“You Can't Fix Your Brain”: Exploring concussion experiences of children and parents

Campbell, Alyson; Plourde, Vickie; Hartling, Lisa; Scott, Shannon D.

doi:10.1111/jspn.12357

Cited by 10 publications

(7 citation statements)

References 47 publications

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“…In a study examining the experiences of children with concussion and their parents, a key finding was that the children and young adults preferred videoconferencing and video formats, and also wanted to connect with peers to learn directly from people who had been through similar experiences. In contrast, parents did not share the same interest in videos and videoconferencing interactions [ 47 ].…”

Section: Introductionmentioning

confidence: 99%

The SUCCESS Peer Mentoring Program for College Students with Concussion: Preliminary Results of a Mobile Technology Delivered Intervention

O’Brien

Kemp

Gartell

et al. 2023

IJERPH

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Concussions are caused by a hit or blow to the head that alters normal brain functioning. The Success in College after Concussion with Effective Student Supports (SUCCESS) program was developed to provide students with psychosocial support and resources—both key components of concussion management—to assist in recovery and return-to-learn following concussion. In this preliminary evaluation of intervention efficacy, SUCCESS was delivered through a mobile application connecting mentors (students who have recovered from concussion and successfully returned to school) with mentees who were currently recovering. Mentor–mentee pairs met virtually through the app, using chat and videoconferencing features to share support, resources, and program-specific educational materials. Results from 16 mentoring pairs showed that mentee symptoms (V = 119, p = 0.009) and academic problems decreased (V = 114.5, p = 0.002), while academic self-efficacy increased (V = 13.5, p = 0.009) following mentoring. As expected, mentor measures were stable, indicating that providing mentoring did not exacerbate previously resolved concussion complaints. Virtual peer mentoring provided through a mobile application may be a feasible intervention to support academic success and psychosocial processing during recovery for college students with concussion.

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Section: Introductionmentioning

confidence: 99%

The SUCCESS Peer Mentoring Program for College Students with Concussion: Preliminary Results of a Mobile Technology Delivered Intervention

O’Brien

Kemp

Gartell

et al. 2023

IJERPH

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“…The P-PAG has been critical to advancing our research program and the outputs have been extensive. P-PAG members have participated in the co-development of over 40 KT tools for parents, provided input on methods and recruitment strategies for numerous research projects [ 26 – 40 ] and informed dissemination strategies. Other researchers as well as trainees (undergraduate and graduate students, post-doctoral fellows) have accessed the group for input on a range of projects and initiatives.…”

Section: Discussionmentioning

confidence: 99%

Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health

Hartling,

Elliott,

Mabbott

et al. 2024

Res Involv Engagem

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Background In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss our experiences collaborating with the group over a multi-year period. Methods We conducted year-end surveys and interviews of group members to understand parents’ perceptions of their experiences, group management, researcher interaction, and other outcomes of advisory group participation from 2018 to 2021. We applied a mixed methods approach, collecting and analyzing both quantitative (survey) and qualitative (survey/interview) data. Survey data were analyzed by term using descriptive statistics (i.e., frequencies, percentages). Open-ended survey responses were analyzed by conventional content analysis. Interview data were analysed thematically. Results Year-end survey response rates and interview participation varied over the years. Responses to evaluation questions were generally positive and most improved over time. Results prompted changes to improve P-PAG operations, such as changes to location of meetings, communications about the group’s purpose, offering sufficient context for discussion items, and providing feedback about how members’ input was used. Themes identified from the qualitative data related to the importance of certain aspects of group functioning, positive views of the group’s current management, and potential areas for improvement. Parents regularly expressed a desire for more diversity in the group’s membership and an interest in hearing more about how the research program’s activities fit into the broader healthcare system and their impacts on health outcomes. Conclusions Our experience in establishing, managing, and evaluating a parent advisory group over many years has resulted in valuable insights regarding patient engagement in health research and sustaining an advisory group over time. We have learned that an intentional and iterative approach with regular evaluations and responsive changes has been essential for fostering meaningful engagement. Significant resources are required to maintain the group; in turn, the group has made substantial and diverse contributions to the research program and its outputs.

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“…The findings from these interviews informed the content and format of the web-based infographic. The sample demographics and full results of this qualitative study are reported by Campbell et al [ 28 ].…”

Section: Methodsmentioning

confidence: 99%

“…The development of the infographic prototype involved first creating a composite infographic skeleton , which integrated the information needs and preferences of parents and children (as reported in the qualitative interviews) with the best available research on pediatric concussion management [ 28 - 30 ]. This integration determined the content for the infographic.…”

Section: Methodsmentioning

confidence: 99%

Parental Knowledge, Self-confidence, and Usability Evaluation of a Web-Based Infographic for Pediatric Concussion: Multimethod Study

Campbell¹,

Hartling²,

Plourde³

et al. 2022

JMIR Pediatr Parent

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Background Concussions, which are known as mild traumatic brain injuries, are complex injuries caused by direct or indirect blows to the head and are increasingly being recognized as a significant public health concern for children and their families. Previous research has identified few studies examining the efficacy of educational interventions on parental concussion knowledge. The aim of this research was to actively work together with children who have experienced a concussion and their parents to develop, refine, and evaluate the usability of a web-based infographic for pediatric concussion. Objective The objective of this study was to report on the usability of the infographic, parental knowledge, and self-confidence in pediatric concussion knowledge before and after exposure to the infographic. Methods A multiphase, multimethod research design using patient engagement techniques was used to develop a web-based infographic. For this phase of the research (usability, knowledge, and confidence evaluation), parents who could communicate in English were recruited via social media platforms and invited to complete web-based questionnaires. Electronic preintervention and postintervention questionnaires were administered to parents to assess changes to concussion knowledge and confidence after viewing the infographic. A usability questionnaire with 11 items was also completed. Results A web-based, infographic was developed. The infographic is intended for parents and children and incorporates information that parents and children identified as both wants and needs about concussion alongside the best available research evidence on pediatric concussion. A total of 31 surveys were completed by parents. The mean scores for each item on the usability surveys ranged from 8.03 (SD 1.70) to 9.26 (SD 1.09) on a 10-point Likert scale, indicating that the usability components of the infographic were largely positive. There was no statistically significant difference between preintervention and postintervention knowledge scores (Z=−0.593; P=.55; both preintervention and postintervention knowledge scores had a median of 9 out of 10). In contrast, there was a statistically significant difference between preintervention (mean 3.9/5, SD 0.56) and postintervention (mean 4.4/5, SD 0.44) confidence in knowledge scores (t30=−5.083; P<.001). Conclusions Our results demonstrate that parents positively rated a web-based, infographic for pediatric concussion. In addition, although there was no statistically significant difference overall in parents’ knowledge scores before and after viewing the infographic, their confidence in their knowledge did significantly increase. These results suggest that using a web-based infographic as a knowledge translation intervention may be useful in increasing parents’ confidence in managing their child’s concussion.

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“You Can't Fix Your Brain”: Exploring concussion experiences of children and parents

Abstract: To explore the experiences, information needs and preferences of children who have had a concussion and their parents who have cared for them.Design: Qualitative description.

Cited by 10 publications

References 47 publications

The SUCCESS Peer Mentoring Program for College Students with Concussion: Preliminary Results of a Mobile Technology Delivered Intervention

The SUCCESS Peer Mentoring Program for College Students with Concussion: Preliminary Results of a Mobile Technology Delivered Intervention

Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health

Parental Knowledge, Self-confidence, and Usability Evaluation of a Web-Based Infographic for Pediatric Concussion: Multimethod Study

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