Cancer related fatigue and self-care while undergoing chemotherapy: patients' perspectives

Background: Cancer related fatigue (CRF) is considered the most severe, debilitating and under-managed symptom of cancer. Patients receiving chemotherapy experience high levels of CRF which profoundly impacts on their lives. Aim: 1). To explore and measure CRF and determine the most effective self-care strategies used to combat CRF in a cohort of patients with a diagnosis of cancer (breast cancer, colorectal cancer, Hodgkin’s and Non-Hodgkin’s lymphoma) 2). To explore self-care agency and its relationship to CRF. Method: A mixed methods study which incorporated a descriptive, comparative, correlational design and qualitative descriptions of patients’ (n=362) experiences gleaned through open ended questions and use of a diary. The study utilised The Revised Pipers Fatigue Scale, the Appraisal of Self-Care Agency and a researcher developed Fatigue Visual Analogue Scale, Fatigue Self-Care Survey, and Diary. Findings: Having breast cancer, Hodgkin’s lymphoma, non-Hodgkin’s lymphoma; using the strategies of counselling, taking a 20–30 minute nap, resting and sleeping, self-monitoring and complementary therapies were all associated with increased odds of developing fatigue. Increased self-care agency; being in the divorced / separated cohort; being widowed; increased length of time since commencement of chemotherapy; engagement in exercise, and socializing were associated with a reduced risk of developing fatigue. Females had 20% higher fatigue levels than males (p=<.001). Receiving support was the strategy used most frequently and rated most effective. Fatigue was very problematic and distressing, four key qualitative categories emerged: the behavioural impact, affective impact, the sensory impact, and the cognitive impact. Keeping a diary was considered very beneficial and cathartic. Conclusions: Fatigue severely impacted on the daily lives of patients undergoing chemotherapy. There are a range of self-care strategies that patients should be encouraged to use e.g. exercise, socializing, and enhancement of psychological well-being. The enhancement of self-care agency and use of diaries should also be considered.

Self-neglect: a case study and implications for clinical practice

Self-neglect is a worldwide and serious public health issue that can have serious adverse outcomes and is more common in older people. Cases can vary in presentation but typically present as poor self-care, poor care of the environment and service refusal. Community nurses frequently encounter self-neglect cases and health and social care professionals play a key role in the identification, management and prevention of self-neglect. Self-neglect cases can give rise to ethical, personal and professional challenges. The aim of this article is to create a greater understanding of the concept of self-neglect among community nurses.

Context-aware real-time assistant architecture for pervasive healthcare

The aging population in many countries brings into focus rising healthcare costs and pressure on conventional healthcare services. Pervasive healthcare has emerged as a viable solution capable of providing a technology-driven approach to alleviate such problems by allowing healthcare to move from the hospital-centred care to self-care, mobile care, and at-home care. The state-of-the-art studies in this field, however, lack a systematic approach for providing comprehensive pervasive healthcare solutions from data collection to data interpretation and from data analysis to data delivery. In this thesis we introduce a Context-aware Real-time Assistant (CARA) architecture that integrates novel approaches with state-of-the-art technology solutions to provide a full-scale pervasive healthcare solution with the emphasis on context awareness to help maintaining the well-being of elderly people. CARA collects information about and around the individual in a home environment, and enables accurately recognition and continuously monitoring activities of daily living. It employs an innovative reasoning engine to provide accurate real-time interpretation of the context and current situation assessment. Being mindful of the use of the system for sensitive personal applications, CARA includes several mechanisms to make the sophisticated intelligent components as transparent and accountable as possible, it also includes a novel cloud-based component for more effective data analysis. To deliver the automated real-time services, CARA supports interactive video and medical sensor based remote consultation. Our proposal has been validated in three application domains that are rich in pervasive contexts and real-time scenarios: (i) Mobile-based Activity Recognition, (ii) Intelligent Healthcare Decision Support Systems and (iii) Home-based Remote Monitoring Systems.

Self-neglect: development and evaluation of a self-neglect (SN-37) measurement instrument

Aim: To develop and evaluate the psychometric properties of an instrument for the measurement of self-neglect (SN).Conceptual Framework: An elder self-neglect (ESN) conceptual framework guided the literature review and scale development. The framework has two key dimensions physical/psycho-social and environmental and seven sub dimensions which are representative of the factors that can contribute to intentional and unintentional SN. Methods: A descriptive cross-sectional design was adopted to achieve the research aim. The study was conducted in two phases. Phase 1 involved the development of the questionnaire content and structure. Phase 2 focused on establishing the psychometric properties of the instrument. Content validity was established by a panel of 8 experts and piloted with 9 health and social care professionals. The instrument was subsequently posted with a stamped addressed envelope to 566 health and social care professionals who met specific eligibility criteria across the four HSE areas. A total of 341 questionnaires were returned, a response rate of 60% and 305 (50%) completed responses were included in exploratory factor analysis (EFA). Item and factor analyses were performed to elicit the instruments underlying factor structure and establish preliminary construct validity. Findings: Item and factor analyses resulted in a logically coherent, 37 items, five factor solution, explaining 55.6% of the cumulative variance. The factors were labelled: ‘Environment’, ‘Social Networks’, ‘Emotional and Behavioural Liability’, ‘Health Avoidance’ and ‘Self-Determinism’. The factor loadings were >0.40 for all items on each of the five subscales. Preliminary construct validity was supported by findings. Conclusion: The main outcome of this research is a 37 item Self-Neglect (SN-37) measurement instrument that was developed by EFA and underpinned by an ESN conceptual framework. Preliminary psychometric evaluation of the instrument is promising. Future work should be directed at establishing the construct and criterion related validity of the instrument.

