Storytelling as a KT strategy in child health: croup as an illustrative example

1. Storytelling as a KT strategy in child health: croup as an illustrative example KT Canada Seminar Series May 13, 2010 Lisa Hartling, BScPT, MSc, PhD Shannon Scott, PhD Terry Klassen, MD, MSc Alberta Research Centre for Health Evidence

2. Overview • Context • Story development • Randomized controlled trial • Qualitative follow-up • Future directions

3. The story… http://osiris.sunderland.ac.uk/autism/sec.htm Parker Beck a 2 year old boy who developed autism Experienced dramatic improvement after receiving iv secretin This story had a drammatic effect on parents of children with autism Dateline, Oct. 7, 1998

4. The evidence… Pediatrics and Child Health 2004;9:244-245 14 RCTs and none found evidence to support use of secretin in autism

5. The power of stories over statistics BMJ 2003;327:1424 Neonatal Jaundice Infant safety on aeroplanes

6. The writing cure… New York Times Magazine/ April 18, 2004 Can understanding narrative make you a better doctor? Once upon a time, until the last century or so, doctors had little in their tool bags except their humanity with which to channel that mysterious thing we call a healing encounter: that charged interaction – personal and impersonal, physical and spiritual – upon which so much depends. Now that blood tests have replaced bloodletting, how can we make that interaction be more rewarding?

7. An inverse relationship? Intuition/narrative Science

8. Mechanism of action? Dawes RA. J Econ Behav Organ 1999;39:29-40 The human brain seems to be built to process stories better than other forms of input

9. Consumer demand for information and involvement in medical care Patient/parent anxiety due to unmet information needs Need for more effective communication (of evidence) between consumers and health care providers Shortcomings of existing methods of knowledge transfer in the ED (e.g., standard patient information handouts) The potential power of storytelling in communicating information, influencing attitude and affecting behavior Background

10. Background: our intent Deliver health evidence Place evidence in the context of real experiences Attend to the different needs of parents

11. Hypothesis • Stories compared to standard information sheets would produce different results in terms of parental outcomes, child symptoms, and resource use.

12. Developing stories • Creative writer • Pilot testing: individual feedback • Edited stories • Developed booklets • Testing: focus groups

16. Challenges and considerations • Staying true to the story versus being evidence-based • How much additional information or evidence to incorporate • Information on interventions for which there is no evidence • Use of information from the internet • Balance between being inclusive and generalizable versus being succinct

17. Challenges and considerations Involvement of end-user group Theoretical underpinnings

18. Evaluating story booklets • Randomized controlled trial: 2 sites • Population: parents attending the emergency department with a child with croup • Intervention: story booklets • Comparison: standard information sheet

19. Outcomes • Primary: • Change in anxiety from recruitment to discharge from ED • State Trait Anxiety Inventory (STAI-S, Form Y) • Secondary: • Expected future anxiety • Event impact • Parental knowledge • Parental satisfaction • Parental decisional regret • Return to see healthcare professional • Healthcare and resource utilization • Ongoing croup symptoms

20. Participants 255 parents recruited 129 story booklets randomized 126 information sheets 99 (77%) 97 (77%) primary outcome 123 (95%) 119 (94%) day 1 day 3 116 (90%) 118 (94%)

21. Results • Primary outcome: change in anxiety from recruitment to discharge

22. Results • Decision regret • It was the right decision. • I regret the choice that was made. • I would go for the same choice if I had to do it over again. • The choice did my child a lot of harm. • The decision was a wise one. • Significantly greater decision regret among the story group (p<0.001)

23. Results • Ongoing croup symptoms: • Median days to no symptoms 3 vs. 5 • Survival distributions significantly different (p=0.032)

24. Interpretation • No significant difference for primary outcome (change in anxiety) • Reasons: • Nature of illness: acute, self-limiting • Effectiveness of treatment • Timing of enrolment vis-à-vis parents’ needs

25. Interpretation • Story group showed greater decision regret: • Due to care or information they received • Parents felt they could have managed at home • Story group reported quicker resolution of symptoms: • Different management at home • Different perception of child’s symptoms

26. What this work adds • Model for research in this area • Evaluated non-medical intervention using accepted biomedical model of investigation • Results provide a piece to the puzzle, contributing to a growing evidence base identifying when, where, and for whom stories may be most effective.

