How people construct their experience of living with secondary lymphoedema in the context of their everyday lives in Australia

Purpose The purpose of this work was to explore how men and women construct their experiences living with lymphoedema following treatment for any cancer in the context of everyday life. Methods The design and conduct of this qualitative study was guided by Charmaz’ social constructivist grounded theory. To collect data, focus groups and telephone interviews were conducted. Audiotapes were transcribed verbatim and imported into NVivo8 to organise data and codes. Data were analysed using key grounded theory principles of constant comparison, data saturation and initial, focused and theoretical coding. Results Participants were 3 men and 26 women who had developed upper- or lower-limb lymphoedema following cancer treatment. Three conceptual categories were developed during data analysis and were labelled ‘accidental journey’, ‘altered normalcy’ and ‘ebb and flow of control’. ‘Altered normalcy’ reflects the physical and psychosocial consequences of lymphoedema and its relationship to everyday life. ‘Accidental journey’ explains the participants’ experiences with the health care system, including the prevention, treatment and management of their lymphoedema. ‘Ebb and flow of control’ draws upon a range of individual and social elements that influenced the participants’ perceived control over lymphoedema. These conceptual categories were inter-related and contributed to the core category of ‘sense of self’, which describes their perceptions of their identity and roles. Conclusions Results highlight the need for greater clinical and public awareness of lymphoedema as a chronic condition requiring prevention and treatment, and one that has far-reaching effects on physical and psychosocial well-being as well as overall quality of life.

Male reproductive health disorders among Aboriginal and Torres Strait Islander men : a hidden problem?

OBJECTIVE: To better understand help-seeking behaviours and reproductive health disorders among Aboriginal and Torres Strait Islander men. DESIGN, SETTING AND PARTICIPANTS: A cross-sectional mixed-methods study conducted from 1 May 2004 to 30 April 2005 of 293 Aboriginal and Torres Strait Islander men aged 18 years and over from urban, rural and remote communities in the Northern Territory and Queensland. MAIN OUTCOME MEASURES: Subscale of the International Index of Erectile Function, self-reported help-seeking behaviours for erectile dysfunction (ED) and prostate disease, thematic analysis of semi-structured interviews and focus groups. RESULTS: The prevalence of moderate-to-severe ED increased across age groups, from about 10% in younger men (under 35 years) to 28% in men aged 55-74 years. Moderate-to-severe ED was strongly associated with reporting a chronic condition (odds ratio [OR], 3.67) and residing in a remote area (OR, 2.94). Aboriginal and Torres Strait Islander men aged 40-59 years showed similar low levels of help-seeking behaviours compared with non-Indigenous men from a comparable population-based study. About half of the men with ED saw a doctor or received treatment for ED in each population. While prostate cancer rates were low in both studies, testing for prostate problems was less frequent in Aboriginal and Torres Strait Islander men (11.4%) than in non-Indigenous men (34.1%, P < 0.001), despite similar levels of concern about prostate cancer. Barriers to help-seeking included shame, culturally inappropriate services and lack of awareness. CONCLUSION: This study, the first to investigate reproductive health of Aboriginal and Torres Strait Islander men, found low levels of help-seeking behaviours for reproductive health disorders, with implications for missing a predictor of chronic disease and late diagnosis of prostate disease.

Application of a theoretical framework to foster a cardiac-diabetes self-management programme

AIM: This paper analyses and illustrates the application of Bandura's self-efficacy construct to an innovative self-management programme for patients with both type 2 diabetes and coronary heart disease. BACKGROUND: Using theory as a framework for any health intervention provides a solid and valid foundation for aspects of planning and delivering such an intervention; however, it is reported that many health behaviour intervention programmes are not based upon theory and are consequently limited in their applicability to different populations. The cardiac-diabetes self-management programme has been specifically developed for patients with dual conditions with the strategies for delivering the programme based upon Bandura's self-efficacy theory. This patient group is at greater risk of negative health outcomes than that with a single chronic condition and therefore requires appropriate intervention programmes with solid theoretical foundations that can address the complexity of care required. SOURCES OF EVIDENCE: The cardiac-diabetes self-management programme has been developed incorporating theory, evidence and practical strategies. DISCUSSION: This paper provides explicit knowledge of the theoretical basis and components of a cardiac-diabetes self-management programme. Such detail enhances the ability to replicate or adopt the intervention in similar or differing populations and/or cultural contexts as it provides in-depth understanding of each element within the intervention. CONCLUSION: Knowledge of the concepts alone is not sufficient to deliver a successful health programme. Supporting patients to master skills of self-care is essential in order for patients to successfully manage two complex, chronic illnesses. IMPLICATIONS FOR NURSING PRACTICE OR HEALTH POLICY: Valuable information has been provided to close the theory-practice gap for more consistent health outcomes, engaging with patients for promoting holistic care within organizational and cultural contexts.

