Development and Usability Evaluation of an Art and Narrative-Based Knowledge Translation Tool for Parents With a Child With Pediatric Chronic Pain: Multi-Method Study

Abstract

BackgroundChronic pain in childhood is increasingly being recognized as a significant clinical problem for children and their families. Previous research has identified that families want information about the causes of their child’s chronic pain, treatment options, and effective strategies to help their child cope with the pain. Unfortunately, parents have reported that finding this information can be challenging.ObjectiveThe aim of this study was to actively work together with children attending a pediatric chronic pain clinic and their parents to develop, refine, and evaluate the usability of an art and narrative-based electronic book (e-book) for pediatric chronic pain.MethodsA multiphase, multi-method research design employing patient engagement techniques was used to develop, refine, and evaluate the usability of an art and narrative based e-book for pediatric chronic pain management to facilitate knowledge translation for parents with a child with chronic pain. The multiple phases included the following: (1) qualitative interviews to compile parents’ narratives using qualitative interviews; (2) qualitative data analysis; (3) development of an e-book prototype; (4) expert clinician feedback; (5) parent usability evaluation, knowledge change, and confidence in knowledge responses using an electronic survey; (6) e-book refinement; and (7) dissemination of the e-book.ResultsA 48-page e-book was developed to characterize the experiences of a family living with a child with chronic pain. The e-book was a composite narrative of the parent interviews and encompassed descriptions of the effects the condition has on each member of the family. This was merged with the best available research evidence on the day-to-day management of pediatric chronic pain. The e-book was vetted for clinical accuracy by expert pediatric pain clinicians. All parents that participated in the usability evaluation (N=14) agreed or strongly agreed the content of the e-book was easy to understand and stated that they would recommend the e-book to other families who have children with chronic pain. Our research identified up to a 21.4% increase in knowledge after using the e-book, and paired t tests demonstrated a statistically significant difference in confidence in answering two of the five knowledge questions (chronic pain is a disease involving changes in the nervous system; the use of ibuprofen is usually effective at controlling chronic pain); t13=0.165, P=.001 and t13=0.336, P=.002, respectively, after being exposed to the e-book.ConclusionsOur results demonstrate that parents positively rated an e-book developed for parents with a child with chronic pain. Our results also identify that overall, parents’ knowledge increased after using the e-book, and confidence in their knowledge about chronic pain and its management increased in two aspects after e-book exposure. These results suggest that art and narrative-based knowledge translation interventions may be useful in transferring complex health information to parents.

#postbabyhankypanky: An Empirically Based Knowledge Sharing Initiative About Sex and the Transition to Parenthood

“…Generally, responses from both parents and healthcare providers indicated that the videos were effective in normalizing sexual concerns and increasing perceptions of self-efficacy for coping and communication related to sexuality in the transition to parenthood. Such findings are in line with other knowledge translation tools that have been found to normalize patient experiences and consequently reduce distress (Reid et al, 2017 ).…”

“…Although viewers appreciated our use of racially neutral characters, one of whom was conceived to be gender-neutral, other respondents perceived the videos to be too hetero- and cis-normative. Identifying with the characters depicted in KT materials is essential to maximize impact (Lohan, Aventin, Oliffe, Han, & Bottorff, 2015 ; Reid et al, 2017 ). Consistent with shifts in the fields of sex and relationships research to prioritize inclusivity (Andersen & Zou, 2015 ), our ongoing and future research makes a concerted effort to recruit sex and gender diverse couples and our future videos will be more responsive in this respect.…”

Pain Neuroscience Education for Children with Functional Abdominal Pain Disorders: A Randomized Comparative Pilot Study

“…Third, previous studies providing evidence for the effect of PNE in healthy children [ 10 ] and the context of pediatric pain has mainly focused on attitudes and knowledge of pain physiology, instead of pain-related outcomes such as physical functioning, pain intensity and pain-related fear [ 14 , 15 ]. Despite its frequent use in the evaluation of functional disability in the context of functional abdominal pain [ 39 , 40 ], it should be noted that the FDI was initially developed to assess perceived difficulty in a variety of activities that are relevant to children and adolescents, rather than to assess limitations specific to a particular pediatric condition such as FAPDs [ 25 ].…”

“…The limited studies investigating PNE(-based) interventions in the pediatric chronic pain context, only include (healthy) adolescents and their parents [ 10 , 14 , 15 ]. Drawing upon available evidence in adult and adolescent samples, it is expected that PNE provided to children (6–12 years) and their parents will lead to improved pain-related outcomes in both the child and the parents.…”

From Research Participants to Video Stars: Engaging Families in End-of-Grant Knowledge Translation

“…There exists a need to ensure that practice initiatives stemming from family nursing research are sustainable, which “requires partnerships, collaboration, and strong relationships between researchers and knowledge users” (Bell, 2014, p. 8). While examples of family inclusion in end-of-grant KT are relatively absent in the literature, recent examples of unique, strengths-based approaches to KT include working with “children attending a pediatric chronic pain clinic and their parents to develop, refine, and evaluate the usability of an art and narrative-based electronic book (e-book) for pediatric chronic pain” (Reid et al, 2017, p. 1). Our example lends itself well to the budding forms of participant-led KT in family nursing research.…”