27. Lessons learned • Development work and involvement of end-users • identify end-user information needs, important outcomes, preferences for formatting and presentation of information • Clearly define intent of stories • Mixed methods approach to testing and evaluation • Effectiveness and mechanisms of action

28. Co-investigators: Dr. Terry Klassen Dr. Shannon Scott Dr. David Johnson Dr. Ted Bishop Dr. Jamie Brehaut Dr. Gillian Currie Mr. Ben Vandermeer Dr. Mandi Newton Acknowledgements • Nurse Coordinators: • Erin Logue (SCH) • Janie Williamson (ACH) • Funding: CIHR Team Grant in Pediatric Emergency Medicine

29. Stories as a KT strategy for parents: A Qualitative Study Shannon Scott Lisa Hartling Terry Klassen Kathy O’Leary (Project Coordinator) Funded by: Women and Children’s Health Research Institute, University of Alberta, Edmonton, AB

30. Background • Why the need for a complementary qualitative study? • Contextualize the RCT findings • Identify the barriers and supports to using stories as a KT strategy for parents

31. Background Once viewed as philosophically incongruent with experimental research, qualitative research is now recognized for its ability to add a dimension to RCTs Qualitative research emphasizes understanding complex, interrelated phenomena

32. Methods • Design: • Exploratory descriptive study was used to understand how stories are used by parents presenting to the ED with a child with croup. • Data were collected through semi-structured interviews of parents post-visit to the ED • All interviews were conducted over the phone by nurse researcher trained in qualitative methodology (K O’L) • Ethics approval through Universities of Alberta and Calgary

33. Methods • Interviews explored: • Parents’ perceptions of the effectiveness of the storybooks • Parents’ experiences using the storybooks • Parents’ perceptions on elements of effective stories • Interview questions moved from the general to the specific

34. Data analysis • Data collection and analysis occurred concurrently • Iterative process of content analysis: • 1) coding interviews • 2) sorting data to identify patterns • 3) generalizing constructs and theories • 4) memoing to note personal reflections and insights

35. Findings • 22 participants • Three themes emerged from the interviews • 1) Parental perceptions of the storybooks (intervention) • 2) Parental perceptions of having a child with croup • 3) Parental perceptions of outcomes related to storybook use

36. Parental perceptions of the storybooks Accurately reflected their own experiences Appreciated the 3 book format Acknowledgement that not all information was relevant for their specific situation, but useful for future occurrences. Variability in terms of appropriateness of the reading level

37. Parental perceptions of the storybooks Engaging and easier to read than the ’standard information sheets.’ Held the readers’ interest and were faster to read ‘Standard information sheets’ took longer to read and assimilate

38. Parental perceptions of the storybooks • Some commented that they were unsure who the books were meant for – the parents or the children. • Parents saw the books as having a 2-fold purpose: • Education for parents about the diagnosis and treatment of croup • Providing a distraction for their children while they waited with their parents in the ED.

39. Parental perceptions of having a child with croup Situational factors and individual parents’ learning needs dictated how the parents used the storybooks For most parents, the first reading of the books occurred in the ED Variability in how the parents read the books – “skimming or flipping through” to careful reading to a few parents who found the ED too distracting

40. Parental perceptions of having a child with croup Portability of the books allowed the books to be used in different locations Many parents described reading the books more than once and some parents had passed the books onto other families It was reassuring to have written information to back up verbal explanations/instructions Appreciated not having the added pressure of having to remember instructions from the ED - stressful

41. Parental perceptions of having a child with croup • Perceptions about the ED visit • Child’s experience with croup – anxiety provoking • Uncertainty • When to seek help • Worrisome was when to seek help • When thinking retrospectively parents said that if they had the books earlier they could be better able to determine: • severity of croup & when to get help

42. Parental perceptions of having a child with croup Parents stated that the credibility of the storybooks was enhanced due to similarity (in terms of treatment) between their experience and what was described in the storybooks. Parents reported that they would be able to manage future episodes of croup

43. Outcomes associated with the storybooks • Two positive outcomes associated with using the books: • Feeling reassured that they ‘did the right thing’ • Reduction in uncertainty after reading the stories • Uncertainty about the diagnosis, treatment and severity of their child’s illness was lessened by the provision of information (knowledge) • 2 important aspects of ‘knowing’ • Knowing what to expect • Knowing what to do

44. Advantages of storybooks over standard care sheets Attractiveness of storybooks – more engaging Appeals to and can be shared with the child Emotional aspects of the story give support to anxious parents (validates emotions) Story gives “context” to the information Story describes how information can be practically used Stories are written in plainer language – easier for English as a second language

45. What this means for clinical practice • Providing consistent messages (information) to parents is critical (trust, reassurance) • Therefore important that clinicians be actively involved in narrative activities • Offering information in various ‘forms’ (e.g., verbal, written, narrative, etc.) facilitates coping with stressful situation

46. What does this mean for knowledge translation? • Narrative formats for sharing research-based knowledge with parents (consumers) is innovative • More research is required • Future possibilities • Transferring research to parents – does this facilitate practitioner KT? • Simultaneous KT strategies for parents and health care professionals

47. Future directions • Alberta Health Services Child Health Working Group • Development and implementation of asthma pathways for practitioners • Complement with narrative-based information for parents/children • Three-staged research program • Identify parents’ information needs and preferences • Develop and pilot test narrative products • Rigorous evaluation with mixed methods approach

48. Thank you. The Alberta Research Centre for Health Evidence Edmonton, Alberta, Canada