Community workers' understandings and practices of resistance

This research is focused on Community Workers located in Southern Ireland, and their understandings and practices of resistance. It is an attempt to explore the ways in which community workers’ understandings and practices of resistance are formed and, in turn, inform their sense of identity and their responses to the wider context of community development work in Ireland today. This study is specifically located but also has wider application and relevance because of the extended international reach of neo-liberal and managerial rationalities, and their implications for politics, policy and practice. The study considers resistance in a number of inter-related ways: as a collective oppositional position (with negative and positive dimensions); a personal and/or professional value (associated with the ‘expansion of contention’); a strategy for negotiating unequal power relations (in a range of levels and spaces of power); an identity (in relation to the sustaining of ‘reflexive subjectivities’); a set of practices, (which take into account the interplay between economic, political and cultural influences); and an educational process through which practitioners assess and enact personal and professional agency. Critical theorisations of community development and of the Irish state over time, trace the ways in which neo-liberalism and managerialism has inflected community development practice and the positions of community workers and communities in that process. The study draws on James C. Scott, Gramsci, Barnes and Prior, among others, which enabled the interrogation of resistance in relation to everyday practices through engaging with ‘hidden transcripts’ and spaces. The method chosen was focus group discussions with three groups of community workers located in different counties in Southern Ireland. This method facilitated a deep discourse analysis of practitioners’ encounters with resistance in the field of community work. Key findings relate to the various interpretations of the role of resistance, practices of resistance (including current restrictions), the value of resistance work and the conditions that may be conducive to practising resistance.

Becoming a father of a child with an intellectual disability- a narrative inquiry of Irish fathers’ stories

Background: This thesis explored men’s experiences of becoming a father of a child with an intellectual disability in the early years. In Ireland, it is estimated that there are almost 97% (n= 9,914) children with intellectual disabilities living at home in the care of parents, siblings, relatives or foster parents. While mothers and fathers are the primary caregivers, mothers’ experiences are well documented in comparison to the dearth of reports on fathers’ experiences. This descriptive narrative study aims to redress this gap in knowledge and understanding of men’s experiences of becoming a father of a child with an intellectual disability in the early years. Method: Narrative inquiry was employed for this study as it allows stories told by fathers to be collected as a means of exploring men’s transition to becoming a father of a child with an intellectual disability. A sample of 10 fathers of children with intellectual disabilities aged between thirteen months and five years of age were recruited from a large intellectual disability Health Service Provider (HSP) in the South of Ireland. Data were collected through semi-structured interviews which were audio-recorded, transcribed, and analysed using a narrative thematic approach. Findings: Findings are presented in four themes: i) ‘becoming a father’, ii) ‘something wrong with my child’, iii) ‘entering the world of disability’ and iv) ‘living a different life’. For all 10 fathers the time of being told that their child had an intellectual disability was laden with negative emotional responses irrespective of whether the diagnosis was at birth or more gradual over the child’s early developmental period. When fathers found out that ‘something was wrong’ they spoke of ‘moving on’ and entering the world of disability. In their narratives, becoming the father of a child with an intellectual disability had changed their lives and would inevitably change their futures. Fathers’ positivity was clearly evident with many fathers identifying that the diagnosis of their child with an intellectual disability was not a life ending event but rather a life changing event. Conclusions: Healthcare professionals have a critical role in supporting fathers during the transition to becoming a father of a child with an intellectual disability. Factors which require consideration include recognising that each father’s experience is unique; that fathers require support; and that fathers achieve personal growth because of their experiences of their transition to becoming a father of a child with an intellectual disability in the early years.

The effects of copayment policies on adherence to prescription medicines in publicly insured populations

