Developing agency in the transition to self-management of cystic fibrosis in young people.

INTRODUCTION: Young people living with a chronic illness must be supported by healthcare professionals and parents to manage their care as they move through adolescence and into adulthood. The concept of agency is relevant to this process as it involves reflecting on one's behaviour and its consequences, and considering alternative possibilities, before committing to a course of action. METHODS: The aim of this study was to explore the role of agency in young people's transition to self-management of cystic fibrosis. Qualitative semi-structured interviews were carried out with 13 young people (7 female, 6 male) aged 13-22 years, recruited from three cystic fibrosis clinics in the Republic of Ireland. RESULTS: By self-monitoring their behaviour and managing their symptoms the young people described a process by which they employed agency and as a result, gained confidence and a sense of control over their illness. Although, parents and health care professionals aided in the development of agency, the young people explained that it was occasionally threatened, particularly in their interactions with health care professionals. This led the young person to react defensively, and negatively affected their relationship with health care professionals. CONCLUSIONS: For young people to feel supported empowered in the management of their illness, their developing ability to exercise agency must be respected and encouraged through collaborative decision making.

Health-Related Quality of Life in Adolescents and Adults With Cystic Fibrosis: Physical and Mental Health Predictors.

BACKGROUND: People with cystic fibrosis face substantial physical, psychological, and social challenges as they move into adolescence and adulthood, which are likely to impact on their health-related quality of life. This study sought to examine the relative importance of physical and mental health variables associated with health-related quality of life in this group. METHODS: Adults and adolescents (N = 174; ≥14 y old) from across 11 adult or pediatric cystic fibrosis clinics in the Republic of Ireland, completed a background questionnaire that contained self-reported physical health variables, pulmonary function (ie, FEV1%) and body mass index. Questionnaire packs also contained the Hospital Anxiety and Depression Scale (HADS) and the Cystic Fibrosis Questionnaire-Revised, which has been specifically designed to assess health-related quality of life in patients with cystic fibrosis. RESULTS: HADS depression and/or anxiety scores were negatively associated with 11 of the 12 Cystic Fibrosis Questionnaire-Revised domain scores. FEV1% was positively associated with 8 domains when controlling for HADS anxiety but only 4 domains when controlling for HADS depression. HADS anxiety and depression scores demonstrated larger effect sizes and explained a greater proportion of the variance than pulmonary function in 8 of the 12 Cystic Fibrosis Questionnaire-Revised domain scores. CONCLUSIONS: Mental health variables, depression and anxiety, were strongly associated with health-related quality of life in subjects with cystic fibrosis and demonstrated greater effect sizes and explained a higher proportion of the variance overall than the physical health indicators, FEV1% and body mass index, which highlighted the importance of screening for, and treating, depression and anxiety symptoms.

Positive mental health and wellbeing in adults with cystic fibrosis: A cross sectional study.

OBJECTIVE: Screening for depression and anxiety in people with cystic fibrosis (CF) is recommended but this alone can miss the opportunity to assess and promote positive mental health and wellbeing. This cross-sectional study assessed positive mental health and wellbeing, and associations with physical health and health-related quality of life (HRQoL) in adults with CF. METHODS: Adults (n = 147) with CF from 9 CF centres in the Republic of Ireland completed the Warwick Edinburgh Mental Well-being scale, the Hospital Anxiety and Depression Scale and the Cystic Fibrosis Questionnaire-Revised. Demographic and physical health outcome data were also collected. RESULTS: High levels of positive mental health and wellbeing were reported in this sample. There were significant associations between positive 'mental health and wellbeing' and pulmonary function, self-reported physical health and recent hospitalizations. Positive mental health was significantly associated with 11 of the 12 CFQ-R domains assessing HRQoL. CONCLUSION: Assessing and promoting positive mental health and wellbeing may contribute to improving or maintaining physical and mental health, and HRQoL in patients with cystic fibrosis. It provides valuable clinical information to complement depression and anxiety screening and has potential to track the effectiveness of mental health promotion strategies by assessing and monitoring positive mental health and wellbeing over time. Individuals with CF may benefit from interventions that promote positive mental health and wellbeing by enhancing coping and problem-solving skills and fostering hope and optimism. Future research should focus on the development and testing of positive mental health and wellbeing promotion interventions in people with CF.

Online versus paper-based screening for depression and anxiety in adults with cystic fibrosis in Ireland: a cross-sectional exploratory study.

OBJECTIVE: To compare online and paper-based screening for depression and anxiety in adults with cystic fibrosis (CF). DESIGN AND SETTING: Cross-sectional study in CF clinics in Ireland and through the Cystic Fibrosis Ireland online community. PARTICIPANTS: 160 adult patients aged 18 or above were recruited. Of these, 147 were included in the analysis; 83 online and 64 paper-based. The remaining 13 were excluded because of incomplete data. MEASURES: Depression and anxiety were measured using the Hospital Anxiety and Depression Scale (HADS). Data on pulmonary function (forced expiratory volume in 1 s %) and body mass index were self-reported based on clinical assessments. Sociodemographic data were collected. RESULTS: Compared with the paper-based participants, the online participants were more likely to be female (61.7% vs 48.4%), older (mean 32.2 vs 28.2 years) and were more likely to be married (32.5% vs 15.6%), living with their spouse or partner (42.5% vs 22.6%) and working either full time (33.7% vs 15.9%) or part time (30.1%vs 17.5%). The prevalence rates of elevated anxiety and depression were not significantly different (P=0.71 and P=0.56). HADS anxiety and depression scores were not statistically different between online (P=0.83) and paper-based (P=0.92) participants based on Mann-Whitney U test. A significant negative correlation was found between depression and pulmonary function (r=-0.39, P=0.01) and anxiety and pulmonary function (r=-0.36, P=0.02). Based on Cronbach's alpha, there were no statistically significant differences between the online and paper-based participants on the internal consistency of the HADS anxiety (P=0.073) and depression (P=0.378) scales. CONCLUSIONS: Our findings suggest that online and paper-based screening for depression and anxiety in adult patients with CF yield comparable findings on prevalence rates and scores, associations with health and internal consistency of subscales. This study highlights that online screening offers an alternative method to paper-based screening. Further research with a larger sample and assessment of measurement equivalence between online and paper based screening is needed to confirm our results.

The Risk Environment of Heroin Use Initiation: Young Women, Intimate Partners, and "Drug Relationships".

This paper examines young women's initiation to heroin use in the context of an intimate relationship based on data from a small-scale ethno-epidemiology of heroin use in Ireland, 2007-2009. The epidemiological sample included 120 young people, and life history interviews were conducted with a sub-sample of 40 youth aged 16-25 years. A detailed analysis of the "risk environment" of young women's heroin initiation highlights a complex interplay between women's agency and intimate partner influence. It is argued that dichotomous representations of women as victims or emancipated consumers do not adequately capture the complexity of women's initiation journeys. The study's limitations are noted and implications for drug use prevention and harm reduction strategies are discussed.