ICT to enhance the triangle of life : the soil, the seed, and the life-giver farmer

This paper reports on the outcomes of an ICT enabled social sustainability project “Green Lanka1” trialled in the Wilgamuwa village, which is situated in the Dambulla district of Sri Lanka. The main goals of the project were focused towards the provision of information about market prices, transportation options, agricultural decision support and modern agriculture practices of the farmer communities to improve their livelihood with the effective use of technologies. The project used Web and Mobile (SMS) enabled systems. The Green Lanka project was sponsored by the Information Communication Technology Agency (ICTA) of Sri Lanka under the Institutional Capacity Building Programme (ICBP) grant scheme which was sponsored by the World Bank. Six hundred families in Wilgamuwa village participated in the project activities. The project was designed, executed and studied through an Action Research approach. The lessons learned through the project activities provide an important understanding of the complex interaction between different stakeholders in the process of implementation of ICT enabled solutions within digitally divided societies. The paper analyses the processes used to reduce the resistance to change and improved involvement of farmer communities in ICT enabled projects. It also analyses the interaction between stakeholders involved in design and implementation of the project activities to improve the chances of project success.

A systematic review on quality of life among patients at 1 year after treatment for head and neck cancer

Introduction: Although advances in treatment modalities have improved the survival of head and neck (H&N) cancer patients over recent years, survivors’ quality of life (QoL) could be impaired for a number of reasons. The investigation of QoL determinants can inform the design of supportive interventions for this population. Objectives: To examine the QoL of H&N cancer survivors at 1 year after treatment and to identify potential determinants affecting their QoL. Methods: A systematic search of literature was done in December 2011 in five databases: Pubmed, Medline, Scopus, Sciencedirect and CINAHL, using combined search terms ‘head and neck cancer’, ‘quality of life’, ‘health-related quality of life’ and ‘systematic review’. The methodological qualities of selected studies were assessed by two reviewers using predefined criteria. The study characteristics and results were abstracted and summarized. Results: Thirty-seven studies met all inclusion criteria with methodological quality from moderate to high. The global QoL of H&N cancer survivors returned to baseline at 1 year after treatment. Significant improvement showed in emotional functioning while physical functioning, xerostomia, sticky/insufficient saliva, and fatigue were consistently worse at 12 months compared with baseline. Age, cancer sites and stages, social support, smoking, presence of feeding tube are significant QoL determinants at 12 months. Conclusions: Although the global QoL of H&N cancer survivors recover by 12 months after treatment, problems with physical functioning, fatigue, xerostomia and sticky saliva persist. Regular assessment should be carried out to monitor these problems. Further research is required to develop appropriate and effective interventions for this population.

