The meaning of environmental control systems (ECS) for people with spinal cord injury: An occupational therapist explores an intervention

Environmental Control Systems (ECS), enable people with high cervical Spinal Cord Injury (high SCI) to control and access everyday electronic devices. In Ireland, however, access for those who might benefit from ECS is limited. This study used a qualitative approach to explore the insider experience of an ECS starter-pack developed by the author, an occupational therapist. The primary research questions: what is it really like to live with ECS, and what does it mean to live with ECS, were explored using a phenomenological methodology conducted in three phases. In Phase 1 fifteen people with high SCI met twice in four focus groups to discuss experiences and expectations of ECS. Thematic analysis (Krueger & Casey, 2000), influenced by the psychological phenomenological approach (Creswell, 1998), yielded three categories of rich, practical, phenomenological findings: ECS Usage and utility; ECS Expectations and The meaning of living with ECS. Phase 1 findings informed Phase 2 which consisted of the development of a generic electronic assistive technology pack (GrEAT) that included commercially available constituents as well as short instructional videos and an information booklet. This second phase culminated in a one-person, three-week pilot trial. Phase 3 involved a six person, 8-week trial of the GrEAT, followed by individual in-depth interviews. Interpretative Phenomenological Analysis IPA (Smith, Larkin & Flowers, 2009), aided by computer software ATLAS.ti and iMindmap, guided data analysis and identification of themes. Getting used to ECS, experienced as both a hassle and engaging, resulted in participants being able to Take back a little of what you have lost, which involved both feeling enabled and reclaiming a little doing. The findings of this study provide substantial insights into what it is like to live with ECS and the meanings attributed to that experience. Several practical, real world implications are discussed.

Living long-term with acquired brain injury in Ireland: towards a counter discourse

Irish literature on Acquired Brain Injury (ABI) is very scant and is mainly deficits and/or needs based. The focus is generally on how to manage the short term needs of the younger population with ABI. The starting position of my thesis is that people living long-term with ABI are important participants in developing knowledge about this social phenomenon, living with ABI while accepting that their brain injury does not determine them. Six mature adults with ABI and their six significant others participated in this longitudinal study. Using a narrative approach in interviews, over twenty months, five repeat individual interviews with each of the twelve participants was held. From this I gained an understanding of their lived experiences, their life-world and their experiences of our local public ABI/disability services, systems and discourse. Along with this new empirical data, theoretical developments from occupational therapy, occupational science, sociology, and disability studies were also used within a meta-narrative informed by critical theory and critical realism to develop a synthesis of this study. Social analysis of their narratives co-constructed with me, allowed me generate nuanced insights into tendencies and social processes that impacted and continues to impact on their everyday-everynight living. I discuss in some depth here, the relational attitudinal, structural, occupational and environmental supports, barriers or discrimination that they face(d) in their search for social participation and community inclusion. Personal recognition of the disabled participants by their family, friends and/or local community, was generally enhanced after much suffering, social supports, slow recovery, and with some form of meaningful occupational engagement. This engagement was generally linked with pre-injury interests or habits, while Time itself became both a major aid and a need. The present local ABI discourse seldom includes advocacy and inclusion in everyday/every night local events, yet most participants sought both peer-support or collective recognition, and social/community inclusion to help develop their own counter-discourse to the dominant ABI discourse. This thesis aims to give a broad social explanation on aspects of their social becoming, 'self-sameness' and social participation, and the status of the disabled participants wanting to live 'the slow life'. Tensions and dialectical issues involved in moving from the category of a person in coma, to person with a disability, to being a citizen should not demote the need for special services. While individualized short-term neuro-rehabilitation is necessary, it is not sufficient. Along with the participants, this researcher asks that community health and/or social care planners and service-providers rethink how ABI is understood and represented, and how people with ABI are included in their local communities

Management of safety climate and the psychosocial work environment – new challenges for occupational health and safety professionals?

