Gender differences in treatment adherence among youth with cystic fibrosis: Development of a new questionnaire

AbstractBackgroundSome prior studies have reported that girls with cystic fibrosis (CF) experience higher morbidity and mortality compared to boys. In this study, the authors compared boys' and girls' perceptions of disease-related strains and resources associated with living with CF, and the relationship of these factors to CF treatment feelings and behaviors.MethodsAll 10–21 year olds with CF at the Minnesota Cystic Fibrosis Center were invited by mail to complete a new self-report survey (Living with CF Questionnaire — LCFQ). Of these 177 youth, 58% (49 boys and 54 girls) returned surveys.ResultsExploratory and confirmatory factor analyses revealed nine factors in the LCFQ. Partial support was found for hypothesized gender differences in these factors. Compared to boys, girls reported significantly more illness-related strains and worries, including emotional strains, greater treatment discouragement, lower self-esteem, and lower adherence to some aspects of the CF treatment regimen (coughing, eating high-fat foods, taking meds/pills).ConclusionsLiving with CF appears to have a greater emotional impact on adolescent girls compared to boys. These gender differences may contribute to the poorer pulmonary function observed among girls with cystic fibrosis during the adolescent years

Parental involvement and family-centered care in the diagnostic and treatment phases of childhood cancer: Results from a qualitative study

Few research studies have addressed the ways parents participate in their childs medical care, particularly in relation to the cancer experience. The purpose of this study was to explore parents descriptions of their participation in medical care for their children with cancer. For this study, seven focus groups were conducted with 45 parents of 26 children who had completed cancer treatment at least one year prior, and who were still alive. Data were coded using thematic analysis procedures. It was found that parents emphasized their role as advocates during the diagnosis and treatment phases, by informing themselves about their childrens medical conditions, making medical care decisions, limiting the actions of medical professionals, and affirming and supporting medical professionals. These results emphasize the need to employ a family-centered approach in cancer care medical settings, by fostering and supporting the active inclusion of parents in their child\u27s treatment and management

The impact of childhood cancer on the family: A qualitative analysis of strains, resources, and coping behaviors

Clinical research has led to tremendous improvements in treatment efficacy for most childhood cancers; overall 5-year survival is now greater than 75%. Long-term consequences of cure (i.e. adverse medical and psychosocial effects) have only recently begun to emerge as a primary focus of clinical research, including studies of health-related quality of life among survivors. Usually lacking in such efforts, however, is consideration of the impact of the cancer experience on the family, and the influence that the family\u27s response to cancer has on quality of life in the child. From this qualitative analysis of seven focus groups with 45 parents of children a year or more out of cancer treatment, we report those aspects of a child\u27s cancer diagnosis, treatment, and recovery that parents perceived as particularly difficult for their family, and the resources and coping behaviors parents perceived as helpful to their family in dealing with and managing the cancer experience. Using the Family Adjustment and Adaptation Response theoretical model to organize the data, the domains of strains and resources were delineated into themes and sub-themes related to the cancer, child, family, health-care system, and community. Within a third domain, coping, sub-themes were identified within the themes of appraisal-focused, problem-focused, and emotion-focused coping behaviors. Integration of this information should serve to improve future studies of health-related quality of life among children who survive cancer. Copyright © 2003 John Wiley & Sons, Ltd

Making Tactful Objects for Sensitive Settings: A Research through Design Process

This contribution illustrates the Research through Design process of Mr.V the Spaceman, a tactful object meant to support families of children with cancer maintain a healthy domestic life during stressful times. By recounting insights from the field and unfolding changes to the original artifact over a period of two years, the paper illuminates how an understanding of tactfulness has emerged and developed into a key design quality for this work. This complex and entangled process of making is surfaced and illustrated by a rich and scrupulous annotation of the artisanal craft and technological explorations that led from the original Mr.V prototype to what is now Mr.V the Spaceman.Green Open Access added to TU Delft Institutional Repository ‘You share, we take care!’ – Taverne project https://www.openaccess.nl/en/you-share-we-take-care Otherwise as indicated in the copyright section: the publisher is the copyright holder of this work and the author uses the Dutch legislation to make this work public.Human Information Communication DesignEmerging Material