The project coordinator (trained in qualitative methods and supervised by the principal investigator [PI]) conducted semistructured qualitative interviews with a purposeful sample of family members with a child with chronic pain from the Stollery Children’s Hospital (Edmonton, Alberta, Canada). Semistructured interviews ensured the acquisition of rich description and data while simultaneously allowing children and parents the freedom to respond and illustrate their experiences with pediatric chronic pain [35]. Questions focused exclusively on the experience of having a child with chronic pain and moved from general to specific, with interviews later in the data collection period becoming increasingly focused. Themes that were explored in the interviews included the effects of having a child with chronic pain on family life, social life, vacations, and work schedules; feelings regarding the diagnosis; expenses associated with having a child with chronic pain; experiences with the chronic pain clinic and health professionals involved; and parents’ hopes or wishes. The interviews were digitally captured and cleaned before the coordinator coded the interviews.

Data collection and analysis occurred iteratively [35,36]. As analysis progressed, the interviews became more precise and purposeful [37]. Data collection continued until saturation of major categories [38] was achieved. Analysis occurred in three phases: coding, categorizing, and developing themes. Coding of the interview transcripts was led by the project coordinator and supervised by the PI (SS). Similar codes were then grouped into categories, and larger themes with memos were used to capture the analytic process. NVIVO 11 (QSR International Pty Ltd.) version 11, 2015 was used to facilitate data management during the analytic phase. Trustworthiness of the findings was ensured through iterative data collection and analysis. A summary of the interview themes (effect on the family, emotional experiences with chronic pain, experiences with the chronic pain clinic, families’ information needs, and families’ hopes and needs) with accompanying data excerpts from the interviews was shared with a creative writer who worked with the research team to develop the narrative for the e-book.

The development of the e-book prototype involved the creation of the composite narrative (compilation of common themes from the interviews), integrating the best available research on pediatric chronic pain management into the composite narratives, development of the artwork, and graphic display of the narrative and artwork. Our team worked with a creative writer, illustrator, graphic designer, and videographer to develop the e-book. We embedded information icons throughout the e-book to provide the best available research evidence on key pediatric chronic pain principles, as well as clear language explanations. Furthermore, additional resources (ie, breathing exercises) were also embedded to help children and families cope with managing chronic pain.

After the e-book prototype was developed, it was shared with a multidisciplinary team of clinician experts at the pediatric chronic pain clinic that included a physician, psychologist, and nurse practitioner. The pediatric chronic pain service at the Stollery Children’s Hospital (Edmonton, Alberta, Canada) provides treatment and care for children 17 years and below who experience chronic, difficult to manage pain. The clinicians reviewed the e-book for knowledge accuracy and are ideally suited for this assessment as they are well abreast of the best available research evidence in this highly specialized field.

A link to prototypes of the e-book, usability test, and pre and post knowledge tests were emailed (by clinic staff) to all 25 parents with a valid email address in the Stollery chronic pain clinic [39,40] database. Consent was implied if the Web-based survey was completed and submitted. Parents were asked to complete a Web-based survey that assessed their perceptions of the prototype using a 5-point Likert scale and included elements informed by a systematic search of over 180 usability evaluations [41]: (1) usability, (2) aesthetics, (3) language, (4) level of engagement, (5) ease-of-use, (6) knowledge provided, (7) preference of form over traditional dissemination venues, (8) value-added (please see questions in Multimedia Appendix 1). Furthermore, parents had the opportunity to provide free text feedback on areas that required revisions or more information. To evaluate parents’ knowledge of pain, parents were asked to answer five true or false knowledge questions about pediatric chronic pain and to rate their level of confidence in their responses before viewing the e-book. Evaluation of pain knowledge focused on five main topics: (1) what is chronic pain, (2) what is acute pain, (3) effects of chronic pain on children, (4) how to treat chronic pain, and (5) ibuprofen use and chronic pain. Parents rated their level of confidence in their response to each question using a 5-point Likert scale (very sure to very unsure). After completing the baseline knowledge test, the parents were to read the e-book, and knowledge questions were answered again to assess short-term knowledge changes. Participants were again asked to rate their confidence.

The data was cleaned and managed according to industry standards. Data was entered into Statistical Package for the Social Sciences (SPSS) version 21 (IBM Corp), and descriptive statistics (eg, frequencies), measures of central tendency, as well as paired t tests were completed. To uncover potential usability issues, the free text data was analyzed using content analysis, and any suggestions for revision were grouped and examined [42].

On the basis of the results from the clinician experts and the parent usability evaluation, changes were made to the e-book.