Introduction: The work environment and Occupational Health and Safety (OHS) practice have changed over the last number of years. A holistic OHS approach has been recommended by the authorities in this field (e.g. World Health Organisation (WHO), European Agency for Safety and Health at Work (EU-OSHA) and the International Labour Organisation (ILO)). This involves a unified action engaging elements of the physical and psychosocial workplace with greater focus on prevention and promotion of health and wellbeing. The health and safety practitioner (HSP) has been recognised as one of the main agents for implementation of OHS. Within an organisation they act as a leader of change and a professional who shapes health and safety while safeguarding the wellbeing of individuals at work. Additionally, safety climate (SC) has been developed as an essential concept for OHS of an organisation, its productivity and the wellbeing of its workforce. Scholars and practitioners have recognised the great need for further empirical evidence on the HSP’s role in a changing work environment that increasingly requires the use of preventative measures and the assessment and management of psychosocial work-related risks. This doctoral research brings together the different concepts used in OHS and Public Health including SC, Psychosocial workplace risks, Health Promotion and OHS performance. The associations between these concepts are analysed bearing in mind the WHO Healthy Workplace Framework and three of its main components (physical and psychosocial work environment and health resources). This thesis aims to establish a deeper understanding of the practice and management of OHS in Ireland and the UK, exploring the role of HSPs (employed in diverse sectors of activity) and of SC in the OHS of organisations. Methods: One systematic review and three cross-sectional research studies were performed. The systematic review focussed on the evidence compiled for the association of SC with accidents and injuries at work, clarifying this concept’s definition and its most relevant dimensions. The second article (chapter 3) explored the association of SC with accidents and injuries in a sample of workers (n=367) from a pharmaceutical industry and compared permanent with non-permanent workers. Associations of safety climate with employment status and with self-reported occupational accidents/injuries were studied through logistic regression modelling. The third and fourth papers in this thesis investigated the main tasks performed by HSPs, their perceptions of SC, health climate (HC), psychosocial risk factors and health outcomes as well as work efficacy. Validated questionnaires were applied to a sample of HSPs in Ireland and UK, members of the Institute of Occupational Safety and Health (n=1444). Chi-square analysis and logistic regression were used to assess the association between HSPs work characteristics and their involvement in the management of Psychosocial Risk Factors, Safety Culture and Health Promotion (paper 3). Multiple linear regression analysis was used to determine the association between SC, HC, psychosocial risk factors and health outcomes (general health and mental wellbeing) and self-efficacy. Results: As shown in the systematic review, scientific evidence is unable to establish the widely assumed causal link between SC and accidents and injuries. Nevertheless, the current results suggested that, particularly, the organisational dimensions of SC were associated with accidents and injuries and that SC is linked to health, wellbeing and safety performance in the organisation. According to the present research, contingent workers had lower SC perceptions but showed a lower accident/injury rate than their permanent colleagues. The associations of safety climate with accidents/injuries had opposite directions for the two types of workers as for permanent employees it showed an inverse relationship while for temporary workers, although not significant, a positive association was found. This thesis’ findings showed that HSPs are, to a very small degree, included in activities related to psychosocial risk management and assessment, to a moderate degree, involved in HP activities and, to a large degree, engaged in the management of safety culture in organisations. In the final research study, SC and HC were linked to job demands-control-support (JDCS), health, wellbeing and efficacy. JDCS were also associated with all three outcomes under study. Results also showed the contribution of psychosocial risk factors to the association of SC and HC with all the studied outcomes. These associations had rarely been recorded previously. Discussion & Conclusions: Health and safety climate showed a significant association with health, wellbeing and efficacy - a relationship which affects working conditions and the health and wellbeing of the workforce. This demonstrates the link of both SC and HC with the OHS and the general strength or viability of organisations. A division was noticed between the area of “health” and “safety” in the workplace and in the approach to the physical and psychosocial work environment. These findings highlighted the current challenge in ensuring a holistic and multidisciplinary approach for prevention of hazards and for an integrated OHS management. HSPs have shown to be a pivotal agent in the shaping and development of OHS in organisations. However, as observed in this thesis, the role of these professionals is still far from the recommended involvement in the management of psychosocial risk factors and could have a more complete engagement in other areas of OHS such as health promotion. Additionally, a strong culture of health and safety with supportive management and buy-in from all stakeholders is essential to achieve the ideal unified and prevention-focussed approach to OHS as recommended by the WHO, EU-OSHA and ILO.