A longitudinal study of grieving in family caregivers of people with dementia

A longitudinal study of grieving in family caregivers of people with dementia Recent research into dementia has identified the long term impact that the role of care giving for a relative with dementia has on family members This is largely due to the cognitive decline that characterises dementia and the losses that can be directly attributed to this. These losses include loss of memories, relationships and intimacy, and are often ambiguous so that the grief that accompanies them is commonly not recognised or acknowledged. The role and impact of pre-death or anticipatory grief has not previously been widely considered as a factor influencing health and well-being of family caregivers. Studies of grief in caregivers of a relative with dementia have concluded that grief is one of the greatest barriers to care giving and is a primary determinant of caregiver well-being. The accumulation of losses, in conjunction with experiences unique to dementia care giving, place family caregivers at risk of complicated grief. This occurs when integration of the death does not take place following bereavement and has been associated with a range of negative health outcomes. The aim of this research was to determine the influence of grief, in addition to other factors representing both positive and negative aspects of the role, on the health related quality of life of family caregivers of people with dementia, prior to and following the death of their relative with dementia. An exploratory research project underpinned by a conceptual framework of caregivers’ adaptation in the context of subjective appraisal of the strains and gains in their role was undertaken. The research comprised three studies. Study 1 was a scoping study that involved a series of semi-structured interviews with thirteen participants who were family caregivers of people with severe dementia or whose relative with dementia had died in the previous twelve months. The results of this study in conjunction with factors identified in the literature informed data collection for the further studies. Study 2 was a cross sectional survey of fifty caregivers recruited when their relative was in the moderate to severe stage of dementia. This study provided the baseline data for Study 3, a prospective cohort follow up study. Study 3 consisted of seventeen participants followed up at two time points after the death of their relative with dementia: six weeks and then six months following the death of the relative with dementia. The scoping study indicated that differences in appraisal of the care giving role and encounters with health professionals were related to levels of grief of caregivers prior to and following the death of the relative with dementia. This was supported in the baseline and follow up studies. In the baseline study, after adjusting for all variables in multivariate regression models, subjective appraisal of burden was found to make a significant contribution (p<.05) to mental health related quality of life. The two dependent variables, anticipatory grief and mental health related quality of life, were significantly (p<.01) correlated at a bivariate level. In the follow up study, linear mixed modelling and multiple regression analysis of data found that subjective appraisal of burden and resilience were significantly associated (p<.05 and p<.01, respectively) with mental health related quality of life over time. In addition, bereavement and complicated grief were significantly associated (p<.05) with mental health following the death of the relative. In this study social support and satisfaction with end of life care were found to be statistically associated (p<.05) with physical health related quality of life over time. The strong relationship between grief of caregivers and their health related quality of life over the entire care giving trajectory and period following the death of their relative highlights the urgent need for further research and interventions in this area. Overall results indicate that addressing the risk and protective factors including subjective appraisal of their care giving role, resilience, social support and satisfaction with end of life care of their relative, has the potential to both ameliorate negative health outcomes and to promote improved health for these caregivers. This research provides important information for development of targeted and appropriate interventions that aim to promote resilience and reduce the personal burden on caregivers of people with dementia.

Quality of life for older people in residential care is related to connectedness, willingness to enter care, and co-residents

Aim: To establish associations with quality of life (QOL) of older people in long-term residential care facilities in two New Zealand cities. Methods: The outcome measure of QOL was the Life Satisfaction Index. We used multiple linear regression to explore how broad categories of factors might contribute to QOL. Results: A total of 599 people (median age of 85 years; 74% women) participated. Response rates were 85% for facilities and 83% for residents. A resident's QOL was significantly related to the QOL of co-residents. QOL was higher for people who were more positive about entry to residential care, more physically able, and not depressed, and for those with more family and emotional support. Conclusion: Attending to the circumstances around entry to residential care may enhance QOL, as may promoting physical activity, treating depression and ensuring older people remain emotionally connected to their families. In choosing a facility, noting the QOL of co-residents is important.

Predictors of physical and mental health-related quality of life outcomes among myocardial infarction patients

Background Health-related quality of life (HRQoL) is an important outcome for patients diagnosed with coronary heart disease. This report describes predictors of physical and mental HRQoL at six months post-hospitalisation for myocardial infarction. Methods Participants were myocardial infarction patients (n=430) admitted to two tertiary referral centres in Brisbane, Australia who completed a six month coronary heart disease secondary prevention trial (ProActive Heart). Outcome variables were HRQoL (Short Form-36) at six months, including a physical and mental summary score. Baseline predictors included demographics and clinical variables, health behaviours, and psychosocial variables. Stepwise forward multiple linear regression analyses were used to identify significant independent predictors of six month HRQoL. Results Physical HRQoL was lower in participants who: were older (p<0.001); were unemployed (p=0.03); had lower baseline physical and mental HRQoL scores (p<0.001); had lower confidence levels in meeting sufficient physical activity recommendations (p<0.001); had no intention to be physically active in the next six months (p<0.001); and were more sedentary (p=0.001). Mental HRQoL was lower in participants who: were younger (p=0.01); had lower baseline mental HRQoL (p<0.001); were more sedentary (p=0.01) were depressed (p<0.001); and had lower social support (p=0.001). Conclusions This study has clinical implications as identification of indicators of lower physical and mental HRQoL outcomes for myocardial infarction patients allows for targeted counselling or coronary heart disease secondary prevention efforts. Trial registration Australian Clinical Trials Registry, Australian New Zealand Clinical Trials Registry, CTRN12607000595415. Keywords: Myocardial infarction; Secondary prevention; Cardiac rehabilitation; Telephone-delivered; Health-related quality of life; Health coaching; Tele-health

