The Barretstown experience

The thesis was prompted by a simple clinical observation. Seriously ill children returning from Barretstown Holiday Camp appeared changed. Barretstown ‘magic’ confuses the issue but indicates real and clinically evident transformations. The project sought to understand the experience and place it in a recognisable framework. The data was collected by interviews, observations as camp Paediatrician, memberships of the Child Advisory Committee and the Association’s criteria assessment team, participation in volunteer training and visits to international camps. The research presents evidence that the concepts of rite of passage, graceful mimesis and salutogenesis clarify operative social processes. The passage stages of separation, transition and reaggregation can be identified. Passage rites reorder personal and social upsets to fresh arrangements that facilitate change. Interviews confirm the reordering impact of achievements in play activities. These are challenging experiences closely guided by their Masters of Ceremonies – the Caras. The Cara/camper relationship is crucial and compatible with Girard’s theory of external mimesis. Visits to four camps confirm an inspirational process in contrast to a reported camp with a predetermined formative influence. Charismatic Caras/Councillors inspire playful mimesis and salutogenic transformations. Health is more than correction of pathogenic deficits and restoration of homeostasis. Salutogenic health promotes heterostasis – a desire for optimal experiences underpinned by a sense of coherence and adequate resources. Some evidence is presented that children have an improved sense of coherence after camp, which enables them to cope better with the demands of ill health. The camps enable sick children to up regulate risk taking towards more heterostatic experiences rather than down regulate their expectations. The heterostatic impulse can explain the disability paradox of good quality of life in the presence of severe disability. The salutogenic power of Barretstown can trump the pathogenic effects of childhood cancer and other serious illnesses.

Issues in the prescribing of psychotropic and psychoactive medication for persons with learning disability: quantitative and qualitative perspectives

The administration of psychotropic and psychoactive medication for persons with learning disability and accompanying mental illness and/or challenging behaviour has undergone much critical review over the past two decades. Assessment and diagnosis of mental illness in this population continues to be psychopharmacological treatment include polypharmacy, irrational prescription procedures and frequent over-prescription. It is clear that all forms of treatment including non-pharmacological interventions need to be driven by accurate and appropriate diagnoses. Where a psychiatric diagnosis has been identified, it greatly aides the selection of appropriate medication, although a specific medication for each diagnosis, as was once hoped, is simply no longer a reality in practice. Part one of the present thesis seeks to address many of the current issues in mental health problems and pharmacological treatment to date. The author undertook a drug prevalence study within both residential and community facilities for persons with learning disability within the Mid-West region of Ireland in order to ascertain the current level of prescribing of psychotropic and psychoactive medications for this population. While many attempts have been made to account for the variation in prescribing, little systematic and empirical research has been undertaken to investigate the factors thought to influence such prescribing. While studies investigating the prescribing behaviours of General Practitioners (GP's) have illustrated the complex nature of the decision making process in the context of general practice, no similar efforts have yet been directed at examining the prescribing behaviours of Consultant Psychiatrists. Using The Critical Incident Technique, the author interviewed Consultant Psychiatrists in the Republic of Ireland to gather information relating not only to their patterns of prescribing for learning disabled populations, but also to examine reasons influencing their prescribing in addition to several related factors. Part two of this thesis presents the findings from this study and a number of issues are raised, not only in relation to attempting to account for the findings from part one of the thesis, but also with respect to implications for improved management and clinical practice.

Can population-level variation in early childhood development be measured in a manner that supports service planning and intervention?

Background: The Early Development Instrument (EDI) is a population-level measure of five developmental domains at school-entry age. The overall aim of this thesis was to explore the potential of the EDI as an indicator of early development in Ireland. Methods: A cross-sectional study was conducted in 47 primary schools in 2011 using the EDI and a linked parental questionnaire. EDI (teacher completed) scores were calculated for 1,344 children in their first year of full-time education. Those scoring in the lowest 10% of the sample population in one or more domains were deemed to be 'developmentally vulnerable'. Scores were correlated with contextual data from the parental questionnaire and with indicators of area and school-level deprivation. Rasch analysis was used to determine the validity of the EDI. Results: Over one quarter (27.5%) of all children in the study were developmentally vulnerable. Individual characteristics associated with increased risk of vulnerability were being male; under 5 years old; and having English as a second language. Adjusted for these demographics, low birth weight, poor parent/child interaction and mother’s lower level of education showed the most significant odds ratios for developmental vulnerability. Vulnerability did not follow the area-level deprivation gradient as measured by a composite index of material deprivation. Children considered by the teacher to be in need of assessment also had lower scores, which were not significantly different from those of children with a clinical diagnosis of special needs. all domains showed at least reasonable fit to the Rasch model supporting the validity of the instrument. However, there was a need for further refinement of the instrument in the Irish context. Conclusion: This thesis provides a unique snapshot of early development in Ireland. The EDI and linked parental questionnaires are promising indicators of the extent, distribution and determinants of developmental vulnerability.

