions to determine the final list of cartoon topics, to find quotes which best exemplified the cartoon topic and to comment on the early versions of the cartoons, some of which were redrawn several times before they were agreed on.

The cartoon evaluation phase

Participants were recruited from those who consented to take part in a randomised controlled trial; the BRIGHT (Bringing Information and Guided Help Together) Trial [33]. The BRIGHT trial was a two-arm, patient level randomised RCT evaluating a complex self-management intervention which aimed to support the maintenance of vascular health in patients with early stage CKD. The intervention comprised the CKD guidebook and tailored access to local community resources with telephone support. Participants had a clinical diagnosis of stage 3 CKD and were identified from disease registers at GP practices. GPs then identified those they considered had been made aware of their CKD and who were able to communicate in English. They excluded patients receiving palliative care or who had reduced capacity to consent. The BRIGHT intervention significantly improved patient outcomes [paper in preparation].

The cartoon evaluation formed part of the process evaluation of the BRIGHT trial [33]. Purposeful sampling was undertaken of those in the intervention group who gave consent to be contacted for a face-to-face interview (see Figure 1 for details). The sample aimed to include a broad range of respondents from a range of practice locations. Participants were sampled for two separate qualitative studies within the process evaluation: 1) an exploration of the feasibility of the telephone support intervention [36]; and 2) a longitudinal study to inform and explain the results of the main trial. Individuals only took part in one of these studies. All participants gave written informed consent prior to the qualitative interviews.

Questions on the cartoons formed a small part of both in-depth interview schedules and interviews with these questions took place after the participant had been given the full intervention. Participants were asked their opinion on the use of cartoons and humour in patient information and were then asked to look at the cartoons and to engage in a ‘think aloud’ discussion about each cartoon [37]. Using think-aloud is said to ‘uncover usually covert cognitive process and eliminate assumptions in analysis’ [38]. Questions used to prompt the think aloud process included: ‘what do you think about the cartoons, what are they saying?’ ‘What’s the point that’s trying to make do you think?’ ‘What does that say to you?’ ‘Just give me your interpretation of what you think it is saying.’

The interviews (conducted by GDW and RB in participants’ homes) were all audio-recorded and transcribed. The data were analysed and coded by AK to generate themes related to opinions about the cartoons and their usefulness in information.

Analysis

The analysis was focused on the sections of the interviews where the ‘think aloud’ method was used. Opinions on each of the cartoons were compared across cases to determine how they were interpreted and understood. Charting and memos were used to highlight cartoons where there were varying interpretations and understanding. The themes which emerged were discussed with members of the team who conducted the interviews and contemporaneous field notes were referred to to ensure rigour in the interpretation.

Feelings invoked by cartoons

I don’t get it: interpreting cartoons

Not everyone ‘got’ what the cartoons set out to depict and some of the cartoons were found difficult to interpret. Interestingly, many offered alternative explanations to that intended which made more personal sense. Cartoons present layers of meaning and can be construed as subversive, so the reading of them can trigger off different ideas for people. In using cartoons, we wanted to show the uncertainties and frustrations of life with CKD as well as to amuse, invoke recognition and promote reflection.

Added value or added confusion?