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.

BACKGROUND: Chronic 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. OBJECTIVE: The 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. METHODS: A 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. RESULTS: A 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. CONCLUSIONS: Our 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.

"There is a strangeness in this disease": A qualitative study of parents' experiences caring for a child diagnosed with COVID-19.

BACKGROUND: The beginning of the COVID-19 pandemic marked a period of uncertainty as public health guidelines, diagnostic criteria, and testing protocols or procedures have continuously evolved. Despite the virus being declared a worldwide pandemic, little research has been done to understand how parents manage caring for their child diagnosed with COVID-19. We sought to understand parents' experiences and information need when caring for a child diagnosed with COVID-19. METHODS: A qualitative descriptive study with an inductive and exploratory approach was completed. Participants were recruited through social media and local public health clinics. Data collection and analysis were concurrent. Semi-structured virtual interviews were conducted with 27 participants. Thematic analysis was conducted. FINDINGS: Four major themes emerged: a) dealing with uncertainty; b) anxiety; c) social stigma and stress; d) a sense of community. CONCLUSION: Our study highlights that parent experiences were diverse and multi-faceted, and their experiences evolved and shifted over the course of the pandemic. Parents would benefit from clear and consistent evidence-based online information. Understanding the perspectives of parents caring for a child with COVID-19 is an important step in developing future resources tailored to meet their unique experiences and information needs.

The Effect of a Brief Physician-Delivered Neurobiologically Oriented, Cognitive Behavioural Therapy (Brief-CBT) Intervention on Chronic Pain Acceptance in Youth with Chronic Pain-A Randomized Controlled Trial.

At the Stollery Children's Chronic Pain Clinic, new referrals are assessed by an interdisciplinary team. The final part of the intake assessment typically involves an explanation and compassionate validation of the etiology of chronic pain and an invitation to the youth to attend the group outpatient Cognitive Behavioural Therapy (CBT) program, called Pain 101, or to individual outpatient CBT. It was hypothesized that a brief physician-delivered CBT (brief-CBT) intervention at first point of contact improves subsequent pain acceptance. Using a randomized double blinded methodology, 26 participants received a standard intake assessment and 26 the standard assessment plus the brief-CBT intervention. Measures were taken at three points: pre and post-intake assessment and after Pain 101 or individual CBT (or day 30 post-assessment for those attending neither). The primary outcome measure was the Chronic Pain Acceptance Questionnaire­Adolescent version (CPAQ-A). Comparing pre and post-intake measures, there was a significant (p = 0.002) increase in the CPAQ-A scores­four-fold more in the brief-CBT intervention group (p = 0.045). Anxiety (RCADS-T Score) was significantly reduced post-intake and significantly more reduced in the intervention group compared to the control group (p = 0.024). CPAQ-A scores were significantly increased (p < 0.001) (N = 28) and anxiety (RCADs-T) was significantly reduced by the end of Pain 101 (p < 0.003) (N = 29) as was fear of pain as measured by the Tampa Scale for Kinesiophobia (p = 0.021). A physician-delivered brief-CBT intervention significantly and meaningfully increased CPAQ-A scores and reduced anxiety in youth with chronic pain. Furthermore, CBT through Pain 101 is effective at increasing acceptance, as well as reducing anxiety and fear of movement.

What do the parents of children who have chronic pain expect from their first visit to a pediatric chronic pain clinic?

BACKGROUND: Chronic pain in childhood is increasingly recognized as a significant clinical problem. Best-practice management of pediatric chronic pain in a multidisciplinary pain clinic involves a variety of treatment modalities. It is important that parents of children treated in these settings understand the different treatment options available for their children. By involving parents more effectively, care providers may more efficiently address unmet treatment needs and improve tailoring of treatment programs aimed at increasing function, reducing pain-related disability and improving quality of life. OBJECTIVES: To explore the expectations held by parents for their first visit to a pediatric multidisciplinary pain clinic. METHODS: Fourteen parents completed a paper-based survey exploring their expectations immediately before their first visit to a multidisciplinary pediatric pain clinic in a tertiary care children's hospital. RESULTS: Responses from parents suggest a clear desire for information about the causes of their child's pain, treatment options available at the pain clinic, effective strategies to enhance children's ability to cope with pain, and the effects of pain on both body and mood. Most parents rated the various treatment options as important for their child. All parents indicated it was very important to have the pain team 'be there' for them. CONCLUSIONS: These findings indicate that parents want more information about chronic pain and treatment options. Pediatric chronic pain clinics have the ability to assist children with chronic pain and their families considerably by providing information about chronic pain and the various treatment options available to them.