The finalized e-book was disseminated through the Stollery Children’s Hospital via the chronic pain team and the Pain 101 course for parents (a clinic specific course for children and parents who are cared for by the pediatric chronic pain team) through established social media platforms including investigators’ Web pages (www.echo.ualberta.ca) and TREKK (www.trekk.ca), a network of health professionals and parents whose goals are to improve emergency care for children. Each of these Web pages is enabled with Google Analytics, thereby allowing investigators to track the visitor behavior attributes such as the number of visits to the e-tools, number of page views, and the average length of time viewing each e-tool [36]. A PDF version of the book was also shared on the local Alberta Health Services website and added to the chronic pain toolkit on the Canadian Association of Paediatric Health Centres Web page. After usability testing was completed on the e-book version, a hard copy of the book was published and distributed to junior high and high schools in and around the Edmonton area, local libraries, families seeking care through the pediatric pain clinic, and the two major children’s hospitals in Alberta. An audiobook was generated to serve as an accompaniment for the e-book or hardcopy book.

The creative writer generated a story based on interviews with parents or caregivers of 17 children presenting to the chronic pain clinic. The 48-page book was written in the perspective of a mother and was designed to characterize the experiences of a family living with a child with chronic pain (Figure 1). The e-book encompassed descriptions of the effects the condition plays on each member of the family, including the mother, father, siblings, and the child living with chronic pain. The story highlighted the difficulties and struggles of finding resources to improve the quality of life of a child with chronic pain (Figure 2). To ensure readers understood certain terms, definitions were provided in the index at the end of the e-book. This is further complemented by a series of exercise suggestions that families struggling with chronic pain may use (Figures 3 and 4).

Evaluation of the chronic pain e-book included assessments of usability and pretest and posttests of pain knowledge, as well as confidence in knowledge responses. Emails were sent to 25 parents from the Stollery chronic pain clinic (all parents with valid email addresses in the clinic database); 22 surveys were started and 14 were fully completed. All 14 surveys submitted were completed by females in the household; 13 of the individuals were mothers, and one was a grandmother. Eleven participants completed or had taken some form of postsecondary education, one completed high school, and one had some high school. Eleven participants indicated that their family or child had been dealing with the chronic pain for 2 or more years, two families’ participants indicated that the family had been struggling with the chronic pain for 1 to 2 years, and one participant stated that the family had been struggling with chronic pain for 6 to 12 months. Table 1 describes the demographics of the study population.

Parental reaction to the e-book was generally positive (Figure 5). Usability testing indicated that, in general, parents all agreed or strongly agreed that the e-book was simple to use. Similarly, all parents felt that the book was appealing to look at and that it was interesting to read. In terms of usefulness, again, all parents strongly agreed or agreed that the information provided in the e-book would be useful for families struggling with a child’s chronic pain. When asked if parents felt that they had learned more information from the e-book, 1 parent strongly disagreed, 6 parents were undecided, 6 agreed, and 1 parent strongly agreed.

All 14 parents agreed or strongly agreed that the content of the e-book was easy to understand, and similarly, all parents stated that they would recommend the e-book to other families who have children with chronic pain. When asked if parents preferred the e-book (composite parent narrative with evidence-based information supplemented with illustrations) over standard ways (text only, ie, waiting room pamphlets, discharge instructions, etc.) to receive health information, 2 parents stated that they were undecided, and 12 parents agreed or strongly agreed. Comments on the usability testing survey indicated that parents found that the book paralleled aspects of their own lives. For instance, some comments included:

One parent noted that the outcomes to the solutions provided in the e-book may not be similar across all families:

One parent felt the book was a great resource for knowledge dissemination:

Across the five knowledge topics, we found up to a 21.4% increase in knowledge (range 0-21.4%; Table 2) after being exposed to the e-book. In one of the knowledge topics (topic 4) before reading the e-book, 100% of the participants successfully identified the correct response, and this knowledge was retained post exposure. In three topics, knowledge gains after exposure to the e-book were 7.1% (topic 5), 14.3% (topic 1), and 21.4% (topic 2). In topic 3, there was a knowledge loss of 7.1% after reading the book. We did find a statistically significant difference in confidence of parent answers for two of the five topics (Table 3). Paired t tests showed that there was a statistically significant difference in confidence in answering the true or false questions “chronic pain is a disease involving changes in the nervous system” and “the use of ibuprofen is usually effective at controlling chronic pain.”

This study evaluated the usability of a novel knowledge translation tool for parents of children with chronic pain. Parental results on the usability on the e-book were very positive, knowledge gains ranged from −7.1% to 21.4% after exposure to the e-book, and we identified that the e-book significantly increased parents’ confidence in two areas—(1) understanding that chronic pain is a disease involving the nervous system and (2) in the use of ibuprofen to treat or manage pain. Pain neuroscience education (PNE) is an important aspect of treatment for those who experience chronic pain that has been studied in adults; however, a recent review [43] of PNE for pediatric pain found no published studies that examine how educating parents impacts parental and child function in the context of their child’s pain. Our study is the first to examine how PNE, through the use of art and narrative, has significantly increased parental confidence in this area. Although there have been several books published by pediatric pain experts in recent years aimed at educating and helping parents manage their child’s chronic pain, none have completed an evaluation on the impact of their book on parental understanding of their child’s chronic pain [44-48].