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.

Childhood obesity in Ireland: recent trends and modifiable determinants

Background: Childhood obesity is a global epidemic posing a significant threat to the health and wellbeing of children. To reverse this epidemic, it is essential that we gain a deeper understanding of the complex array of driving factors at an individual, family and wider ecological level. Using a social-ecological framework, this thesis investigates the direction, magnitude and contribution of risk factors for childhood overweight and obesity at multiple levels of influence, with a particular focus on diet and physical activity. Methods: A systematic review was conducted to describe recent trends (from 2002-2012) in childhood overweight and obesity prevalence in Irish school children from the Republic of Ireland. Two datasets (Cork Children’s Lifestyle [CCLaS] Study and the Growing Up in Ireland [GUI] Study) were used to explore determinants of childhood overweight and obesity. Individual lifestyle factors examined were diet, physical activity and sedentary behaviour. The determinants of physical activity were also explored. Family factors examined were parental weight status and household socio-economic status. The impact of food access in the local area on diet quality and body mass index (BMI) was investigated as an environmental level risk factor. Results: Between 2002 and 2012, the prevalence of childhood overweight and obesity in Ireland remained stable. There was some evidence to suggest that childhood obesity rates may have decreased slightly though one in four Irish children remained either overweight or obese. In the CCLaS study, overweight and obese children consumed more unhealthy foods than normal weight children. A diet quality score was constructed based on a previously validated adult diet score. Each one unit increase in diet quality was significantly associated with a decreased risk of childhood overweight and obesity. Individual level factors (including gender, being a member of a sports team, weight status) were more strongly associated with physical activity levels than family or environmental factors. Overweight and obese children were more sedentary and less active than normal weight children. There was a dose response relationship between time spent at moderate to vigorous physical activity (MVPA) and the risk of childhood obesity independent of sedentary time. In contrast, total sedentary time was not associated with the risk of childhood obesity independent of MVPA though screen time was associated with childhood overweight and obesity. In the GUI Study, only one in five children had 2 normal weight parents (or one normal weight parent in the case of single parent families). Having overweight and obese parents was a significant risk factor for overweight and obesity regardless of socio-economic characteristics of the household. Family income was not associated with the odds of childhood obesity but social class and parental education were important risk factors for childhood obesity. Access to food stores in the local environment did not impact dietary quality or the BMI of Irish children. However, there was some evidence to suggest that the economic resources of the family influenced diet and BMI. Discussion: Though childhood overweight and obesity rates appear to have stabilised over the previous decade, prevalence rates are unacceptably high. As expected, overweight and obesity were associated with a high energy intake and poor dietary quality. The findings also highlight strong associations between physical inactivity and the risk of overweight and obesity, with effect sizes greater than what have been typically found in adults. Important family level determinants of childhood overweight and obesity were also identified. The findings highlight the need for a multifaceted approach, targeting a range of modifiable determinants to tackle the problem. In particular, policies and interventions at the shared family environment or community level may be an effective mean of tackling this current epidemic.

Diphtheria, the public health response and the origins of the childhood immunisation programme in Ireland

In common with most countries, the childhood immunisation programme in Ireland was founded on a successful public health response to diphtheria. The success of the antidiphtheria public health intervention in Ireland has meant that no case of the disease has been recorded in the state for almost fifty years. This is a significant achievement considering that diphtheria continues to appear annually in many European states, albeit in much reduced numbers on former years. For parents and children of nineteenth, and early twentieth-century Ireland, diphtheria represented the ‘most dreaded disease of childhood’, however, for their modern day counterparts diphtheria is no more than an obscure disease mentioned in leaflets promoting the benefits of childhood immunisation. In Ireland, diphtheria has been consigned to history, and so too have the horrors and mass fatalities once associated with it. But how was this achieved? Was active immunisation received with open arms by public health authorities, the wider medical community, and the general public? This study tackles these questions by undertaking the first historical examination of the issues which underpin the origins of active immunisation in Ireland. It explores the driving forces that shaped the national childhood immunisation programme, and those that opposed them. In addition, it examines the complex social implications attendant on the introduction of this mass public health intervention in an Irish context.