Electronic aids to daily living: be able to do what you want

Purpose. This study explores the experiences of Irish people with high cervical spinal cord injuries living with electronic aids to daily living (EADL) and the meaning attributed to such systems in the context of participation in everyday life. Method. Qualitative methodology using a phenomenological approach was used to explore the phenomenon of living with EADL. Data were collected using four focus groups of users and nonusers of EADL (n = 15). All participants had high cervical spinal cord injuries (C3-5). Groups were video recorded, transcribed verbatim and analysed using descriptive phenomenological analysis. Findings. Findings revealed key elements of the meaning of living with EADL. Two key themes, time alone and changed relationships are described. These contribute to the super ordinate theme of autonomy. Findings suggest that participants perceived improvements in both anticipated and actual lived experiences with EADL. Themes are interrelated and together represent a summary of the experience of living with environmental controls. The themes described are similar to those found in other spinal injury studies relating to quality of life. Conclusions. Findings highlight differences in life experiences for those with and without EADL and provides motivation to address this difference. Such insights are valuable for both users and providers of EADL.

Mainstream technology as an occupational therapy tool: technophobe or technogeek?

Occupational therapists need to embrace the use of mainstream technology in their quest to ensure that therapy remains current and meaningful to their clients. Technology can be useful to improve both functional independence and occupational performance. This opinion piece introduces how occupational therapists can apply mainstream technologies, including information and communication technologies such as the internet, computer software, portable devices and computer games, in their everyday interventions.

Irish occupational therapists' views of electronic assistive technology

Introduction: Electronic assistive technology (EAT) includes computers, environmental control systems and information technology systems and is widely considered to be an important part of present-day life. Method: Fifty-six Irish community occupational therapists completed a questionnaire on EAT. All surveyed were able to identify the benefits of EAT. Results: While respondents reported that they should be able to assess for and prescribe EATs, only a third (19) were able to do so, and half (28) had not been able to do so in the past. Community occupational therapists identified themselves as havinga role in a multidisciplinary team to assess for and prescribe EAT. Conclusion: Results suggest that it is important for occupational therapists to have up-to-date knowledge and training in assistive and computer technologies in order to respond to the occupational needs of clients.

Health of the older worker in Ireland - occupational physical and psychosocial factors in the autumn of work life

Introduction: Worldwide, governments are striving to keep people in work to an older age. However, little is known about the effects of work on an older workforce. This thesis aims to investigate the importance of job characteristics to the antecedents and evolution of cardiovascular disease and functional limitations for the older worker (50+ years). Methods: Three studies were used in this thesis. The 5C (Cork Coronary Care Case- Control) Study investigated the association between job strain and a coronary event in males (n=208) 35-74 years old. The Mitchelstown Study examined the association between job characteristics and positive lifestyle behaviours and further, job characteristics and blood pressure for males and females 50-69 years (n=2,047). Finally, the Cork & Kerry Study investigated the physical effects of manual work and reported functional limitations/disabilities in a sample of 60-80 year olds (n=362). Results: Results from the 5C Study show a clear difference between younger (<50 years) and older (≥50 years) workers, with older workers who had a coronary event more likely to have high job strain and low job control. Data from the Mitchelstown Study showed workers with intermediate possibility for development or high quantitative demands (versus low) at work significantly more likely to have co-occurrence of positive lifestyle behaviours. Further, those who had high possibility for development were more likely to have high systolic blood pressure with no indication of recovery from this activation at night. Physically demanding work as reported by the participants of the Cork & Kerry Study was associated with functional limitations and activities of daily living disability for both the paid and unpaid worker. Discussion: The findings from this piece of work highlight the necessity to examine job characteristics and health outcomes in isolation for the over fifties. The challenge is to get this information into the workplace.