Second, parental data from in our study highlighted the importance of seeing their experience in the e-book. This is not a unique phenomenon, and in fact, in some of our earlier research developing books for parents with a child with croup, we noted similar findings. In that study, parents reported that having elements of the narrative (story) mirror their experience validated their emotional reactions to their child’s condition and also provided assistance in managing the situation [31,32]. Furthermore, parents in our earlier research reported that employing a narrative with elements that mirrored their experience normalized the experience, and they felt reassured that other parents had experienced similar emotions. As a result, these parents stressed that this helped them feel less “alone,” and sharing similar experiences with other parents was important in decreasing their anxiety.

The notion of validation of experiences, identification, or mirroring of personal experience with the narrative, also called homophily, is fundamental to the success of stories [49] as a knowledge translation medium. Abrahamson [50] has identified that the narrative functions as an intellectual, cognitive, and emotional channel between the story and the reader. The mirroring between the narrative and personal experience facilitates engagement or “awakening” of the reader of the e-book to their previous experience [50] and applicability of information to real-life situations [31]. As a result, this parental validation confirms that the early phases of interviewing multiple parents to understand their experience and then working with a creative team to develop a composite narrative (bringing several parents’ experiences together in one story) that incorporates experiences from many parents is fundamental to the success of the e-book as a knowledge translation tool. Kreuter et al [49] further develops the fundamental role of personal identification with the narrative and stresses that stories “work by engaging an audience and modeling behaviors and their consequences.” Building on social cognitive theory, Kreuter and colleagues go further to add that the effect of modeling is increased with similarities in the narrative, particularly identification with story characters. In particular, the collection of interviews to obtain rich experiential data maybe particularly poignant when developing knowledge translation tools for chronic conditions such as pediatric chronic pain. Noel and colleagues stressed that the collection of pain narratives from parents with a child with chronic pain was able to capture the multidimensional nature of their experience [51].

Parents in our study identified that they preferred receiving health information in a narrative form rather than the standard information-based format (no story rather exclusive health information). Parents who evaluated the e-book (n=12) agreed or strongly agreed that they preferred the e-book over standard ways of receiving health information. Again, this finding mirrors our previous research [31,32] where parents preferred receiving health information in a story as compared with the standard medical information sheet. There are several potential reasons to explain this preference, including the ability of stories to promote engagement, stories aesthetic appeal, and their novelty. Oatley [52] offers another reason suggesting that human memory is predominantly story-based, and consequently, new information may be more easily integrated if it corresponds with an existing story component in memory. Schrank et al [53] expand on Oatley’s notion and outline that indexing of new information in human memory (for future reuse) is increased when links can be made between personal experience and the narrative (e-book). These links facilitate assimilation of new health information with existing memory and increase the potential for integration and use of the new information in future situations [31]. The work of Hinyard and Kreuter reinforce this notion and add that whereas there is only an emerging evidence base on using narrative to transfer health information, it is apparent that narrative information is processed differently than nonnarrative information.

Related research also demonstrates that not only do consumers prefer a narrative format, this narrative format can also spur clinically relevant improvements to patient outcomes. For instance, Houston et al [24] tested the effectiveness of cultural appropriate storytelling to improve blood pressure in 230 African Americans with hypertension. They discovered that the patients with baseline uncontrolled blood pressure that received the narrative-based intervention had substantial and significant improvements in blood pressure at 6 months. Although the evidence base on the use of narrative to influence behavior change and clinical outcomes is emerging, it is apparent that there is potential for this modality, given its obvious applicability with conventional human communication and connections.

Our research holds promise for future development, application, and effectiveness testing of art and narrative-based knowledge translation interventions for transferring complex health information to parents. Our results demonstrated that parents positively rated an e-book developed for parents with a child with chronic pain and that they preferred this format over standard information-based approaches to transferring health information. Our results identified that parents experienced −7.1% to 21.4% increases in knowledge after exposure to our e-book and identified that parents’ confidence in their chronic pain management knowledge increased in two aspects after exposure to our art and narrative-based e-book. These novel findings highlight the potential for digital art and narrative-based knowledge translation tools given their congruence with human communication and learning approaches. Our findings suggest that future research employing digital art and narrative-based tools for knowledge transfer is needed and worthwhile, in particular, assessing these approaches with different types of clinical conditions (ie, acute vs chronic health conditions) and different types of parents (ie, demographics, educational levels, ethnic backgrounds, and learning styles).