Introduction: Copayments for prescriptions are associated with decreased adherence to medicines resulting in increased health service utilisation, morbidity and mortality. In October 2010 a 50c copayment per prescription item was introduced on the General Medical Services (GMS) scheme in Ireland, the national public health insurance programme for low-income and older people. The copayment was increased to €1.50 per prescription item in January 2013. To date, the impact of these copayments on adherence to prescription medicines on the GMS scheme has not been assessed. Given that the GMS population comprises more than 40% of the Irish population, this presents an important public health problem. The aim of this thesis was to assess the impact of two prescription copayments, 50c and €1.50, on adherence to medicines.Methods: In Chapter 2 the published literature was systematically reviewed with meta-analysis to a) develop evidence on cost-sharing for prescriptions and adherence to medicines and b) develop evidence for an alternative policy option; removal of copayments. The core research question of this thesis was addressed by a large before and after longitudinal study, with comparator group, using the national pharmacy claims database. New users of essential and less-essential medicines were included in the study with sample sizes ranging from 7,007 to 136,111 individuals in different medication groups. Segmented regression was used with generalised estimating equations to allow for correlations between repeated monthly measurements of adherence. A qualitative study involving 24 individuals was conducted to assess patient attitudes towards the 50c copayment policy. The qualitative and quantitative findings were integrated in the discussion chapter of the thesis. The vast majority of the literature on this topic area is generated in North America, therefore a test of generalisability was carried out in Chapter 5 by comparing the impact of two similar copayment interventions on adherence, one in the U.S. and one in Ireland. The method used to measure adherence in Chapters 3 and 5 was validated in Chapter 6. Results: The systematic review with meta-analysis demonstrated an 11% (95% CI 1.09 to 1.14) increased odds of non-adherence when publicly insured populations were exposed to copayments. The second systematic review found moderate but variable improvements in adherence after removal/reduction of copayments in a general population. The core paper of this thesis found that both the 50c and €1.50 copayments on the GMS scheme were associated with larger reductions in adherence to less-essential medicines than essential medicines directly after the implementation of policies. An important exception to this pattern was observed; adherence to anti-depressant medications declined by a larger extent than adherence to other essential medicines after both copayments. The cross country comparison indicated that North American evidence on cost-sharing for prescriptions is not automatically generalisable to the Irish setting. Irish patients had greater immediate decreases of -5.3% (95% CI -6.9 to -3.7) and -2.8% (95% CI -4.9 to -0.7) in adherence to anti-hypertensives and anti-hyperlipidaemic medicines, respectively, directly after the policy changes, relative to their U.S. counterparts. In the long term, however, the U.S. and Irish populations had similar behaviours. The concordance study highlighted the possibility of a measurement bias occurring for the measurement of adherence to non-steroidal anti-inflammatory drugs in Chapter 3. Conclusions: This thesis has presented two reviews of international cost-sharing policies, an assessment of the generalisability of international evidence and both qualitative and quantitative examinations of cost-sharing policies for prescription medicines on the GMS scheme in Ireland. It was found that the introduction of a 50c copayment and its subsequent increase to €1.50 on the GMS scheme had a larger impact on adherence to less-essential medicines relative to essential medicines, with the exception of anti-depressant medications. This is in line with policy objectives to reduce moral hazard and is therefore demonstrative of the value of such policies. There are however some caveats. The copayment now stands at €2.50 per prescription item. The impact of this increase in copayment has yet to be assessed which is an obvious point for future research. Careful monitoring for adverse effects in socio-economically disadvantaged groups within the GMS population is also warranted. International evidence can be applied to the Irish setting to aid in future decision making in this area, but not without placing it in the local context first. Patients accepted the introduction of the 50c charge, however did voice concerns over a rising price. The challenge for policymakers is to find the ‘optimal copayment’ – whereby moral hazard is decreased, but access to essential chronic disease medicines that provide advantages at the population level is not deterred. This evidence presented in this thesis will be utilisable for future policy-making in Ireland.

Woman-centred care

Changes over the past decade have emphasised the individual service user and their relationship with the health service. Within the maternity services this has been interpreted as woman-centred care a result of key initiatives; the Winterton Report (House of Commons, 1992. Maternity Services. Second Report of the Health Committee (Winterton Report), Vol. 1. HMSO, London) and Changing Childbirth (DoH, 1993a, Changing childbirth: reports of the expert maternity group parts 1 & 2. HMSO, London). Changing Childbirth outlined key principles of the maternity services and the need for the woman (and her partner, if she wishes) to be the focus of care. The key principles are choice, continuity and control. High quality care depends on the recognition of individuals as having unique needs which continues to be reflected within contemporary policy documents (DoH, 1997, The new NHS: modern and dependable. HMSO, London). This paper presents findings related to the provision of woman-centred care from a national research and development study. The study design incorporated (i): a national survey which was undertaken with midwives, midwife supervisors and doctors; and (ii): in-depth case studies in which information was obtained through interviews with midwives, midwife supervisors, educators, managers, doctors and mothers. Midwives, at all levels, are involved in changing maternity service provision and adapting to new systems of care which aim to increase continuity of care and carer for the woman. The researchers sought to understand how woman-centred care was interpreted and experienced in practice. The findings have been used to identify the continuing educational needs of midwives, and to develop an open learning educational package to meet identified need. The curriculum was designed to enhance the move towards the provision of a more integrated woman-centred service.