Health care and neoliberalism in Ireland: withholding the gift and corrupting the social contract

The health of a nation tells much about the nature of a social contract between citizen and state. The way that health care is organised, and the degree to which it is equitably accessible, constitutes a manifestation of the effects of moments and events in that country's history. Using four case studies, this thesis uses a historical genealogical approach to explain the evolution of Ireland's particular version of health care provision. The total social fact of the gift relationship, central to all human relations, will be used to form a theoretical and conceptual framework on which to build an analysis of Ireland's health and welfare conditions. Additionally, social contract theory will enable an examination of the role of solidarity in relation to social expectations around health care provision. Through the analysis of these cases, the complex matrix of the influential forces that have shaped current conditions are exposed and revealed, enabling a critical understanding of the extent of acquiescence to the inequitable system that arguably exists. The vulnerability of citizens in need of care to the external and global effects of market forces and neoliberalism, therefore, becomes central to any argument for state-provided health and welfare. The hegemony of such forces can be seen to influence the manner in which the idea of individual self-reliance, in place of collective solidarity, is conceptualised and subsequently infiltrated into a range of aspects of the social world. For example, the particular discourse of the market and of economic concerns succeeds in shaping understandings of responsibilities around central areas of health and welfare. Similarly the 'possessor principle' can be seen to be misplaced within the context of health and social care, but yet has become normalised within this discourse. Within this matrix of complex influencing factors, the welfare state struggles to impose a balance between market values and social values. Responsibilities of the state to support and compensate its citizens for the ills of the market have become devalued, as the core values of classical liberalism have become distorted beyond recognition, leaving instead bare neoliberal concerns. This thesis traces the genealogical origins of this transition within the recent history of Irish health care and thereby reveals the embedding of individualism in place of solidarity, the on going reneging of the social contract and the corruption of the gift relationship.

Self-management education for cystic fibrosis

Background: Self-management education may help patients with cystic fibrosis and their families to choose, monitor and adjust treatment requirements for their illness, and also to manage the effects of illness on their lives. Although self-management education interventions have been developed for cystic fibrosis, no previous systematic review of the evidence of effectiveness of these interventions has been conducted. Objectives: To assess the effects of self-management education interventions on improving health outcomes for patients with cystic fibrosis and their caregivers. Search methods: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Trials Register (date of the last search: 22 August 2013). We also searched databases through EBSCO (CINAHL; Psychological and Behavioural Sciences Collection; PsychInfo; SocINDEX) and Elsevier (Embase) and handsearched relevant journals and conference proceedings (date of the last searches: 01 February 2014 ). Selection criteria: Randomised controlled trials, quasi-randomised controlled trials or controlled clinical trials comparing different types of self-management education for cystic fibrosis or comparing self-management education with standard care or no intervention. Data collection and analysis: Two authors assessed trial eligibility and risk of bias. Three authors extracted data. Main results: Four trials (involving a total of 269 participants) were included. The participants were children with cystic fibrosis and their parents or caregivers in three trials and adults with cystic fibrosis in one trial. The trials compared four different self-management education interventions versus standard treatment: (1) a training programme for managing cystic fibrosis in general; (2) education specific to aerosol and airway clearance treatments; (3) disease-specific nutrition education; and (4) general and disease-specific nutrition education. Training children to manage cystic fibrosis in general had no statistically significant effects on weight after six to eight weeks, mean difference -7.74 lb (i.e. 3.51 kg) (95% confidence interval -35.18 to 19.70). General and disease-specific nutrition education for adults had no statistically significant effects on: pulmonary function (forced expiratory volume at one second), mean difference -5.00 % (95% confidence interval -18.10 to 8.10) at six months and mean difference -5.50 % (95% confidence interval -18.46 to 7.46) at 12 months; or weight, mean difference - 0.70 kg (95% confidence interval -6.58 to 5.18) at six months and mean difference -0.70 kg (95% confidence interval -6.62 to 5.22) at 12 months; or dietary fat intake scores, mean difference 1.60 (85% confidence interval -2.90 to 6.10) at six months and mean difference 0.20 (95% confidence interval -4.08 to 4.48) at 12 months. There is some limited evidence to suggest that self-management education may improve knowledge in patients with cystic fibrosis but not in parents or caregivers. There is also some limited evidence to suggest that self-management education may result in positively changing a small number of behaviours in both patients and caregivers. Authors' conclusions: The available evidence from this review is of insufficient quantity and quality to draw any firm conclusions about the effects of self-management education for cystic fibrosis. Further trials are needed to investigate the effects of self-management education on a range of clinical and behavioural outcomes in children, adolescents and adults with cystic fibrosis and their caregivers.