The presence of executive deficits in patients with Obstructive Sleep Apnoea

Obstructive sleep apnoea (OSA) is a chronic condition in which the upper airways collapse repeatedly during sleep, completely or partially obstructing breathing. This obstruction leads to chronic intermittent hypoxia and severe sleep fragmentation, disrupting the restorative functions of sleep. Beebe and Gozal (2002)a developed a theory which hypothesises that disruption of the restorative functions of sleep lead to a chronic low level brain damage most evident in executive functions (EF). Neuropsychological testing of EF, volumetric MRI, magnetic resonance spectroscopy, event related potentials and CSF biomarkers all provide support for this theory. Little research has been done to explore the nature of the subjective complaint and it’s impact on the activities of daily living.

Why do Queenslanders seek care in emergency departments? A population study

Objective This study aims to identify the main reasons for which first time and multiple users seek medical care through Queensland emergency departments (ED). Methods A cross-sectional survey was conducted at eight public EDs among presenting patients (n = 911). The questions measured the socio-demographic characteristics of patients, their beliefs and attitudes towards EDs services, and perceptions of health status. Bivariate and binary logistic regression analyses were performed to examine the differences between first time and multiple users of EDs. Results First time and multiple users accounted for 55.5% and 44.5%, respectively. Multiple users themselves believed to be sicker, have poorer health status, and additional and/or chronic health conditions. Multiple users more strongly believed that their condition required treatment at an ED and perceived their condition as being very serious. Multiple users reported weekly household incomes below $600, and half of the multiple users were not working as compared to 35% first time users. Multivariate analysis showed that multiple use was significantly associated with the existence of additional health problems, having chronic condition, lower self-efficacy, and need for ED treatment. Conclusions Patients who sought care for multiple times at EDs more often than first time users suffered from additional and chronic conditions. Their opinion of an ED as the most suitable place to address their current health problem was stronger than first time users. Any proposed demand management strategies need to address these beliefs together with the reasoning of patients to provide effective and appropriate care outside or within ED services.

Australian patients using a cardiac-diabetes web-based intervention program: Contributions to person-centered clinical practice

Rationale, aims and objectives: Patients with both cardiac disease and diabetes have poorer health outcomes than patients with only one chronic condition. While evidence indicates that internet based interventions may improve health outcomes for patients with a chronic disease, there is no literature on internet programs specific to cardiac patients with comorbid diabetes. Therefore this study aimed to develop a specific web-based program, then to explore patients’ perspectives on the usefulness of a new program. Methods: The interpretive approach using semi-structured interviews on a purposive sample of eligible patients with type 2 diabetes and a cardiac condition in a metropolitan hospital in Brisbane, Australia. Thematic analysis was undertaken to describe the perceived usefulness of a newly developed Heart2heart webpage. Results: Themes identified included confidence in hospital health professionals and reliance on doctors to manage conditions. Patients found the webpage useful for managing their conditions at home. Conclusions: The new Heart2heart webpage provided a positive and useful resource. Further research on to determine the potential influence of this resource on patients’ self-management behaviours is paramount. Implications for practice include using multimedia strategies for providing information to patients’ comorbidities of cardiac disease and type 2 diabetes, and further development on enhancement of such strategies

