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.

Aims and objectives To explore parents’ experiences with paediatric fever to understand their needs for information and support. Background Paediatric fever is a normal part of childhood, and multiple episodes of fever are a common occurrence between infancy and adulthood. Despite this expectation, paediatric fever often sparks fear and anxiety amongst parents. Existing research has primarily focused on measuring parental deficits, so a more in‐depth exploration is helpful to understand the complexities of caring for a febrile child. Design Qualitative descriptive study. Methods Purposive sampling of N = 15 parents from a paediatric emergency department presenting with a febrile child. Semi‐structured interviews were conducted in‐person or via telephone. Thematic analysis was used to understand the data in the light of our research question. Reporting follows the consolidated criteria for reporting qualitative research checklist. Results We found themes of (a) parental confidence through caregiving tasks, (b) emergent feelings of inadequacy, (i) referrals and limitations of community practice, (c) information needs and (d) information sources. Whereas parents were initially confident accessing information, providing care, making decisions and managing symptoms, new signs/symptoms sparked a change in parents’ emotions, coping and behaviour. Parents routinely search for information about paediatric fever and value reliable, accessible resources. Conclusions Our findings highlight parents’ strengths assessing fever and effectively managing symptoms. We are encouraged by the potential for these results to inform the development of empowering resources to help parents make child health decisions during paediatric fever. Relevance to clinical practice Findings provide an evidence base for researchers, clinicians and policymakers to improve care for paediatric patients and families. Parents want clear, reliable and accessible information about decision points associated with paediatric fever. Resources with an empowerment focus may help parents maintain a sense of control when caring for a febrile child.

Person-centred care (PCC) is recognized as best practice in long-term care (LTC). Using a cross-sectional design, we examined the relationship between supportive supervisory practices and health care aides' (HCAs) self-determination on HCAs' perceived ability to provide PCC. A total of 131 HCAs from four LTC facilities participated in the study. There were strong, positive associations between HCAs' self-determination and their perceived ability to provide PCC, r = .59, p < .0001, and how supportive their supervisors were, r = .50, p < .0001. Mediation analysis using structural equation modeling found the direct effect of self-determination on PCC was 73% of its total effect on PCC; its indirect effect mediated through supervisory support was 27% of its total effect on PCC. Improving supportive supervisory relationships that encourage and enable HCAs' self-determination in LTC settings may be an important and effective means by which to increase the provision of PCC.

Introduction: Pediatric chronic pain affects 15%-39% of children. Chronic pain can have significant negative effects on a child's physical functioning, psychological and cognitive functioning, quality of life, and social functioning. Parents of children with chronic pain have reported being affected by their child's condition. There have been few studies exploring the experiences of parents of children with chronic pain through a qualitative descriptive lens. Methods: Thirteen parents from a pediatric chronic pain clinic participated in semistructured interviews. Concurrent data collection and analysis occurred to allow for follow-up of ideas that emerged during analysis. Three phases of analysis occurred: coding, categorizing, and developing themes. Results: Three themes were developed: (1) Parents' emotional journey; (2) chronic pain affects the entire family; and (3) social support is critical. Parents described emotions caused by the arduous process of obtaining a chronic pain diagnosis, followed by difficulties finding strategies to help their child manage the pain. Family life was affected because special accommodations often had to be made. Families were affected financially, incurring costs due to time off of work or additional therapies. Finally, parents stressed the importance of a strong social support network to provide assistance and flexibility for the changing needs of their child. Discussion: This research identified a better understanding of the impact of pediatric chronic pain on parents. These findings can be used to provide and promote more effective treatments and education to improve the psychological, physical, and social well-being of children with pediatric chronic pain and their families.

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