Effectiveness of Hand Self-Shiatsu to Promote Sleep in Young People with Chronic Pain: a Case Series Design.

BACKGROUND: Sleep problems exist for up to 30% of young people, and increase in the case of those with chronic pain. Because exclusive pharmacological management of sleep problems for children with pain is contraindicated, the development of appropriate non-pharmacological sleep interventions is a significant, largely unmet, need. PURPOSE: This study examined whether the application of a standardized hand self-shiatsu (HSS) intervention within a population of young people with chronic pain would be associated with improved objectively and subjectively measured sleep. SETTING: The Pain Management Clinic of the Stollery Children's Hospital Hospital, a large tertiary care centre in Edmonton, Alberta and the University of Alberta. RESEARCH DESIGN: Sixteen young adults, aged 17 to 27, were recruited for a case series study. The intervention involved participants self-applying a standardized hand shiatsu protocol. Participants wore an actigraph for one week at baseline before learning the HSS technique, and then at four- and eight-week follow-up. At the same measurement points they completed validated self-report measures of their sleep quality and daytime fatigue. Each participant also completed a sleep log to supplement the actigraphy data and to collect their general impressions of the HSS experience. Data were analyzed with SPSS 23 software, using Freidman's test for analysis of variance. RESULTS: The objective data did not support the hypothesis that this standardized HSS protocol improves objectively measured sleep. However, standardized self-report measures demonstrated statistically significant improvement in perceived sleep disturbance (chi-squared test [χ2] = 8.034, p = .02), sleep-related impairment (χ2 = 7.614, p = .02), and daytime fatigue as measured by the PROMIS Fatigue SF 8-a (χ2 = 12.035, p = .002), and the Flinder's Fatigue Scale (χ2 = 11.93, p = .003). Qualitative sleep log information indicated wide-spread endorsement of HSS for the management of sleep difficulties. CONCLUSION: Contrary to objective findings, self-report data support the technique of HSS to improve sleep. Participants' comments reflected an overall high level of acceptance and appreciation for the HSS technique. Results highlight the importance of expanding the theory and practice related to sleep measurement to better integrate the qualitative domain.

How Engaged Are Family Physicians in Addressing the Social Determinants of Health? A Survey Supporting the American Academy of Family Physician's Health Equity Environmental Scan.

Purpose: Public health leaders have advocated for clinical and population-based interventions to address the social determinants of health (SDoH). The American Academy of Family Physicians has worked to support family physicians with addressing the SDoH. However, the extent that family physicians are engaged and the factors that influence this are unknown. Methods: A survey was used to identify actions family physicians had taken to address the SDoH and perceived barriers. Physician and community characteristics were linked. Ordinal logistic regression was used to identify factors associated with engagement in clinical and population-based actions, separately. Results: There were 434 (8.7%) responses. Among respondents, 81.1% were engaged in at least one clinical action, and 43.3% were engaged in at least one population-based action. Time (80.0%) and staffing (64.5%) were the most common barriers. Physician experience was associated with higher levels of clinical engagement, lower median household income was associated with higher levels of population-based engagement, and working for a federally qualified health center (FQHC) was associated with both. Conclusions: The study provides preliminary information suggesting that family physicians are engaged in addressing the SDoH through clinical and population-based actions. Newer family physicians and those working in FQHCs may be good targets for piloting clinical actions to address SDoH and family physician advocates may be more likely to come from an FQHC or in a lower socioeconomic neighborhood. The study also raises questions about the value family physicians serving disadvantaged communities place on clinical interventions to address the SDoH.

Parents' experiences with pediatric chronic pain.

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.