Continuing Professional Development: rhetoric and practice in the NHS

This article explores the experience of Continuing Professional Development (CPD) by supervisory-level clinical staff in the National Health Service. Four main themes are highlighted in the literature, namely the nature and experience of CPD, its relationship with human resource management practices and in particular in career development and planning. These themes are examined utilising sources of (triangulated) empirical data based on a 2500 sample survey conducted across five NHS Trusts. A key finding was that responsibility for learning and development was perceived as belonging to the individual rather than the organisation. Other findings concern a lack of resource-based commitment by the organisation to CPD for clinical staff undertaking supervisory-level roles and evidence of 'credentialism' with its emphasis on seeking certificated qualifications. The findings raise concerns about the potential for clinical staff to become disillusioned and to perceive a potential breach in their psychological contract because of problems in reconciling their own interests with those of their professional body, and that of their employer in relation to CPD.

Risk adjustment for hospital use using social security data: cross sectional small area analysis

Objectives: To identify demographic and socioeconomic determinants of need for acute hospital treatment at small area level. To establish whether there is a relation between poverty and use of inpatient services. To devise a risk adjustment formula for distributing public funds for hospital services using, as far as possible, variables that can be updated between censuses. Design: Cross sectional analysis. Spatial interactive modelling was used to quantify the proximity of the population to health service facilities. Two stage weighted least squares regression was used to model use against supply of hospital and community services and a wide range of potential needs drivers including health, socioeconomic census variables, uptake of income support and family credit, and religious denomination. Setting: Northern Ireland. Main outcome measure: Intensity of use of inpatient services. Results: After endogeneity of supply and use was taken into account, a statistical model was produced that predicted use based on five variables: income support, family credit, elderly people living alone, all ages standardised mortality ratio, and low birth weight. The main effect of the formula produced is to move resources from urban to rural areas. Conclusions: This work has produced a population risk adjustment formula for acute hospital treatment in which four of the five variables can be updated annually rather than relying on census derived data. Inclusion of the social security data makes a substantial difference to the model and to the results produced by the formula.

Effects of trauma on bipolar disorder: the mediational role of interpersonal difficulties and alcohol dependence

Objectives: This study examined: (i) the prevalence of trauma in a bipolar disorder (BD) sample, and (ii) how trauma histories mediated by interpersonal difficulties and alcohol dependence impact on the severity of BD. The prevalence of posttraumatic stress disorder (PTSD) and its relationship to outcomes in BD were also examined.

Methods: Sixty participants were recruited from a geographically well-defined mental health service in Northern Ireland. Self-reported trauma histories, PTSD, interpersonal difficulties and alcohol dependence and were examined in relation to illness severity.

Results: A high prevalence of trauma was found. Trauma predicted the frequency of hospital admissions (R-2 = 0.08), quality of life (R-2 = 0.23) and inter-episode depressive symptoms (R-2 = 0.13). Interpersonal difficulties, but not alcohol dependence, appeared to play an important role in mediating these adverse effects. While only 8% of the sample met criteria for active PTSD, this comorbid disorder was associated with BD severity.

Conclusions: This study indicates that awareness of trauma is important in understanding individual differences in bipolar presentations. The theoretical and clinical implications of evidence that trauma is related to more adverse outcomes in BD are discussed. The finding that interpersonal difficulties mediate the relationship between trauma and BD severity is novel. The need for adjunctive evidence-based treatments targeting interpersonal difficulties is considered.

Uso del arte y de la creatividad en las terapias psicosociales. Estudio y valoración de resultados de la utilización de la fotografía con pacientes con un trastorno grave y crónico

This article will reveal the experiment and the subsequent investigation work carried out with patients having chronic and severe mental illness at the Creativity and Rehabilitation Workshop of the Mental Health Service at the Health Department no. 12 of the Hospital Francisco de Borja of Gandia, Spain. The course focuses on patient training in the use of photography and image as a means of expression and as a part of psychosocial therapies to improve patients’ quality of life in front of the society. In addition, it tries to enhance the analytic capacity of the patient not only with regards to the photography aesthetically, but also personally. There are many international scientific surveys backing up the knowledge and use of Artistic and Creative Therapy in chronic patients; however, these activities are seen as pioneering actions in Spain given the current health structure, which includes few national psychiatric centers developing them continuously and being temporally monitored. This experiment demonstrates that photography significantly improves the quality of life of chronic patients and motivates them socially to communicate themselves through art, just as it helps them using creativity as a tool for social action.