Science and engineering for whole of life : integrating education, research and public engagement in a collaborative environment

Policy makers increasingly recognise that an educated workforce with a high proportion of Science, Technology, Engineering and Mathematics (STEM) graduates is a pre-requisite to a knowledge-based, innovative economy. Over the past ten years, the proportion of first university degrees awarded in Australia in STEM fields is below the global average and continues to decrease from 22.2% in 2002 to 18.8% in 2010 [1]. These trends are mirrored by declines between 20% and 30% in the proportions of high school students enrolled in science or maths. These trends are not unique to Australia but their impact is of concern throughout the policy-making community. To redress these demographic trends, QUT embarked upon a long-term investment strategy to integrate education and research into the physical and virtual infrastructure of the campus, recognising that expectations of students change as rapidly as technology and learning practices change. To implement this strategy, physical infrastructure refurbishment/re-building is accompanied by upgraded technologies not only for learning but also for research. QUT’s vision for its city-based campuses is to create vibrant and attractive places to learn and research and to link strongly to the wider surrounding community. Over a five year period, physical infrastructure at the Gardens Point campus was substantially reconfigured in two key stages: (a) a >$50m refurbishment of heritage-listed buildings to encompass public, retail and social spaces, learning and teaching “test beds” and research laboratories and (b) destruction of five buildings to be replaced by a $230m, >40,000m2 Science and Engineering Centre designed to accommodate retail, recreation, services, education and research in an integrated, coordinated precinct. This landmark project is characterised by (i) self-evident, collaborative spaces for learning, research and social engagement, (ii) sustainable building practices and sustainable ongoing operation and; (iii) dynamic and mobile re-configuration of spaces or staffing to meet demand. Innovative spaces allow for transformative, cohort-driven learning and the collaborative use of space to prosecute joint class projects. Research laboratories are aggregated, centralised and “on display” to the public, students and staff. A major visualisation space – the largest multi-touch, multi-user facility constructed to date – is a centrepiece feature that focuses on demonstrating scientific and engineering principles or science oriented scenes at large scale (e.g. the Great Barrier Reef). Content on this visualisation facility is integrated with the regional school curricula and supports an in-house schools program for student and teacher engagement. Researchers are accommodated in a combined open-plan and office floor-space (80% open plan) to encourage interdisciplinary engagement and cross-fertilisation of skills, ideas and projects. This combination of spaces re-invigorates the on-campus experience, extends educational engagement across all ages and rapidly enhances research collaboration.

Does a functional activity programme improve function, quality of life, and falls for residents in long term care? Cluster randomised controlled trial

Objective To assess the effectiveness of an activity programme in improving function, quality of life, and falls in older people in residential care. Design Cluster randomised controlled trial with one year follow-up. Setting 41low level dependency residential carehomes in New Zealand. Participants 682 people aged 65 years or over. Interventions 330 residents were offered a goal setting and individualised activities of daily living activity programme by a gerontology nurse, reinforced by usual healthcare assistants; 352 residents received social visits. Main outcome measures Function (late life function and disability instruments, elderly mobility scale, FICSIT-4