Early biomarkers to predict grade of encephalopathy following hypoxic ischaemic injury

The standard early markers for identifying and grading HIE severity, are not sufficient to ensure all children who would benefit from treatment are identified in a timely fashion. The aim of this thesis was to explore potential early biomarkers of HIE. Methods: To achieve this a cohort of infants with perinatal depression was prospectively recruited. All infants had cord blood samples drawn and biobanked, and were assessed with standardised neurological examination, and early continuous multi-channel EEG. Cord samples from a control cohort of healthy infants were used for comparison. Biomarkers studied included; multiple inflammatory proteins using multiplex assay; the metabolomics profile using LC/MS; and the miRNA profile using microarray. Results: Eighty five infants with perinatal depression were recruited. Analysis of inflammatory proteins consisted of exploratory analysis of 37 analytes conducted in a sub-population, followed by validation of all significantly altered analytes in the remaining population. IL-6 and IL-6 differed significantly in infants with a moderate/severely abnormal vs. a normal-mildly abnormal EEG in both cohorts (Exploratory: p=0.016, p=0.005: Validation: p=0.024, p=0.039; respectively). Metabolomic analysis demonstrated a perturbation in 29 metabolites. A Cross- validated Partial Least Square Discriminant Analysis model was developed, which accurately predicted HIE with an AUC of 0.92 (95% CI: 0.84-0.97). Analysis of the miRNA profile found 70 miRNA significantly altered between moderate/severely encephalopathic infants and controls. miRNA target prediction databases identified potential targets for the altered miRNA in pathways involved in cellular metabolism, cell cycle and apoptosis, cell signaling, and the inflammatory cascade. Conclusion: This thesis has demonstrated that the recruitment of a large cohortof asphyxiated infants, with cord blood carefully biobanked, and detailed early neurophysiological and clinical assessment recorded, is feasible. Additionally the results described, provide potential alternate and novel blood based biomarkers for the identification and assessment of HIE.

Living with acquired brain injury

This study found that natural community supports were comprised of two distinct groupings; firstly immediate families, friends and peer support groups; secondly neighbours and local community groups such as sporting and activity- based organisations and groups. The findings of this study indicate that living with acquired brain injury involves a process where the person moves from acute high intensity health services onto rehabilitative services and then onto re-establishing independent lives. It is evident that smooth transitions and interconnectivity of services are essential in facilitating this recovery process. Instrumental to the recovery is the support of immediate family and close friends, who form people’s immediate natural support network and go a long way towards facilitating individuals in rebuilding their lives. A key finding of this study is that broader natural community supports do not appear to play as central a role in supporting individuals to live independent lives when compared to the role of family and friends. The lack of involvement of broader community groups, in many ways, prompted individuals to contact formal support services. For the majority of participants, independence is facilitated through the combination of immediate natural community supports and formal services. The role of formal support services is key to developing broader community support networks. This study found a blurred division between formal services and broader community support networks. The authors recommended that the role of formal supports services in acting as a bridge between the needs of the individual and the development of meaningful community networks, be formally recognised and further developed. Additionally, they argued that the importance of the role of broader natural community, supports such as those provided by community and sporting groups must be enhanced. Greater awareness of the issues faced by people living with acquired brain injury and its often invisible nature is necessary in this endeavour. The authors stated it is important to recognise that there are multiple issues impacting on independent living and these issues intersect, for instance with age, gender, employment, qualifications and so on. A lack of public awareness of acquired brain injury was found to be a key barrier to independent living, along with issues relating to socialising, access to employment and finances. The findings of this study reflect the complexities of living with acquired brain injury and the need for holistic support that is cognisant of the factors which impact on integration. It is vital that flexible, personalised services are developed which are fit for purpose and meet the needs of not only people with acquired brain injury but also their immediate natural community support network. Recognition of the intersection between immediate/ broader natural community supports and formal services is also key to developing the comprehensive and practical supports required to achieve an independent life. This was a qualitative study and all participants were sourced through Headway, a community based service provider for people with ABI. Data collection was divided into two stages: firstly focus groups, followed by individual interviews. Four focus groups were convened in Cork (2), Dublin (1) and Limerick (1). Each focus group was facilitated by at least two members of the research team and a total of twenty-six individuals participated in the focus groups. Thematic analysis of the data was undertaken to guide and inform the second stage of the study; the individual interviews. Ten interviews were undertaken with individuals who presented with ABI in the Cork and Limerick regions.