Introduction: La douleur chronique pédiatrique affecte de 15 % à 39 % des enfants. La douleur chronique peut avoir des effets négatifs importants sur le fonctionnement physique, psychologique et cognitif des enfants, de même que sur leur qualité de vie et leur fonctionnement social. Il a été établi que les parents des enfants souffrant de douleur chronique sont affectés par l'état de leur enfants. Il y a peu d'études portant sur le vécu des enfants souffrant de douleur chronique dans une optique descriptive analytique.Méthodes: Treize parents d'une clinique de la douleur chronique pédiatrique ont participé à des entrevues semi-structurées. La collecte et l'analyse des données ont été effectuées de manière pour permettre de donner suite aux idées ayant émergé pendant l'analyse. Trois phases d'analyse ont été effectuées : la codification, la catégorisation et le développement des thèmes.Résultats: Trois thèmes ont été développés : 1) le parcours émotionnel des parents; 2) la douleur chronique affecte la famille toute entière; et 3) le soutien social est primordial. Les parents ont décrit les émotions occasionées par le processus ardu d'obtention d'un diagnostic de douleur chronique, auquel s'ajoutent les difficultés pour trouver des stratégies permettant d'aider leurs enfants à prendre en charge leur douleur. La vie familiale était affectée étant donné que des mesures spéciales devaient souvent être prises.. Les familles étaient touchées financièrement et devaient assumer cetains coûts en raison de la perte de temps de travail ou des frais liés à des traitements aditionnels. Finalement, les parents ont fait état de l'importance d'un solide réseau de soutien social pour les aider et leur leur donner une certaine souplesse pour faire face aux besoins changeants de leur enfant.Discussion: Cette étude a permis de mieux comprendre les répercussions de la douleur chronique pédiatrique sur les parents. Ces résultats peuvent être utilisés pour offrir et promouvoir une meilleure éducation ainsi que des traitements plus efficaces pour améliorer le bien-être psychologique, physique et social des enfants souffrant de douleur chronique pédiatrique et de leurs parents.

Supporting Teens with Chronic Pain to Obtain High School Credits: Chronic Pain 35 in Alberta.

Chronic pain is a significant problem in children and teens, and adolescents with chronic pain often struggle to attend school on a regular basis. We present in this article a novel program we developed that integrates attendance at a group cognitive-behavioural chronic pain self-management program with earning high school credits. We collaborated with Alberta Education in the development of this course, Chronic Pain 35. Adolescents who choose to enroll are invited to demonstrate their scientific knowledge related to pain, understanding of and engagement with treatment homework, and demonstrate their creativity by completing a project, which demonstrates at least one concept. Integrating Chronic Pain 35 into an adolescent's academic achievements is a creative strategy that facilitates the engagement of adolescents in learning and adopting pain coping techniques. It also helps teens to advocate for themselves in the school environment and improve their parents' and teachers' understanding of adolescent chronic pain. This is one of the first successful collaborations between a pediatric health program and provincial education leaders, aimed at integrating learning and obtaining school credit for learning about and engaging in health self-management for teens. The authors hope this paper serves as an effective reference model for any future collaborating programs aimed at supporting teens with chronic pain to obtain high school credits.

Influences shaping nurses' use of distraction for children's procedural pain.

PURPOSE: This study explored pediatric nurses' choices to use distraction for managing painful procedures. DESIGN AND METHODS: Using interpretive description approaches, interviews with pediatric nurses provided descriptions of choices to manage procedural pain. RESULTS: Nurses' distress influenced distraction use to mitigate the suffering of children and themselves. Newer nurses described task mastery as influencing distraction choices. Nurses' accounts of performing painful procedures on children mirrored children's descriptions of pain from the literature. PRACTICE IMPLICATIONS: Nurses' distress and competency performing painful procedures on children influenced practice. Future qualitative studies could extend understanding of pain management choices by pediatric nurses and the impact on undermanaged pain.

Intravenous nalbuphine 50 microg x kg(-1) is ineffective for opioid-induced pruritus in pediatrics.

PURPOSE: This investigation evaluated the efficacy of nalbuphine in treating postoperative opioid-induced pruritus (Pr) in pediatric patients. METHODS: After Ethics Board approval, the dual site, tertiary care teaching centre study recruited 212 subjects, age > or = seven years, who received opioid analgesia postoperatively. A modified, self-report colour analogue scale (CAS) scored pruritus intensity (PrI). Subjects who reported PrI score > or = 5/10 were randomized to treatment with nalbuphine 50 microg x kg(-1) iv (max 5 mg) or saline placebo. A pruritus intensity difference (PrID) > or = 50% was considered a positive outcome. RESULTS: Of 260 subjects approached, 212 consented and 184 received opioids. Median age was 13 yr (range 7-19) and median weight was 51 kg (range 19.6-134.8 kg). Pruritus intensity > or = 5/10 occurred in 37 (20.1%) subjects. Intravenous morphine [patient-controlled analgesia (PCA)/continuous infusion] was associated with Pr in 68% of subjects over a wide dose range (9.4-63.2 mug.kg(-1).hr(-1)). Pruritus occurred in 36% of patients in the PCA group compared to continuous opioid infusion (27%) and epidural administration (27%). Pruritus intensity difference > or = 50% was achieved in 55.6% of nalbuphine and 57.9% of saline-treated subjects. CONCLUSION: This preliminary report suggests that nalbuphine 50 microg x kg(-1) iv is not effective in treating postoperative opioid-induced pruritus in pediatric patients. The modified CAS score and PrID warrant further investigation.

