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.

Experiences and desires of people with tetraplegia living with and without electronic aids to daily living: an Irish focus group study

This qualitative descriptive study explores the lived experience for persons with a high cervical spinal cord injury who have Electronic Aids to Daily Living (EADLs), and for persons who have no EADLs. Fifteen people with cervical spinal cord injuries attended four focus groups. Data analysis uncovered a novel framework of several themes that were organised into three categories: experiences, desires and meanings of living with EADL. Users’ and non users’ groups revealed homogenous themes. Experiences and desires are explored further in this paper. Themes within the category of experiences included: EADL devices, supply support and training, abandonment, mouthsticks and powered wheelchairs. Desires included: simple stuff, reliability, aesthetics and voice activation. Findings offer valuable personal insights about life with EADL to be considered by all involved with EADL.

The GrEAT pack: generic electronic assistive technology environmental control system - information booklet

This is a user manual for your electronic assistive technology environmental control system trial pack or in simple words – a few bits of technology that can let you control some household appliances. This information is intended for you, your family and carers.

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.

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.

Hospital clinicians information behaviour and attitudes towards the 'Clinical Informationist': an Irish survey

Background: Hospital clinicians are increasingly expected to practice evidence-based medicine (EBM) in order to minimize medical errors and ensure quality patient care, but experience obstacles to information-seeking. The introduction of a Clinical Informationist (CI) is explored as a possible solution. Aims:  This paper investigates the self-perceived information needs, behaviour and skill levels of clinicians in two Irish public hospitals. It also explores clinicians perceptions and attitudes to the introduction of a CI into their clinical teams. Methods: A questionnaire survey approach was utilised for this study, with 22 clinicians in two hospitals. Data analysis was conducted using descriptive statistics. Results: Analysis showed that clinicians experience diverse information needs for patient care, and that barriers such as time constraints and insufficient access to resources hinder their information-seeking. Findings also showed that clinicians struggle to fit information-seeking into their working day, regularly seeking to answer patient-related queries outside of working hours. Attitudes towards the concept of a CI were predominantly positive. Conclusion: This paper highlights the factors that characterise and limit hospital clinicians information-seeking, and suggests the CI as a potentially useful addition to the clinical team, to help them to resolve their information needs for patient care.

Investigation of growth and stress tolerance characteristics of Cronobacter spp.

Cronobacter spp. are opportunistic pathogens which can be isolated from a wide variety of foods and environments. They are Gram negative, motile, non-spore forming, peritrichous rods of the Enterobacteriaceae family. This food-borne pathogen is associated with the ingestion of contaminated infant milk formula (IMF), causing necrotizing enterocolitis, sepsis and meningitis in neonatal infants. The work presented in this thesis involved the investigation and characterisation of a bank of Cronobacter strains for their ability to tolerate physiologically relevant stress conditions that are commonly encountered in the gastrointestinal tract. While all strains were able to endure the suboptimal conditions tested, noteworthy variations were observed between strains. A collection of these strains were Lux-tagged to determine if their growth could be tracked in IMF by measuring bioluminescence. The resulting strains could be easily and reproducibly monitored in real time by measuring light emission. Following this a transposon mutagenesis library was created in one of the Lux-tagged strains of Cronobacter sakazakii. This library was screened for mutants with affected growth in milk. The majority of mutants identified were associated with amino acid metabolism. The final section of this thesis identified genes involved in the tolerance of C. sakazakii to the milk derived antimicrobial peptide, Lactoferricin B (Lfcin B). This was achieved by creating a transposon mutagenesis library in C. sakazakii and screening for mutants with increased susceptibility to Lfcin B. Overall this thesis demonstrates the variation between Cronobacter strains. It also identifies genes required for growth of the bacteria in milk, as well as genes needed for antimicrobial peptide tolerance.

