The nature of emotional support and counselling provision for people with sight loss in the United Kingdom

People with sight loss in the United Kingdom are known to have lower levels of emotional wellbeing and to be at higher risk of depression. Consequently ‘having someone to talk to’ is an important priority for people with visual impairment. An on-line survey of the provision of emotional support and counselling for people affected by sight loss across the UK was undertaken. The survey was distributed widely and received 182 responses. There were more services offering ‘emotional support’, in the form of listening and information and advice giving, than offered ‘counselling’. Services were delivered by providers with differing qualifications in a variety of formats. Waiting times were fairly short and clients presented with a wide range of issues. Funding came from a range of sources, but many felt their funding was vulnerable. Conclusions have been drawn about the need for a national standardised framework for the provision of emotional support and counselling services for blind and partially sighted people in the UK

Prestaciones ocupacionales/laborales para personas con enfermedad mental. Estudio comparativo por CCAA

El estigma y la discriminación que sufren las personas con enfermedad mental y discapacidad dan como resultado dificultades de incorporación socio-laboral, situaciones de vulnerabilidad y exclusión social. En este documento se recogen, visualizan y comparan las diferentes prestaciones del ámbito ocupacional y laboral destinadas a las personas con enfermedad mental y discapacidad derivada de ésta de las siguientes Comunidades Autónomas uniprovinciales de España: Asturias, Cantabria, La Rioja, Madrid, Murcia y Navarra. A través del mismo, se puede conocer la situación laboral de las personas con enfermedad mental y discapacidad derivada de ésta y aclarar los tipos de Centros y programas específicos que hay para este colectivo en las diferentes Comunidades estudiadas. Se elaboran y aportan al trabajo tablas comparativas de síntesis de resultados para obtener una visión global de la situación estudiada.

Camera-Based Interfaces and Assistive Software for People with Sever Motion Impairments

Intelligent assistive technology can greatly improve the daily lives of people with severe paralysis, who have limited communication abilities. People with motion impairments often prefer camera-based communication interfaces, because these are customizable, comfortable, and do not require user-borne accessories that could draw attention to their disability. We present an overview of assistive software that we specifically designed for camera-based interfaces such as the Camera Mouse, which serves as a mouse-replacement input system. The applications include software for text-entry, web browsing, image editing, animation, and music therapy. Using this software, people with severe motion impairments can communicate with friends and family and have a medium to explore their creativity.

Real Time Eye Tracking and Blink Detection with USB Cameras

A human-computer interface (HCI) system designed for use by people with severe disabilities is presented. People that are severely paralyzed or afflicted with diseases such as ALS (Lou Gehrig's disease) or multiple sclerosis are unable to move or control any parts of their bodies except for their eyes. The system presented here detects the user's eye blinks and analyzes the pattern and duration of the blinks, using them to provide input to the computer in the form of a mouse click. After the automatic initialization of the system occurs from the processing of the user's involuntary eye blinks in the first few seconds of use, the eye is tracked in real time using correlation with an online template. If the user's depth changes significantly or rapid head movement occurs, the system is automatically reinitialized. There are no lighting requirements nor offline templates needed for the proper functioning of the system. The system works with inexpensive USB cameras and runs at a frame rate of 30 frames per second. Extensive experiments were conducted to determine both the system's accuracy in classifying voluntary and involuntary blinks, as well as the system's fitness in varying environment conditions, such as alternative camera placements and different lighting conditions. These experiments on eight test subjects yielded an overall detection accuracy of 95.3%.

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 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.

Accommodating interruptions: a grounded theory of young people with asthma

Background: Accommodating Interruptions is a theory that emerged in the context of young people who have asthma. A background to the prevalence and management of asthma in Ireland is given to situate the theory. Ireland has the fourth highest incidence of asthma in the world, with almost one in five Irish young people having asthma. Although national and international asthma management guidelines exist it is accepted that the symptom control of asthma among the young people population is poor. Aim: The aim of this research is to investigate the lives of young people who have asthma, to allow for a deeper understanding of the issues affecting them. Methods: This research was undertaken using a Classic Grounded Theory approach. It is a systematic approach to allowing conceptual emergence from data in generating a theory that explains behaviour in resolving the participant’s main concern. The data were collected through in-depth interviews with young people aged 11-16 years who had asthma for over one year. Data were also collected from participant diaries. Constant comparative analysis, theoretical coding and memo writing were used to develop the theory. Results: The theory explains how young people resolve their main concern of being restricted, by maximizing their participation and inclusion in activities, events and relationships in spite of their asthma. They achieve this by accommodating interruptions in their lives in minimizing the effects of asthma on their everyday lives. Conclusion: The theory of accommodating interruptions explains young people’s asthma management behaviours in a new way. It allows us to understand how and why young people behave the way they do in order minimise the effect of asthma on their lives. The theory adds to the body of knowledge on young people with asthma and challenges some viewpoints regarding their behaviours.

