Patient-oriented research (POR) has received increasing attention in recent years. In this approach, patients' experiential knowledge, derived from their experiences of living with a condition or illness and of interacting with the healthcare system, is recognized, valued, and seen as complementary to scientific knowledge. Early career researchers (ECRs) are the next generation of researchers, but little is known about how they perceive POR. In this study, ECRs were invited to reflect on what POR is, how patients can best contribute to research, and ECRs' own role in developing POR. Using a technique designed to collect expert opinions and find consensus-the Delphi method-a panel of 16 ECRs responded, in three rounds, to three questionnaires, with the second and third being built on responses to the preceding ones. Based on their understanding, the panelists agreed that the most important element in defining POR would be valuing, mobilizing, and legitimizing the experiential knowledge of patients who live with a particular health condition. Panelists considered patients to be integral members of the research team, but were less convinced that they should be considered co-researchers. The panelists saw themselves as taking part in developing POR by sharing information, teaching, and encouraging POR among their peers, as well as by participating actively in organizations interested in POR. This is the first study to examine the perspectives of ECRs, who, along with many others, have an important role in supporting the ongoing development of POR so that it becomes more widely adopted.
Background : Developmental coordination disorder (DCD) is a prevalent neurodevelopmental disorder. Best practices include raising parents' awareness and building capacity but few interventions incorporating these best practices are documented. Objective : To examine whether an evidence-based online module can increase the perceived knowledge and skills of parents of children with DCD, and lead to behavioural changes when managing their child's health condition. Methods : A mixed-methods, before-after-follow-up design guided by the theory of planned behaviour was employed. Data about the knowledge, skills and behaviours of parents of children with DCD were collected using questionnaires prior to completing the module, immediately after, and three months later. One-way repeated measures ANOVAs and thematic analyses were performed on data as appropriate. Results : Fifty-eight participants completed all questionnaires. There was a significant effect of time on self-reported knowledge [F(2.00,114.00)=16.37, p=0.00] and skills [F(1.81,103.03)=51.37, p=0.00] with higher post-and follow-up scores than pre-intervention scores. Thirty-seven (65%) participants reported an intention to change behaviour post-intervention; 29 (50%) participants had tried recommended strategies at follow-up. Three themes emerged to describe parents' behavioural change: sharing information, trialing strategies and changing attitudes. Factors influencing parents' ability to implement these behavioural changes included clear recommendations, time, and 'right' attitude. Perceived outcomes associated with the parental behavioural changes involved improvement in well-being for the children at school, at home, and for the family as a whole. Conclusions : The online module increased parents' self-reported knowledge and skills in DCD management. Future research should explore its impacts on children's outcomes long-term. Enclosed please find the research article entitled "Using an evidence-based online module to improve parents' ability to support their child with Developmental Coordination Disorder"-for consideration by Disability and Health Journal. The article consists of a mixed-method, before-after trial with a threemonth follow-up. In this trial, parents of children with Developmental Coordination Disorder (DCD) completed an online evidence-based module providing information and strategies to manage this prevalent and potentially disabling chronic health condition. This manuscript will be of interest to your journal as the families of children with motor delays, or "suspected DCD", typically visit physicians and many other health care professionals to find out "what is wrong with their child". Previous papers have suggested that providing evidence-based information to families is a key strategy in equipping families to support their children with DCD. However, no specific intervention has been tested so far to evaluate the impact of providing information to families. This study evaluated whether an evidence-based online module could inc...
Objectifs : Environ 4 % des enfants ont un handicap en Amérique du Nord ou en Europe. Plusieurs pays ont développé une offre de soins afin de répondre aux besoins spécifiques de ces enfants. Or, certains auteurs soutiennent que davantage d’activités de santé publique et de promotion de la santé devraient être offertes pour favoriser leur participation sociale et organiser les services de façon efficiente. Les objectifs de l’article sont : 1) de présenter les besoins des enfants handicapés, principalement ceux avec une déficience physique, pouvant être satisfaits par des activités de santé publique, 2) de présenter l’organisation du système de santé québécois et de discuter de l’inclusion des principes de santé publique dans les services de réadaptation et, 3) de proposer des pistes d’intégration des activités de prévention-promotion. Méthodes : Les besoins des enfants handicapés sont présentés selon les catégories du Life Needs Model : les habiletés de base ; les habiletés appliquées ; les besoins de soutien, d’éducation et d’information pour les enfants, les familles et la communauté. Une analyse de l’organisation des services de réadaptation pédiatrique au Québec est effectuée. Résultats et conclusion : Les services offerts visent principalement à développer les habiletés de base et appliquées. Le mandat des établissements et les temps d’attente pourraient limiter les services visant à répondre à l’ensemble des besoins. L’intégration d’activités de prévention et de promotion de la santé permettrait d’assurer une meilleure complémentarité des services et de favoriser la participation sociale des enfants avec une déficience physique. Certaines approches qui offrent des pistes intéressantes sont discutées.
Objective: The study was designed to document the experiences of people affected by hepatitis C with respect to prevention, screening and treatment to more clearly understand the determinants of health trajectories and access to the health system.Methods: Based on an evaluative research, we conducted a thematic qualitative analysis of four focus group interviews with people affected by hepatitis C. Two interviews (n = 3) consisted of people at risk of contracting hepatitis C, the third interview (n = 6) concerned people diagnosed HCV positive but not treated and the fourth interview (n = 6) targeted people who had access to treatment (n = 6).Results: We identified the drivers, barriers and facilitating factors, trajectories of health and care of people affected by hepatitis C in two periods of life: from the injection to HCV screening and from HCV diagnosis to treatment. Life trajectories in relation to hepatitis C are the product of many influences: the personal life experience, the attitude of healthcare staff, the organization of the health system and contingent factors.Conclusion: Understanding the life experience of people affected by hepatitis C is essential to identify potential levers of change and new ways to organize the health system in order to more effectively reach these people.
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