Pulmonary rehabilitation and follow-on services: a Northern Ireland survey

There should be a clear pathway through pulmonary rehabilitation and follow-on services. The aim of this survey was to determine the characteristics of the different components of the patient pathway, that is, pulmonary rehabilitation programs, ongoing exercise facilities, and support networks in Northern Ireland. Questionnaires were sent to current providers of pulmonary rehabilitation, providers of ongoing exercise, and support groups in Northern Ireland. Findings relating to the current status of pulmonary rehabilitation in Northern Ireland up to January 2007 are reported. There are currently 23 pulmonary rehabilitation programs in Northern Ireland. There appears to be a pathway through the short-term pulmonary rehabilitation program (6-8 weeks). Programs met standards for structure and format, except for the frequency of supervised exercise. Not all programs have links for the provision of ongoing exercise, but a range of exercise programs are available in leisure centers in Northern Ireland that include people with respiratory disease. There are 13 support groups for patients with respiratory disease in Northern Ireland and their function is diverse. Pulmonary rehabilitation is established in Northern Ireland, although not all patients are able to access these. Facilities for ongoing exercise and support groups are less developed. Improvements could be facilitated by better communication within the patient pathway and a strategic coordinated approach.

Living with children diagnosed with Autism Spectrum Disorder: Parental and professional views

The number of children diagnosed with an autistic spectrum disorder (ASD) is rising and is now thought to be as high as 1:100. While the debate about best treatment continues, the effects of having a child diagnosed with ASD on family life remain relatively unexplored. This article, by Karola Dillenburger of Queens University Belfast, Mickey Keenan of the University of Ulster, Alvin Doherty from the Health Service Executive Western Region, Tony Byrne of Parents’ Education as Autism Therapists (PEAT) and Stephen Gallagher of the University of Ulster, sets out to adjust that balance. Drawing upon data from a comprehensive study of parental needs, these authors argue that parental and professional views do not always concur; that families make extraordinary sacrifices; that siblings are affected; and that parents are under tremendous stress. Parents argue that educational and social service supports are not efficient and that they are forced to rely largely on support from within the family or from friends. In particular, some important differences between parental and professional perceptions became apparent in relation to interventions based on Applied Behaviour Analysis (ABA). The authors of this article propose that these differences need to be taken seriously by teachers and other professionals as well as by policy-makers.

A Bayesian Network Hybrid Model for Representing Accident and Emergency Waiting Times

The paper introduces a new modeling approach that represents the waiting times in an Accident and Emergency (A&E) Department in a UK based National Health Service (NHS) hospital. The technique uses Bayesian networks to capture the heterogeneity of arriving patients by representing how patient covariates interact to influence their waiting times in the department. Such waiting times have been reviewed by the NHS as a means of investigating the efficiency of A&E departments (Emergency Rooms) and how they operate. As a result activity targets are now established based on the patient total waiting times with much emphasis on trolley waits.

The effect of patient characteristics upon uptake of the influenza vaccination: a study comparing community based older adults in two healthcare systems

Background: Uptake of influenza vaccination represents a simple marker of proactive care of older people. However, many still do not receive the vaccine. To understand this challenge better, we investigated the relationship between patient characteristics (demographic, physical and psychological health, and health service use) and vaccination uptake in a sample of community-dwelling older people in two adjacent but differently structured healthcare systems (Northern Ireland (NI) and the Republic of Ireland (RoI)). Methods: 2,033 randomly selected community-dwelling older adults (65 years and older) were interviewed in their homes. Results: Rates of uptake were 78% in NI and 72% in RoI. Uptake was greater with older age (odds ratio (OR) 1.6, 95% confidence interval (CI) = 1.3-2.1, p

Using simulation to assess cardiac first-responder schemes exhibiting stochastic and spatial complexities

A Monte-Carlo simulation-based model has been constructed to assess a public health scheme involving mobile-volunteer cardiac First-Responders. The scheme being assessed aims to improve survival of Sudden-Cardiac-Arrest (SCA) patients, through reducing the time until administration of life-saving defibrillation treatment, with volunteers being paged to respond to possible SCA incidents alongside the Emergency Medical Services. The need for a model, for example, to assess the impact of the scheme in different geographical regions, was apparent upon collection of observational trial data (given it exhibited stochastic and spatial complexities). The simulation-based model developed has been validated and then used to assess the scheme's benefits in an alternative rural region (not a part of the original trial). These illustrative results conclude that the scheme may not be the most efficient use of National Health Service resources in this geographical region, thus demonstrating the importance and usefulness of simulation modelling in aiding decision making.