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.

Development and psychometric evaluation of the spirituality instrument (SpI-27) in a sample of people with chronic illness

Background: Spirituality is fundamental to all human beings, existing within a person, and developing until death. This research sought to operationalise spirituality in a sample of individuals with chronic illness. A review of the conceptual literature identified three dimensions of spirituality: connectedness, transcendence, and meaning in life. A review of the empirical literature identified one instrument that measures the three dimensions together. Yet, recent appraisals of this instrument highlighted issues with item formulation and limited evidence of reliability and validity. Aim: The aim of this research was to develop a theoretically-grounded instrument to measure spirituality – the Spirituality Instrument-27 (SpI-27). A secondary aim was to psychometrically evaluate this instrument in a sample of individuals with chronic illness (n=249). Methods: A two-phase design was adopted. Phase one consisted of the development of the SpI-27 based on item generation from a concept analysis, a literature review, and an instrument appraisal. The second phase established the psychometric properties of the instrument and included: a qualitative descriptive design to establish content validity; a pilot study to evaluate the mode of administration; and a descriptive correlational design to assess the instrument’s reliability and validity. Data were analysed using SPSS (Version 18). Results: Results of exploratory factor analysis concluded a final five-factor solution with 27 items. These five factors were labelled: Connectedness with Others, Self-Transcendence, Self-Cognisance, Conservationism, and Connectedness with a Higher Power. Cronbach’s alpha coefficients ranged from 0.823 to 0.911 for the five factors, and 0.904 for the overall scale, indicating high internal consistency. Paired-sample t-tests, intra-class correlations, and weighted kappa values supported the temporal stability of the instrument over 2 weeks. A significant positive correlation was found between the SpI-27 and the Spirituality Index of Well-Being, providing evidence for convergent validity. Conclusion: This research addresses a call for a theoretically-grounded instrument to measure spirituality.

Anti-cholinergic load, health care utilization, and survival in people with advanced cancer: a pilot study.

INTRODUCTION: Anti-cholinergic medications have been associated with increased risks of cognitive impairment, premature mortality and increased risk of hospitalisation. Anti-cholinergic load associated with medication increases as death approaches in those with advanced cancer, yet little is known about associated adverse outcomes in this setting. METHODS: A substudy of 112 participants in a randomised control trial who had cancer and an Australia modified Karnofsky Performance Scale (AKPS) score (AKPS) of 60 or above, explored survival and health service utilisation; with anti-cholinergic load calculated using the Clinician Rated Anti-cholinergic Scale (modified version) longitudinally to death. A standardised starting point for prospectively calculating survival was an AKPS of 60 or above. RESULTS: Baseline entry to the sub-study was a mean 62 +/- 81 days (median 37, range 1-588) days before death (survival), with mean of 4.8 (median 3, SD 4.18, range 1 - 24) study assessments in this time period. Participants spent 22% of time as an inpatient. There was no significant association between anti-cholinergic score and time spent as an inpatient (adjusted for survival time) (p = 0.94); or survival time. DISCUSSION: No association between anti-cholinergic load and survival or time spent as an inpatient was seen. Future studies need to include cognitively impaired populations where the risks of symptomatic deterioration may be more substantial.

Caregivers of people with neurodegenerative diseases: profile and unmet needs from a population-based survey in South Australia.

INTRODUCTION: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. METHODS: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using chi(2) were complemented with a regression analysis. RESULTS: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. CONCLUSION: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.

Supporting students with learning disabilities to explore linear relationships using online learning objects

The study of linear relationships is foundational for mathematics teaching and learning. However, students’ abilities connect different representations of linear relationships have proven to be challenging. In response, a computer-based instructional sequence was designed to support students’ understanding of the connections among representations. In this paper we report on the affordances of this dynamic mode of representation specifically for students with learning disabilities. We outline four results identified by teachers as they implemented the online lessons.

Distress in children with learning disabilities at a respite unit: perspective on their experiences

Numerous studies have investigated the benefits of respite to families with a disabled child. Far fewer have examined the effects on the child and none have systematically compared information about this from different sources. Reports of behavioural reactions and views on distress were gathered from parents, teachers and respite staff. Children were also asked for their views. Over half the children (54%) were reported to show medium or strong negative reactions lasting for 1 or more days by a parent or teacher. Reported reactions varied widely between home and school and no concordance was found between parents, teachers and respite staff groups regarding distress. Some children's views differed from those of their parent or teacher. The findings highlight the extent of differences in perspectives and suggest the need for greater awareness of the possible distress to children attending respite. This is discussed in relation to factors such as the potential conflict of interests between parents and children, communication and behavioural difficulties, and the context in which the child is observed.