It's difficult to say no: Development of a parenting booklet about physical activity restrictions and recommendations in pediatric hemophilia.

Physical activity restrictions can be particularly difficult for children with hemophilia and their parents, as most children want to engage in the same activities as their friends or siblings. This study aimed to assess parents' need for a booklet on how to manage physical activity restrictions based on the self-determination theory and gather their suggestions for the booklet's improvement in a focus group. Data were analyzed using thematic analyses to highlight to what extent the needs of parents were met by the booklet, as well as their suggestions for improvement. A discussion on the methodology of the booklet's creation is also presented.

Illness perceptions and their relation to physical activity in children and adolescents with hemophilia.

Background: Hemophilia is a rare bleeding disorder in which illness perceptions have seldom been studied. Illness perceptions are important in predicting patients' behavior. Due to the risk of bleeding and joint damage, healthcare professionals often discourage some physical activities. Those restrictions can be difficult to follow for pediatric patients. This study investigates the relationship between illness perceptions, physical activity behavior, and intentions amongst this population. Methods: Twenty-four 6-18-year-old patients with severe hemophilia completed the Brief Illness Perception Questionnaire. A questionnaire assessing their level of physical activity and intentions toward safe and higher-risk physical activity was also administered. Clinical and socio-demographic data were collected. Associations were studied using hierarchical clustering of physical activity patterns, and Mann-Whitney U comparisons between clusters. Results: Perceptions ranged from slightly to moderately threatening, and 20-30% of participants had highly threatening perceptions on Consequences, Identity, Concern, and Emotional response. The subgroup who engaged in more high-risk physical activity and had stronger intentions to engage in this type of activity also held more concerns and perceived more symptoms. Conclusion: Patients at risk of non-adherence to recommendations concerning physical activity have more threatening illness beliefs that could be addressed during specific interventions or routine appointments. Addressing illness beliefs could be an element to behavior change. Strong emotional responses to hemophilia also stresses the need for psychosocial support strategies.

Usability Testing of an Interactive Communication Tool to Help Children Express Their Cancer Symptoms.

OBJECTIVE: Sisom is an interactive computer software program that allows children to rate the severity of their cancer symptoms. The study objectives were to describe the usability of Sisom in terms of ease of use, usefulness, and aesthetics and to offer suggestions for improvement. METHOD: A multisite, descriptive study was conducted to describe the usability of Sisom. A purposive sample of children, ages 6 to 12 years, being treated for cancer was recruited. English- and French-speaking children completed the eight tasks in Sisom recorded using Morae software and provided input via an audiotaped interview. Data were downloaded, transcribed verbatim, and analyzed descriptively. RESULTS: Thirty-four children with varying cancers participated. The majority of children liked Sisom and found Sisom easy to use, found it to be helpful in expressing their symptoms, and were satisfied with the aesthetics. Some children provided suggestions for improvement to optimize Sisom use in Canada. CONCLUSIONS: Children's positive responses and desire to use Sisom again suggest that future research should be directed toward implementing and evaluating its effectiveness in a variety of settings.

Understanding adherence to treatment and physical activity in children with hemophilia: The role of psychosocial factors.

The objective of this study was to identify psychosocial factors to explain intentions of children and adolescents with hemophilia to adhere to recommendations for self-care. Twenty-four patients with hemophilia A and B, aged 6-18 years old, and their parents, completed a survey. Measures assessed factors from the theory of planned behavior, physical activity, and medical treatment adherence. The results indicate that past behaviors, attitudes, and subjective norms explained a large proportion of the intention to engage in future nonrecommended physical activity. This study supports the need to investigate motivational factors underlying behaviors in larger scale studies and identifies targets for future interventions.

Linguistic Validation of an Interactive Communication Tool to Help French-Speaking Children Express Their Cancer Symptoms.

Sisom is an interactive tool designed to help children communicate their cancer symptoms. Important design issues relevant to other cancer populations remain unexplored. This single-site, descriptive, qualitative study was conducted to linguistically validate Sisom with a group of French-speaking children with cancer, their parents, and health care professionals. The linguistic validation process included 6 steps: (1) forward translation, (2) backward translation, (3) patient testing, (4) production of a Sisom French version, (5) patient testing this version, and (6) production of the final Sisom French prototype. Five health care professionals and 10 children and their parents participated in the study. Health care professionals oversaw the translation process providing clinically meaningful suggestions. Two rounds of patient testing, which included parental participation, resulted in the following themes: (1) comprehension, (2) suggestions for improving the translations, (3) usability, (4) parental engagement, and (5) overall impression. Overall, Sisom was well received by participants who were forthcoming with input and suggestions for improving the French translations. Our proposed methodology may be replicated for the linguistic validation of other e-health tools.

Motivational techniques to improve self-care in hemophilia: the need to support autonomy in children.

BACKGROUND: In pediatric hemophilia, caregivers are facing unique challenges to adherence and self-care in children and adolescents with hemophilia. Hemophilia treatment requires adequate prophylaxis and on-demand treatment, as well as a clear behavioral strategy to limit risk-taking in terms of physical exercise and diet. Medication adherence rates of hemophilia patients have been reported to decrease during late childhood and adolescence. In the developing child, moving safely from parent-care to self-care is one of the greatest challenges of integrative care within this domain. There is a clear need for initiatives designed to increase an individual's motivation for treatment and self-care activities. DISCUSSION: Among motivational approaches, the self-determination perspective offers a useful framework to explain how the transition to self-care can be facilitated. We discuss how motivation regarding hemophilia treatment may be increased through parental autonomy support and we offer examples of applied communication techniques to facilitate autonomy-supportive caregiving. Although it has not yet been tested in the context of hemophilia, these communication techniques could potentially help caregivers promote adherence and self-care in children. Confronted by unique challenges to adherence and self-care, caregivers of children with hemophilia should move from an exclusive focus on illness-management education to an integrative strategy, including motivation-enhancing communication. The self-determination perspective provides important proximal objectives (e.g. autonomy support) to maintain optimal adherence in adolescents as they move from parent-care to self-care. Future research initiatives should address the practice of these communication techniques and evaluate them in the context of hemophilia.

Enhancing Cognitive Function Using Perceptual-Cognitive Training.

Three-dimensional multiple object tracking (3D-MOT) is a perceptual-cognitive training system based on a 3D virtual environment. This is the first study to examine the effects of 3D-MOT training on attention, working memory, and visual information processing speed as well as using functional brain imaging on a normative population. Twenty university-aged students were recruited and divided into a training (NT) and nonactive control (CON) group. Cognitive functions were assessed using neuropsychological tests, and correlates of brain functions were assessed using quantitative electroencephalography (qEEG). Results indicate that 10 sessions of 3D-MOT training can enhance attention, visual information processing speed, and working memory, and also leads to quantifiable changes in resting-state neuroelectric brain function.