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.
Objectives Parents of children with cystic fibrosis (CF) are at risk of depression and anxiety symptoms, yet, they are an under-researched group. This national cross-sectional study investigated the prevalence of anxiety and depression in parents of children with CF, and examined the associations between these symptoms and their child's physical health and quality of life. Methods A total of 203 parents of children attending nine paediatric CF clinics across Ireland filled out a questionnaire pack containing: a background information questionnaire; the Hospital Anxiety and Depression Scale (HADS); the Centre for Epidemiological Studies Depression Scale (CES-D); and, the Cystic Fibrosis Quality of Life Scale-Revised Edition (CFQ-R). Results According to the HADS, 38% of parents had elevated anxiety and 12% had elevated depression symptoms. Just over a fifth (20.7%) had elevated depression symptoms on the CES-D. Mothers had significantly higher levels of anxiety than fathers. There were statistically significant negative linear correlations between parents' HADS anxiety and depression scores and their child's pulmonary function, and between parents' HADS anxiety and depression scores and their child's quality of life. Conclusions These results indicate that parents are at risk of depression and anxiety symptoms, and that these are associated with the physical health and quality of life of their child with CF. The findings support the need for parents to have mental health screening annually in CF services, as recommended in international guidelines. There is also a need to integrate a family-centred approach into CF services with appropriate supports and mental health referral pathways for parents.
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.
ObjectiveTo compare online and paper-based screening for depression and anxiety in adults with cystic fibrosis (CF).Design and settingCross-sectional study in CF clinics in Ireland and through the Cystic Fibrosis Ireland online community.Participants160 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.MeasuresDepression 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.ResultsCompared 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.ConclusionsOur 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.
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.
Background Adverse job characteristics have been linked with increased incidence of depression and anxiety in working populations. However, the association between job characteristics and mental health, in an older working population while controlling for personality traits, is less well known.Aims To examine the association between job characteristics (job demands and job control) and mental health (depression and anxiety) for older workers while controlling for personality traits.Methods A sample of workers aged 50-69 years were recruited from a primary health care clinic in Southern Ireland. Job characteristics were measured using the Copenhagen Psychosocial Questionnaire; demands (quantitative and cognitive) and control (influence at work and possibilities for development). Personality traits were measured using the Ten-Item Personality Inventory, depression was measured using the Center for Epidemiological Studies-Depression Scale and anxiety was measured using the Hospital Anxiety and Depression Scale. Descriptive analysis, simple and multiple linear regression analyses were conducted.Results The final sample size was 1025 with an initial 67% response rate. Multiple linear regression analysis showed job characteristics (in particular, job demands) to be significant positive predictors of symptoms of depression and anxiety. The inverse was true for job control variables and symptoms of depression. Neither possibilities for development nor influence at work were associated with symptoms of anxiety.Conclusions Our findings indicate that despite potential confounders, higher demands at work can impact the worker's mental health negatively. Reducing job demands and encouraging role development may benefit the mental health of older workers.
Introduction: Evidence from the international literature is that the prevention and management of chronic diseases through integrated care should be primary care GP led supported by primary care specialists and secondary care specialist services. Primary care led services towards integrated care marks a transformational shift away from hospital centric services, which has traditionally dominated healthcare in many countries. The shift towards integrated primary care led services is now a strategic priority at Government level across European countries and elsewhere in effort to tackle the growing burden of chronic disease (Nolte & Knai). The emphasis on integrated care is to avoid fragmentation of services between primary and secondary care and to ensure the delivery of “the right service, at the right time, in the right place by the right team”. The aims of this paper is to systematically present the evidence on: (i) what works best towards an integrated approach to chronic illness management between primary and secondary specialist services; (ii) the effectiveness of best models of integrated care programmes; and (iii) how best to implement an integrated care programme into a national healthcare service (such as Ireland) drawing on international best practices. Methods: This desk based research was guided by the principles of conducting systematic reviews (Higgins & Green 2011; Centre for Systematic Reviews & Dissemination 2008). Inclusion criteria for papers were by population (adults) with chronic disease (respiratory, diabetes, musculoskeletal, cardiovascular); focus on integration (across healthcare boundaries); publication type (meta-review, meta-analysis, meta-synthesis, RCT, or evaluation study); all limited to a publication within 10 year period from 2005. Databases searched were MEDLINE, CINAHL, Cochrane Library and Grey Literature. From a total of 6,466 records screened 24 studies in 33 papers were included for review. For the quality appraisal process, studies were stratified and grouped according to study type. For RCTs, internal validity was assessed using the Cochrane Collaboration’s Tool for Assessing Risk of Bias, and external validity was assessed using the criteria adapted from Foy et al. (2010). For the quality appraisal of synthesis papers, the AMSTAR (Assessment of Multiple Systematic Reviews) was used. Results: This findings indicate that a primary care GP led approach to integrated care for chronic illness management works best. The critical components of integrated care were found to be (i) nurse/led specialist care in primary care with a link into secondary care with a role in scheduled patient care, self-management support, risk stratification, speciality support for primary care teams, and care co-ordination across services (ii) ) shared or centralised information systems between primary and secondary care services e.g. medical records, tracking and recall systems, disease registers; (iii) shared clinical decision support tools such as clinical guidelines. These components were found to be effective in promoting positive outcomes at clinical, process and service healthcare levels. Transforming chronic illness management through an integrated care programme into a national health service was found to need a phased and bottom up approach, starting with pilot sites and working towards larger scale implementation and evaluation. Discussion: The evidence from this review supports recommendations for primary care services and clinical care delivery. There needs to be a shift from ‘individual patient’ care to a population based philosophy and approach to chronic disease management with an added emphasis on primary prevention for health and wellbeing. Identification of high-risk population groups using risk stratification techniques followed with implementation of targeted interventions are needed. There needs to be an increase in the number of specialist nurses working across clusters of primary care practices in countries such as Ireland where hospital centric healthcare system dominates. Lessons can be learned from other countries currently operationalizing strategies for chronic disease management through integrated care approaches (Nolte & Knai 2015). Conclusion: A well-designed integrated approach to chronic disease prevention and management can lead to positive clinical, process and service utilization outcomes. The review is limited by inclusion of studies of mixed quality and reliance of papers only. Primary authors or leads on integrated care in various countries were not contacted for additional insights. However, the pattern of evidence was consistent across the range of studies offering some practical solutions at clinical, professional, organisational and systems level for implementing an integrated approach to chronic illness management. The evidence provides a basis for further research such as the development of a pilot phase study for implementing one or more of the critical components of integrated care with a longer term goal for up scaling this research to wider implementation and evaluation.
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.
This chapter starts by providing an overview of the epidemiology of heroin use in Ireland and comments on how heroin use trends in Ireland compare with those in other European countries. The focus then turns to the identification of gaps in knowledge, as well as sources of epidemiological complexity, within the existing epidemiological data base on heroin use it) Ireland. The stark absence of qualitative or ethnographic work investigating the complex dynamics surrounding initiation practices is particularly noteworthy. It is argued that future research needs to expand its focus to include the exploration of contextual factors - at both the macro and micro levels - that influence youths' initiation to heroin. This, it is suggested, can be achieved using an ethno-epidemiological approach. The final sections of the chapter Outline the key methodological and operational components of an ongoing modest sized ethno-epidemiology of heroin initiation in Ireland and concludes by commenting on the methodological and theoretical merits of this approach to the study of heroin (and other drug) use, both in Ireland and elsewhere.