The quality of diabetes care in the community: practice, policy and culture

Aim: Diabetes is an important barometer of health system performance. This chronic condition is a source of significant morbidity, premature mortality and a major contributor to health care costs. There is an increasing focus internationally, and more recently nationally, on system, practice and professional-level initiatives to promote the quality of care. The aim of this thesis was to investigate the ‘quality chasm’ around the organisation and delivery of diabetes care in general practice, to explore GPs’ attitudes to engaging in quality improvement activities and to examine efforts to improve the quality of diabetes care in Ireland from practice to policy. Methods: Quantitative and qualitative methods were used. As part of a mixed methods sequential design, a postal survey of 600 GPs was conducted to assess the organization of care. This was followed by an in-depth qualitative study using semi-structured interviews with a purposive sample of 31 GPs from urban and rural areas. The qualitative methodology was also used to examine GPs’ attitudes to engaging in quality improvement. Data were analysed using a Framework approach. A 2nd observation study was used to assess the quality of care in 63 practices with a special interest in diabetes. Data on 3010 adults with Type 2 diabetes from 3 primary care initiatives were analysed and the results were benchmarked against national guidelines and standards of care in the UK. The final study was an instrumental case study of policy formulation. Semi-structured interviews were conducted with 15 members of the Expert Advisory Group (EAG) for Diabetes. Thematic analysis was applied to the data using 3 theories of the policy process as analytical tools. Results: The survey response rate was 44% (n=262). Results suggested care delivery was largely unstructured; 45% of GPs had a diabetes register (n=157), 53% reported using guidelines (n=140), 30% had formal call recall system (n=78) and 24% had none of these organizational features (n=62). Only 10% of GPs had a formal shared protocol with the local hospital specialist diabetes team (n=26). The lack of coordination between settings was identified as a major barrier to providing optimal care leading to waiting times, overburdened hospitals and avoidable duplication. The lack of remuneration for chronic disease management had a ripple effect also creating costs for patients and apathy among GPs. There was also a sense of inertia around quality improvement activities particularly at a national level. This attitude was strongly influenced by previous experiences of change in the health system. In contrast GP’s spoke positively about change at a local level which was facilitated by a practice ethos, leadership and special interest in diabetes. The 2nd quantitative study found that practices with a special interest in diabetes achieved a standard of care comparable to the UK in terms of the recording of clinical processes of care and the achievement of clinical targets; 35% of patients reached the HbA1c target of <6.5% compared to 26% in England and Wales. With regard to diabetes policy formulation, the evolving process of action and inaction was best described by the Multiple Streams Theory. Within the EAG, the formulation of recommendations was facilitated by overarching agreement on the “obvious” priorities while the details of proposals were influenced by personal preferences and local capacity. In contrast the national decision-making process was protracted and ambiguous. The lack of impetus from senior management coupled with the lack of power conferred on the EAG impeded progress. Conclusions: The findings highlight the inconsistency of diabetes care in Ireland. The main barriers to optimal diabetes management center on the organization and coordination of care at the systems level with consequences for practice, providers and patients. Quality improvement initiatives need to stimulate a sense of ownership and interest among frontline service providers to address the local sense of inertia to national change. To date quality improvement in diabetes care has been largely dependent the “special interest” of professionals. The challenge for the Irish health system is to embed this activity as part of routine practice, professional responsibility and the underlying health care culture.

Physical function, psychosocial adaptation, and hardiness post stroke

Introduction: Stroke is a chronic condition that significantly impacts on morbidity and mortality (Balanda et al. 2010). Globally, the complexity of stroke is well documented and more recently, in Ireland, as part of the National Survey of Stroke Survivors (Horgan et al. 2014). There are a number of factors that are known to influence adaptation post stroke. However, there is a lack of research to explain the variability in how survivors adapt post stroke. Hardiness is a broad personality trait that leads to better outcome. This study investigated the influence of hardiness and physical function on psychosocial adaptation post stroke. Methods: A quantitative cross-sectional, correlational, exploratory study was conducted between April and November 2013. The sample consisted of stroke survivors (n=100) who were recruited from three hospital outpatient departments and completed a questionnaire package. Results: The mean age of participants was 76 years (range 70-80), over half (56%) of the participants achieved the maximum score of 20 on the Barthel Index indicating independence in activities of daily living. The median number of days since stroke onset was 91 days (range 74-128). The total mean score and standard deviation for hardiness was 1.89 (0.4) as measured by the Dispositional Resilience Scale, indicating medium hardiness (possible range 0-3). Psychosocial adaptation was measured using the Psychosocial Adjustment to Illness Scale, the total weighted mean and standard deviation was 0.54 (0.3) indicating a satisfactory level of psychosocial adaptation (possible range 0-3). A hierarchical multiple linear regression was performed which contained 6 independent variables (hardiness, living arrangement, and length of hospital stay, number of days since stroke onset, physical function and self-rated recovery). Findings demonstrated that physical function (p<0.001) and hardiness (p=0.008) were significantly related to psychosocial adaptation. Altogether, 65% of the variation in psychosocial adaptation can be explained by the combined effect of the independent variables. Physical functioning had the highest unique contribution (11%) to explain the variance in psychosocial adaptation while self-rated recovery, hardiness, and living arrangements contributed 3% each. Conclusion: This research provides important information regarding factors that influence psychosocial adaptation post stroke at 3 months. Physical function significantly contributed to psychosocial adaptation post stroke. The personality trait of hardiness provides insight into how behaviour influenced adaptation post stroke. While hardiness also had a strong relationship with psychosocial adaptation, further research is necessary to fully comprehend this process.