Intravenous nalbuphine 50 µg·kg(-1) is ineffective for opioid-induced pruritus in pediatrics.

PURPOSE: This investigation evaluated the efficacy of nalbuphine in treating postoperative opioid-induced pruritus (Pr) in pediatric patients. METHODS: After Ethics Board approval, the dual site, tertiary care teaching centre study recruited 212 subjects, age ≥ seven years, who received opioid analgesia postoperatively. A modified, self-report colour analogue scale (CAS) scored pruritus intensity (PrI). Subjects who reported PrI score ≥ 5/10 were randomized to treatment with nalbuphine 50 µg·kg(-1) iv (max 5 mg) or saline placebo. A pruritus intensity difference (PrID) ≥ 50% was considered a positive outcome. RESULTS: Of 260 subjects approached, 212 consented and 184 received opioids. Median age was 13 yr (range 7-19) and median weight was 51 kg (range 19.6-134.8 kg). Pruritus intensity ≥ 5/10 occurred in 37 (20.1%) subjects. Intravenous morphine [patient-controlled analgesia (PCA)/continuous infusion] was associated with Pr in 68% of subjects over a wide dose range (9.4-63.2 µg·kg(-1)·hr(-1)). Pruritis occurred in 36% of patients in the PCA group compared to continuous opioid infusion (27%) and epidural administration (27%). Pruritus intensity difference ≥ 50% was achieved in 55.6% of nalbuphine and 57.9% of saline-treated subjects. CONCLUSION: This preliminary report suggests that nalbuphine 50 µg·kg(-1) iv is not effective in treating postoperative opioidinduced pruritus in pediatric patients. The modified CAS score and PrID warrant further investigation. OBJECTIF: Évaluer l'efficacité de la nalbuphine contre le prurit (Pr) postopératoire induit par les opioïdes chez des patients pédiatriques. MéTHODE: Nous avons recruté 212 sujets de ≥ sept ans qui ont reçu une analgésie opioïde postopératoire. Une échelle analogique de couleur (EAC) modifiée pour l'auto-évaluation a mesuré les scores d'intensité du prurit (IPr). Répartis au hasard, les sujets dont les scores d'IPr étaient ≥ 5/10 ont reçu de la nalbuphine à 50 µg·kg(-1) iv (5 mg maximal) ou un placebo salin. Une différence d'intensité de prurit (DIPr) ≥50% était considérée positive. RéSULTATS: Des 260 sujets rencontrés, 212 ont participé à l'étude et 184 ont reçu des opioïdes. L'âge moyen a été de 13 ans (7-19) et le poids moyen de 51 kg (19,6-134,8 kg). Un prurit ≥ 5/10 a été noté chez 37 (20,1 %) des sujets. De la morphine intraveineuse [en analgésie auto-contrôlée (AAC) ou en perfusion continue] a été associée à du Pr chez 68 % des sujets pour un grand éventail de doses (9,4-63,2 µg·kg(-1)·h(-1)). Le prurit s'est manifesté chez 36 % des patients avec l'AAC comparée à la perfusion d'opioïde continue (27 %) et à l'administration péridurale (27 %). Une différence d'intensité du prurit ≥ 50 % a été atteinte chez 55,6 % des sujets qui recevaient la nalbuphine et 57,9 % de ceux qui avaient le placebo. CONCLUSION: La nalbuphine iv à 50 µg·kg(-1) n'est pas efficace pour traiter le prurit postopératoire induit par les opioïdes chez des patients pédiatriques. Le score modifié à l'EAC et la DIPr devront être étudiés plus à fond.