Using images to communicate the hidden struggles of life on dialysis

Background: Nurse-patient communication in the hemodialysis context is unique given the amount of time spent together in a confined clinical room. Poor communication may lead to low quality nursing care and undesirable patient outcomes. Aim: To explore the use of images as a visual communication technique for nurses and patients in the hemodialysis context. Methods: Descriptive qualitative design. Fifty two cards containing specific photos, illustrations and words were used in conversations between patients (n = 9) and one of two nurse interviewers about being on hemodialysis. Interview transcripts were thematically analysed. Findings: An overall theme titled ‘revealing the hidden struggles of living on dialysis’ conceptually captured three sub-themes: (1) the increased importance of relationships; (2) the struggle with money; and (3) quality over quantity of life. The cards assisted in uncovering these often covert (to nurses) aspects of dialysis patients’ lives. Conclusion: Nurses may need to be aware of the dialysis patients’ hidden struggles which include the importance of relationships, financial issues and the importance of quality aspects such as travel. The use of images may assist in revealing the important issues for each patient struggling with the restrictive life that is imposed by dialysis.

Quality of life, fatigue and activity in Australians with chronic kidney disease : a longitudinal study

Aims and objectives This study sought to determine the relationship between health related quality of life (HRQoL), fatigue and activity levels of people with anaemia secondary to chronic kidney disease (CKD) over a 12 month period following the introduction of an erythropoietin stimulating agent (ESA). Background CKD occurs in five stages and it is a complex chronic illness which severely impacts on an individual’s HRQoL, and ability to perform everyday activities. Fatigue is also a common symptom experienced by people with CKD. Design and methods Using a longitudinal repeated measures design, 28 people with CKD completed the SF-36, human activity profile and fatigue severity scale at the commencement of an ESA and then at 3, 6 and 12 months. Results Over a 12 month period, people reported a significant change in HRQoL in relation to role physical, vitality, mental health/emotional well-being and overall mental health. However activity levels did not significantly improve during that time. Both the amount of breathlessness and level of fatigue were highest at baseline and declined over time. Both fatigue and breathlessness were correlated with less reported general health over time. Conclusion Renal nurses, in dialysis units and CKD outpatient clinics, have repeated and frequent contact with people with CKD over long periods of time, and are in an ideal position to routinely assess fatigue and activity levels and to institute timely interventions. Early detection would enable timely nursing interventions to optimise HRQoL and independent activity. Relevance to Clinical Practice Drawing on rehabilitation nursing interventions could assist renal nurses to minimize the burden of fatigue and its impact on simple everyday activities and a person’s quality of life. These interventions are important for people who are living at home and could assist in lowering the burden on home support services.

Review : "Quality of life: the assessment, analysis and interpretation of patient-reported outcomes (2nd Ed.)" by Peter M. Fayers & David Machin

An updated version, this excellent text is a timely addition to the library of any nurse researching in oncology or other settings where individuals’ quality of life must be understood. Health-related quality of life should be a central aspect of studies concerned with health and illness. Indeed, considerable evidence has recently emerged in oncology and other research settings that selfreported quality of life is of great prognostic significance and may be the most reliable predictor of subsequent morbidity and mortality. From a nursing perspective, it is also gratifying to note that novel therapy and other oncology studies increasingly recognize the importance of understanding patients’ subjective experiences of an intervention over time and to ascertain whether patients perceive that a new intervention makes a difference to their quality of life and treatment outcomes. Measurements of quality of life are now routine in clinical trials of chemotherapy drugs and are often considered the prime outcome of interest in the cost/benefit analyses of these treatments. The authors have extensive experience in qualityof- life assessment in cancer clinical trials, where most of the pioneering work into quality of life has been conducted. That said, many of the health-related qualityof- life issues discussed are common to many illnesses, and researchers outside of cancer should find the book equally helpful.