'Lipoproteins, glycoxidation and diabetic angiopathy'

The chronic vascular complications of diabetes (nephropathy, retinopathy and accelerated atherosclerosis) are a major cause of morbidity and premature mortality. In spite of the more widespread availability of intensive diabetes management, approximately one in three people with diabetes develop aggressive complications and over 70% die of atherosclerosis-related diseases. Genetic and acquired factors are likely to be contributory. Potential mediators of vascular damage may include the interrelated processes of lipoprotein abnormalities, glycation, oxidation and endothelial dysfunction. Lipoprotein abnormalities encompass alterations in lipid concentrations, lipoprotein composition and subclass distribution and lipoprotein-related enzymes. Nonenzymatic glycation and oxidative damage to lipoproteins, other proteins and to vascular structures may also be deleterious. As atherosclerosis is a chronic condition commencing in youth, and because clinical events may be silent in diabetes, surrogate measures of vascular disease are important for early identification of diabetic patients with or at high risk of vascular damage, and for monitoring efficacy of interventions. The increasing array of biochemical assays for markers and mediators of vascular damage, noninvasive measures of vascular health, and therapeutic options should enable a reduction in the excessive personal and economic burden of vascular disease in type 1 and type 2 diabetes.

Creating an eLearning Resource to Improve Knowledge and Understanding of Pregnancy in the Context of HIV Infection

Patient narratives have much to teach healthcare professionals about the experience of living with a chronic condition. While the biomedical narrative of HIV treatment is hugely encouraging, the narrative of living with HIV continues to be overshadowed by a persuasive perception of stigma. This paper presents how we sought to translate the evidence from a qualitative study of the perspectives of HIV affected pregnant women and expectant fathers on the care they received, from the pre conception to post natal period, into educational material for maternity care practice. Narrative scripts were written based on the original research interviews, with care taken to reflect the key themes from the research. We explore the way in which the qualitative findings bring to life patient and partner experiences and what it means for nurses, midwives and doctors to be prepared to care for couples affected by HIV. In so doing, we challenge the inequity between the dominance of biomedical knowledge over understanding the patient experience in the preparation of health professionals to care for HIV affected women and men who are having a baby or seeking to have a baby.

Empathy in UK pharmacy students: assessing differences by gender, level in the degree programme, part-time employment and medical status

Background: Empathy is an important aspect of patient–healthcare professional interactions.Aims: To investigate whether gender, level in the degree programme, employment and health status affected empathy scores of undergraduate pharmacy students.Method: All undergraduate pharmacy students (n=529) at Queen’s University Belfast were invited via email to completean online validated empathy questionnaire. Empathy scores were calculated and non-parametric tests used to determine associations between factors.Results: Response rate was 60.1% (318/529) and the mean empathy score was 106.19. Scores can range from 20 to 140,with higher scores representing a greater degree of empathy. There was no significant difference between genders (p=0.211). There was a significant difference in scores across the four levels of the programme (p<0.001); scores were lowest at Level 1 and greatest at Level 4 (final year). There were no significant differences in scores for respondents who had a part-time job, a chronic condition, or took regular medication in comparison to those who did not (p=0.028,p=0.880, p=0.456, respectively).Conclusion: A reasonable level of empathy was found relative to other studies; this could be further enhanced at lower levels of the degree pathway.

