Search

Children and adolescents with Inflammatory Bowel Disease (IBD) face significant and unique challenges related to their condition. The aim of this study was to better understand some of these challenges, and to explore how Canadian youth respond to them. We interviewed 25 pediatric patients with IBD, ranging in age from 10–17, to find out about their illness experiences. Using a thematic analysis, we discerned three themes: challenges related to diagnosis, making sense of change, and navigating sociability. Taken together, they paint a picture of young people facing great uncertainty prior to diagnosis, pronounced changes to selfhood as they make lifestyle adjustments, and facing difficulties with the implications of reduced sociability because of their disease. We conclude by providing recommendations for the development of resources aimed at helping newly diagnosed pediatric patients navigate these issues. [ABSTRACT FROM AUTHOR]

Vaginal cleansing products such as douches, sprays, wipes, powders, washes, and deodorants are part of a growing $2 billion industry in North America. Part of the appeal of these products is supposedly attaining vaginal cleanliness, which is marketed in association with product use. Although these products are promoted as healthy, medical research indicates potential health risks for some of these products (e.g. yeast infections, bacterial vaginosis, and disruption of the vaginal microbiota). Despite these risks, many women use these products. In this paper, we draw on interviews with women who use vaginal cleansing products to examine the ways in which particular portrayals of the vagina are connected with broader societal messages about female genitalia and with motivations to use vaginal cleansing practices. These portrayals include the healthy vagina, the clean vagina, and the dirty vagina. We show that although participants in our study valued both a clean vagina and a healthy vagina, when tension occurred between these two portrayals, participants prioritized vaginal cleanliness over vaginal health. We argue that this prioritization of the idealized clean vagina is connected to societal pressures of needing to attain unrealistic standards of vaginal cleanliness. [ABSTRACT FROM AUTHOR]

Purpose: A growing body of scientific evidence supports the role of food and diet in the pathogenesis and management of inflammatory bowel diseases (IBD). However, little is known about the role of food and diet from the perspectives of pediatric patients and their parents. This study aimed to explore how children and adolescents with IBD and their parents coped with the illness through food and diet in their daily lives. Methods: We conducted semi-structured interviews with 28 children and adolescents with IBD, 26 parents and one grandparent. Results: Two major themes, dietary strategies and family food practices, were identified through thematic analysis. There were three types of dietary strategies: food avoidance and moderation; following a specific diet; and healthy eating. For family food practices, two subthemes were identified: impact on grocery shopping, meal planning, and cooking; and maintaining routine and normality. Conclusions: Our findings have important implications for the clinical care of pediatric IBD. Notably, IBD not only influenced the food practices of the pediatric patients, but also their parents and other family members. Healthcare professionals should consider the family unit when giving nutritional advice or developing nutritional guidelines. Personalized nutritional counselling and ongoing nutritional assessment are also warranted. [ABSTRACT FROM AUTHOR]

Background: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. Methods: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. Results: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. Conclusions: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process. [ABSTRACT FROM AUTHOR]

Rationale Asthma is a common respiratory condition with high prevalence rates globally. While there are effective treatments, asthma remains an important health concern as people continue to die from severe attacks. Improving the experiences of, and health outcomes for, people with asthma depends heavily on their interactions with healthcare professionals. Understanding negative clinical encounters will benefit people with asthma and healthcare providers. Objective To examine epistemic tensions in negative clinical encounters from a patient perspective, with an aim to better understand how patients respond to these tensions. Much of the scholarship on patient interactions with healthcare providers examines interpersonal or structural factors. Thus, focusing our analysis on tensions between lay and expert knowledge in negative clinical encounters provides a novel contribution to this body of scholarship. Method As part of a larger qualitative study ( n  = 70) examining the lived experiences of people who have asthma or a child with asthma, semi-structured interviews with 17 participants who described having negative clinical encounters were analyzed for themes. Results Participants responded to epistemic tensions in two main ways: (1) by incorporating expert knowledge; and (2) by resisting/challenging expert knowledge. In both cases, participants also described feeling frustrated and uncertain about their or their child's clinical care. We analyze these responses by drawing on Lindström and Karlsson's (2016) conceptualization of epistemic tensions as arising from 3 characteristics of epistemic asymmetry: access, rights, and responsibility. Conclusion Based on this study, (1) a patient's confidence in claiming epistemic access and asserting epistemic rights when epistemic tensions arise are related to the context and their own history of living with asthma; and (2), epistemic tensions can make visible the power relations in the patient-clinician relationship, which can lead to the exertion of biomedical authority, or the taking up of patient's lay knowledge. [ABSTRACT FROM AUTHOR]

Rationale Traditional perspectives on informed consent assume that when faced with decisions about whether to participate in research, individuals behave according to principles of classical rationality, taking into account all available information to weigh risks and benefits to come to a decision that is optimal for them. However, theoretical and empirical research in psychology suggests that people may not make decisions in this way. Less is known about decision-making processes as they pertain to participating in biomedical research, particularly when the participants are children. Objective We sought to better understand research decision processes especially in children who tend to participate extensively in research due to chronic illness. Methods To learn more about children’s decision-making in this context, we interviewed 19 young patients with cystic fibrosis (male n = 7; female n = 12) aged 8–18 years ( M = 13 years) at a children’s hospital in Canada between April and August 2013. Results We found that participants generally had a default approach to participation decisions, which they attributed to their parents’ attitudes to research, experiences of having grown up participating in research, trusting the researchers, and wanting to help. Most of our participants made the decision to participate in research based on a heuristic with a baseline to say “yes”, subject to change based on aspects of the research or particular preferences. In particular, concerns with the procedure, unwillingness to talk about cystic fibrosis, logistical challenges, and perceptions of risk all influenced the decision, as did the perceived importance or personal relevance of the research. Conclusion Our study illustrates that rather than conducting risk/benefit analyses, participants tended to adopt a heuristic-like approach, consistent with decision theories that view heuristic decision-making as ecologically rational. [ABSTRACT FROM AUTHOR]

Rationale Living with a chronic illness poses many challenges, especially during the adolescent stage of development. Few studies have explored young people’s experiences of talking about their illness and how they go about deciding if and when they should tell others about their condition. Objective Our study sought the perspectives of Canadian children and adolescents living with inflammatory bowel disease (IBD) to determine how they go about deciding if and when to tell others about their illness. Methods Twenty-five participants with IBD, ranging in age from 10 to 17 years old, were interviewed about their experiences. Results Our participants highlighted that they generally preferred to conceal their illness. However, when they did disclose, they drew on a diverse range of contextual factors such as their knowledge of the illness as well as the severity of their illness, to make the decision. They also highlighted that one of the main challenges they experience is dealing with negative reactions to the news of their illness. This paper presents a decision-making model describing how children decide whether to disclose or conceal their IBD. Conclusion Our study illustrates that for children and adolescents, managing others’ knowledge about their illness has important implications for illness identity management. We argue that knowledge of how children with IBD make disclosure decisions is an important part of understanding the social experience of having IBD, and in creating environments that allow them to adapt to life with IBD. Our study clearly highlights the need for specific programs to be implemented to normalize IBD and to create supportive environments for children and adolescents diagnosed with IBD. [ABSTRACT FROM AUTHOR]