Development of a children's acute cough specific quality of life questionnaire (Pac-Qol)

The high burden of parental concern in children with chronic cough has been well documented. Acute cough in children (lasting less than 2 weeks) also has a significant impact on families, reflected by the number of doctor visits for cough. Currently there is no validated acute cough specific quality of life (QOL) measure for children. The objective of this study is to develop and validate an acute cough specific QOL questionnaire (PAC-QOL) for paediatric use. Here we present our data on item selection. Methods Two independent focus groups were conducted to determine relevant items. Parents discussed the impact of their child’s current or previous episodes of acute cough on their child, themselves and their family functioning. Transcripts were analyzed to determine whether discussions had reached an item saturation point. Items were also compared against our previously validated parent-centred children’s chronic cough specific QOL questionnaire (PC-QOL), which was used as a model. The newly developed acute cough specific QOL questionnaire is designed to assess the level of frequency of parents’ feelings and worry related to their child’s acute cough, using a 24-h time-point reference. Results Newly identified acute cough specific items include parental worry around whether or not they should take their child to a doctor or emergency department, and frequency of seeking assistance from friends and family. Conclusions While there are similarities between items identified for both acute and chronic cough, there are distinct features. Further data will be collected for item reduction and validation of this children’s acute cough specific QOL questionnaire.

Dengue or Kokobera? A case report from the top end of the Northern Territory

In early April 1998, the Centre for Disease Control in Darwin was notified of a possible case of dengue which appeared to have been acquired in the Northern Territory. Because dengue is not endemic to the Northern Territory, locally acquired infection has significant public health implications, particularly for vector identification and control to limit the spread of infection. Dengue IgM serology was positive on two occasions, but the illness was eventually presumptively identified as Kokobera infection. This case illustrates the complexity of interpreting flavivirus serology. Determining the cause of infection requires consideration of the clinical illness, the incubation period, the laboratory results and vector presence. Waiting for confirmation of results, before the institution of the public health measures necessary for a true case of dengue, was ultimately justified in this case. This is a valid approach in the Northern Territory, but may not be applicable to areas of Australia with established vectors for dengue. Commun Dis Intell 1998;22:105-107.

A case presenting diagnostic difficulties : making sense of flavivirus serology in the Top End of the Northern Territory

In early April 1998 the Centre for Disease Control (CDC) in Darwin was notified of a case with positive dengue serology. The illness appeared to have been acquired in the Northern Territory (NT). Because dengue is not endemic to the NT, locally acquired infection has significant public health implications, particularly for vector identification and control to limit the spread of infection. Dengue IgM serology was positive on two occasions but the illness was eventually presumptively identified as Kokobera infection. This case illustrates some important points about serology. The interpretation of flavivirus serology is complex and can be misleading, despite recent improvements. The best method of determining the cause of infection is still attempting to reconcile clinical illness details with incubation times and vector presence, as well as laboratory results. This approach ultimately justified the initial period of waiting for confirmatory results in this case, before the institution of public health measures necessary for a true case of dengue.

Quality of life and survival in patients treated with radical chemoradiation alone for oesophageal cancer

Aims: To report cancer-specific and health-related quality-of-life outcomes in patients undergoing radical chemoradiation (CRT) alone for oesophageal cancer. Materials and methods: Between 1998 and 2005, 56 patients with oesophageal cancer received definitive radical CRT, due to local disease extent, poor general health, or patient choice. Data from European Organization for Research and Treatment of Cancer quality-of-life questionnaires QLQ-30 and QLQ-OES24 were collected prospectively. Questionnaires were completed at diagnosis, and at 3, 6 and 12 months after CRT where applicable. Results: The median follow-up was 18 months. The median overall survival was 14 months, with a 51, 26 and 13% 1-, 3- and 5-year survival, respectively. At 12 months after treatment there was a significant improvement compared with before treatment with respect to dysphagia and pain. Global health scores were not significantly affected. Conclusions: Considering the relatively short long-term survival for this cohort of patients, maximising the quality of those final months should be very carefully borne in mind from the outset. The health-related quality-of-life data reported herein helps to establish benchmarks for larger evaluation within randomised clinical trials. © 2007 The Royal College of Radiologists.