Working with physical therapists to develop and evaluate an evidence-based online module for Developmental Coordination Disorder (DCD): bridging the knowledge-to-practice gap

Aims: Developmental Coordination Disorder (DCD) is a chronic condition with potential negative health consequences. Clinicians working with children with DCD need access to tailored, synthesized, evidence-based DCD information; however a knowledge-to-practice gap exists. The aim of this study was to develop and evaluate an evidence-based online DCD module tailored to physical therapists’ (PTs) identified needs. Methods: Guided by the Knowledge to Action framework, we interviewed PTs working with children with DCD (n=9) to identify their information needs. Their recommendations, along with synthesized DCD research evidence, informed module development. PTs (n=50) responded to scaled items and open-ended questions to evaluate module usefulness. Results: The module incorporated important PT DCD content areas including: 1) Identification; 2) Planning Interventions and Goals; 3) Evidence-Based Practice; 4) Management; and, 5) Resources. Case scenarios, clinical applications, interactive media, links to resources, and interactive learning opportunities were also embedded. PTs perceived the module to be comprehensive and useful and provided feedback to improve module navigation. Conclusions: Involving end-users throughout the development and evaluation of an online PT DCD module contributed to its relevance, applicability, and utility. The ongoing clinical use of this module may have the potential to improve the quality of PT DCD services.

Current standards and progress in understanding and treatment of GIST.

Gastrointestinal stromal tumours (GIST), despite being rare, pose a relevant medical problem from the viewpoint of diagnosis and management. GIST are fragile, liable to metastasize and often located in delicate structures. Surgical options, therefore, are limited. In the last decade an improved understanding of the molecular mechanisms of the disease has resulted in novel modes of treatment. The introduction of systemic tyrosine kinase inhibitor therapy with imatinib has significantly improved the outcome of the disease and prolonged the survival of GIST patients. For many patients the acute threat of a deadly cancer has been transformed into a manageable chronic condition. Drug safety, tolerability and compliance, subjects of concern in all long-term therapies, have proven to be acceptable for the tyrosine kinase inhibitor imatinib. The present paper provides a compact overview of the epidemiology, pathophysiology and morphology of GIST, with special reference to the underlying molecular biology. Relevant aspects of diagnosis, therapy and monitoring of the disease are reviewed with particular emphasis on the available clinical evidence and recent guidelines.

Is Internet use unhealthy? A cross-sectional study of adolescent Internet overuse.

OBJECTIVE: To assess whether problematic internet use is associated with somatic complaints and whether this association remains when checking for internet activity among a random sample of adolescents living in the canton of Vaud, Switzerland. METHODS: Cross-sectional survey of 3,067 8th graders (50.3% females) divided into average (n = 2,708) and problematic (n = 359) Internet users and compared for somatic complaints (backache, overweight, headaches, musculoskeletal pain, sleep problems and sight problems) controlling for sociodemographic and internet-related variables. Logistic regressions were performed for each complaint and for all of them simultaneously controlling variables significant at the bivariate level. RESULTS: At the multivariate level, when taken separately, problematic internet users were more likely to have a chronic condition (adjusted odds ratio [aOR] with 95% CI: 1.58 [1.11:2.23]) and to report back pain (aOR: 1.46 [1.04:2.05]), overweight (aOR: 1.74 [1.03:2.93]), musculoskeletal pain (aOR: 1.36 [1.00:1.84]) and sleep problems (aOR: 2.16 [1.62:2.88]). When considered in the full model, only sleep problems remained significant (aOR: 2.03 [1.50:2.74]). CONCLUSIONS: Our results confirm that problematic internet users report health problems more frequently, with lack of sleep being the most strongly associated and seeming to act as mediator regarding the other ones. Clinicians should remember to screen for excessive internet use their patients complaining of sleep-related problems, back or musculoskeletal pain or overweight. Clinicians should advise parents to limit the amount of time their adolescent children can spend online for leisure activities. Furthermore, limiting the number of devices used to connect to the internet could help warrant enough sleeping time.

The meaning of multiple medication use in adults: A qualitative study

Over half of prescribed medications are not taken as prescribed, resulting in health and economic consequences. Using constructivist grounded theory, 15 interviews were conducted to develop a theory on understanding the medication adherence choices of individuals, who were between the ages of 40 to 55, were diagnosed with a chronic condition, and taking three or more medications. The results indicate that participants are engaging in self-management strategies, with massive variance in adherence behaviours. Medications are sacrificed for personal and financial reasons, resonating with feelings of fear for the person’s current situation and future. Individuals are struggling with who they have become to who they once were, which becomes related to their medications. Finally, individuals are citing the impact of their physician; citing barriers to communication and Canada’s health care system. Participants’ experiences provided an understanding of the meanings individuals associate with their medications and how this impacts their decision-making.