Lower extremity amputation in people with diabetes: Trends and determinants

Introduction: The prevalence of diabetes is rising rapidly. Assessing quality of diabetes care is difficult. Lower Extremity Amputation (LEA) is recognised as a marker of the quality of diabetes care. The focus of this thesis was first to describe the trends in LEA rates in people with and without diabetes in the Republic of Ireland (RoI) in recent years and then, to explore the determinants of LEA in people with diabetes. While clinical and socio-demographic determinants have been well-established, the role of service-related factors has been less well-explored. Methods: Using hospital discharge data, trends in LEA rates in people with and without diabetes were described and compared to other countries. Background work included concordance studies exploring the reliability of hospital discharge data for recording LEA and diabetes and estimation of diabetes prevalence rates in the RoI from a nationally representative study (SLAN 2007). To explore determinants, a systematic review and meta-analysis assessed the effect of contact with a podiatrist on the outcome of LEA in people with diabetes. Finally, a case-control study using hospital discharge data explored determinants of LEA in people with diabetes with a particular focus on the timing of access to secondary healthcare services as a risk factor. Results: There are high levels of agreement between hospital discharge data and medical records for LEA and diabetes. Thus, hospital discharge data was deemed sufficiently reliable for use in this PhD thesis. A decrease in major diabetes-related LEA rates in people with diabetes was observed in the RoI from 2005-2012. In 2012, the relative risk of a person with diabetes undergoing a major LEA was 6.2 times (95% CI 4.8-8.1) that of a person without diabetes. Based on the systematic review and meta-analysis, contact with a podiatrist did not significantly affect the relative risk (RR) of LEA in people with diabetes. Results from the case-control study identified being single, documented CKD and documented hypertension as significant risk factors for LEA in people with diabetes whilst documented retinopathy was protective. Within the seven year time window included in the study, no association was detected between LEA in patients with diabetes and timing of patient access to secondary healthcare for diabetes management. Discussion: Many countries have reported reduced major LEA rates in people with diabetes coinciding with improved organisation of healthcare systems. Reassuringly, these first national estimates in people with diabetes in the RoI from 2005 to 2012 demonstrated reducing trends in major LEA rates. This may be attributable to changes in diabetes care and also, secular trends in smoking, dyslipidaemia and hypertension. Consistent with international practice, LEA trends data in Ireland can be used to monitor quality of care. Quantifying this improvement precisely, though, is problematic without robust denominator data on the prevalence of diabetes. However, a reduction in major diabetes-related LEA rates suggests improved quality of diabetes care. Much controversy exists around the reliability of hospital discharge data in the RoI. This thesis includes the first multi-site study to explore this issue and found hospital discharge data reliable for the reporting of the procedure of LEA and diagnosis of diabetes. This project did not detect protective effects of access to services including podiatry and secondary healthcare for LEA in people with diabetes. A major limitation of the systematic review and meta-analysis was the design and quality of the included studies. The data available in the area of effect of contact with a podiatrist on LEA risk are too sparse to say anything definitive about the efficacy of podiatry on LEA. Limitations of the case-control study include lack of a diabetes register in Ireland, restricted information from secondary healthcare and lack of data available from primary healthcare. Due to these issues, duration of disease could not be accounted for in the study which limits the conclusions that can be drawn from the results. The model of diabetes care in the RoI is currently undergoing a re-configuration with plans to introduce integrated care. In the future, trends in LEA rates should be continuously monitored to evaluate the effectiveness of changes to the healthcare system. Efforts are already underway to improve the availability of routine data from primary healthcare with the recent development of the iPCRN (Irish Primary Care Research Network). Linkage of primary and secondary healthcare records with a unique patient identifier should be the goal for the future.

At what price? A cost-effectiveness analysis comparing trial of labour after previous caesarean versus elective repeat caesarean delivery

Background: Elective repeat caesarean delivery (ERCD) rates have been increasing worldwide, thus prompting obstetric discourse on the risks and benefits for the mother and infant. Yet, these increasing rates also have major economic implications for the health care system. Given the dearth of information on the cost-effectiveness related to mode of delivery, the aim of this paper was to perform an economic evaluation on the costs and short-term maternal health consequences associated with a trial of labour after one previous caesarean delivery compared with ERCD for low risk women in Ireland.Methods: Using a decision analytic model, a cost-effectiveness analysis (CEA) was performed where the measure of health gain was quality-adjusted life years (QALYs) over a six-week time horizon. A review of international literature was conducted to derive representative estimates of adverse maternal health outcomes following a trial of labour after caesarean (TOLAC) and ERCD. Delivery/procedure costs derived from primary data collection and combined both "bottom-up" and "top-down" costing estimations.Results: Maternal morbidities emerged in twice as many cases in the TOLAC group than the ERCD group. However, a TOLAC was found to be the most-effective method of delivery because it was substantially less expensive than ERCD ((sic)1,835.06 versus (sic)4,039.87 per women, respectively), and QALYs were modestly higher (0.84 versus 0.70). Our findings were supported by probabilistic sensitivity analysis.Conclusions: Clinicians need to be well informed of the benefits and risks of TOLAC among low risk women. Ideally, clinician-patient discourse would address differences in length of hospital stay and postpartum recovery time. While it is premature advocate a policy of TOLAC across maternity units, the results of the study prompt further analysis and repeat iterations, encouraging future studies to synthesis previous research and new and relevant evidence under a single comprehensive decision model.

Four nations feminism: Una Troy and Menna Gallie

The emergence of four nations framework in literary and historical scholarship has helped us to arrive at a fuller understanding of the complex and overlapping histories of the islands of Britain and Ireland, while recent research into Wales and Ireland in particular has helped to make the map of our relations more fully comprehensible. But what is the relevance and meaning of the four nations context for womenâ s writing in Ireland and Wales? What part does gender play in the interconnected histories of Wales and Ireland, and how are questions of sexual and artistic identity addressed within texts that imagine British-Irish history in gendered terms? This lecture identifies finds evidence of a feminist reimagining of archipelagic relationships by two writers: Munster novelist and playwright Una Troy, and Welsh writer Menna Gallie, born into a mining community on the western edge of the South Wales coalfields. Both Troy and Gallie wrote novels that deploy plots of female friendship to interrogate the relationship between gender and national affiliation in a four nations context.

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.

Practice-based personas: integrated user and practice models

Practices are routinised behaviours with social and material components and complex relationships over space and time. Practice-based design goes beyond interaction design to consider how these components and their relationships impact on the formation and enactment of a practice, where technology is just one part of the practice. Though situated user-centred design methods such as participatory design are employed for the design of practice, demand exists for additional methods and tools in this area. This paper introduces practice-based personas as an extension of the persona approach popular in interaction design, and demonstrates how a set of practice-based personas was developed for a given domain – academic practice. The three practice-based personas developed here are linked to a catalogue of forty practices, offering designers both a user perspective and a practice perspective when designing for the domain.

The Protection of Life During Pregnancy Act 2013: Suicide, dignity and the Irish discourse on abortion

Accepted Version

Hidden land and changing landscape: Narratives about Mount Khangchendzonga among the Lepcha and the Lhopo

This article explores contemporary ‘hidden land’ narrative constructs of Máyel Lyáng and Beyul Dremojong in Sikkim, India, as conceived by the Lepcha and the Lhopo, two ‘scheduled tribes’. Lepcha and Lhopo narratives about these hidden lands in Mount Khangchendzonga inform us about their contemporary and historical, indigenous and Buddhist contexts and the interactions between these contexts. Lhopo perspectives on the hidden Beyul Dremojong echo classical Tibetan Buddhist ‘revealed treasure’ guidebooks and exist within the complex and reciprocal relationship between the Lhopo and the land they inhabit; development initiatives are understood to have caused illness and death in the Lhopo community of Tashiding, often referred to as the geographical ‘center’ of Beyul Dremojong. Contemporary Lepcha comprehensions of Máyel Lyáng, described in oral narratives within an ethnic community whose cosmology is intimately connected with Mount Khangchendzonga, today show some influence of Lhopo interpretations of Beyul Dremojong and the treasure texts; they also reflect Lepcha fears about cultural dispersion. Present-day narratives about both hidden lands reference notable political events in modern Sikkimese history (encounters with the British; the Chinese occupation of Tibet).