The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study

Purpose: To explore the experiences, views and beliefs of people with severe haemophilia and healthcare professionals (HCPs) on approaches for pain management, as well as their views on exercise being used as an aspect of management. Methods: Taking a qualitative inquiry approach using focus groups and semi-structured interviews, participants included people with severe haemophilia living with chronic pain and haemophilia HCPs. Data were analysed using reflexive thematic analysis. Results: Fourteen men with haemophilia with a median age of 47 (range 23–73) and six haemophilia HCPs agreed to participate. Of the people with haemophilia, 11 attended two focus groups and three were interviewed over telephone. Healthcare professionals were interviewed face-to-face. Two themes were conceptualised from the data: (i) haemophilia management and pain management is discordant (imbalance between good haemophilia care but poor pain management, historical medico-social influences on pain management, the need for trust); (ii) uncertain about exercise but clear on what matters (conflicting views on exercise, the need for proof of safety, personalised care). Conclusions: Options for effective pain management remain limited and what is used is heavily influenced by beliefs and experience. Exercise as a treatment option in pain management is conceptually acceptable for people with haemophilia. Effective pain management requires understanding of individual beliefs and fears, and a personalised approach supported by knowledgeable, trusted clinicians

Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness

<b>Background</b> In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding - and sometimes preventing - disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment.<p></p> <b>Discussion</b> As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization.<p></p> <b>Summary</b> Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts

Promoting a Lay Led Self-Care Approach to Managing Persistent Pain.

This research project explored the impact of introducing a lay led self-management approach known as the Expert Patient Programme (EPP) at patients' initial referral stage to a pain management clinic in a secondary care setting. It involved a randomised controlled trial and employed a mixed method approach permitting triangulation of data with a longitudinal design. Sixty-three patients (Control group n=33, Intervention group n=30) with persistent non-malignant musculo-skeletal pain conditions referred to a District General Hospital (DGH) Pain Clinic , agreed to take part and provided data for the research. The intervention was usual care and an invitation to attend a lay led self-management programme known as the Expert Patients Programme (EPP). This consisted of six 2 hour per week programmes led by lay tutors. The Control group received only usual care, data being collected at baseline, 3-6 months and 10-14 months. The primary hypothesis was to determine if the early introduction of a selfmanagement approach alongside medical treatments could influence and encourage participants to adopt self-management approaches to managing their persistent pain. The primary outcome, readiness to take action to self-manage persistent pain symptoms was measured by the Pain Stages of Change Questionnaire (PSOCQ). Secondary outcomes of Acceptance, Pain and Interference were measured by applying the Chronic Pain Acceptance Questionnaire (CPAQ), and Brief Pain Inventory (BPI). The Qualitative data was gathered using focus groups. The results identified significant promotion through the Stages of Change process accompanied by improvements in Pain and Interference levels for the Intervention groups' data at 10-14 months; no significant changes were found in the Control group. Improvements in the Intervention group were related to a synergistic effect of offering a self-management approach in parallel with a medical model approach and participants taking actions to relinquish their Sick Role. This study is the first to suggest an association between the Stages of Change process and the Sick Role. Results provide evidence that improvements seen in the Intervention group were associated with progress through the Stages of Change and linked with participants adopting self-management approaches and relinquishing their Sick Role; this allowed them to take on a more appropriate role described as the Persistent Condition Role (PCR)

Monitoring and Market Power in Loan Markets

Whether or not banks are engaged in ex ante monitoring of customers may have important consequences for the whole economy. We approach this question via a model in which banks can invest in either information acquisition or market power (product differentiation). The two alternatives generate different predictions, which are tested using panel data on Finnish local banks. We find evidence that banks’ investments in branch networks and human capital (personnel) contribute to information acquisition but not to market power. We also find that managing customers’ money transactions enhances banks ability to control their lending risks.banks; information acquisition; market power; fixed costs; branch network; default costs

Managing recurrent vulvovaginal thrush from patient and healthcare professional perspectives: a systematic review and thematic synthesis

Objective: This systematic review aims to identify what is known about patient and healthcare professional experiences of managing recurrent vulvovaginal thrush by synthesising published findings. Methods: Five databases were searched for studies on patient and healthcare professional experiences managing recurrent thrush. Two reviewers independently screened and quality assessed qualitative, quantitative, and mixed-methods studies. Findings from eligible studies were thematically synthesised. Results: 720 papers were identified, and 29 were included. Four descriptive themes were developed to depict the repeated management of recurrent thrush. These themes were: (re)experiencing impacts, (re)identifying recurrent thrush, (re)considering consultations, and (re)trying treatments. An analytic high-order frame of ‘interwoven and reoccurring uncertainties’ was used to understand these themes. Conclusions: Patients and healthcare providers face uncertainties when managing recurrent thrush. The inconsistencies raised across papers suggests an unaddressed gap in knowledge about patient experiences and their informational and support needs; this includes insights about this condition’s diagnosis, management, treatment, impacts, and meaning. Practice implications: This review has implications for patient education, health promotion, and communication between patients and providers. Our interpretations suggest the need for more research and resources to help support patients and clinicians in managing this condition to promote more understanding, communication, and collaborative care

Elevating commodity storage with the SALSA host translation layer

To satisfy increasing storage demands in both capacity and performance, industry has turned to multiple storage technologies, including Flash SSDs and SMR disks. These devices employ a translation layer that conceals the idiosyncrasies of their mediums and enables random access. Device translation layers are, however, inherently constrained: resources on the drive are scarce, they cannot be adapted to application requirements, and lack visibility across multiple devices. As a result, performance and durability of many storage devices is severely degraded. In this paper, we present SALSA: a translation layer that executes on the host and allows unmodified applications to better utilize commodity storage. SALSA supports a wide range of single- and multi-device optimizations and, because is implemented in software, can adapt to specific workloads. We describe SALSA's design, and demonstrate its significant benefits using microbenchmarks and case studies based on three applications: MySQL, the Swift object store, and a video server.Comment: Presented at 2018 IEEE 26th International Symposium on Modeling, Analysis, and Simulation of Computer and Telecommunication Systems (MASCOTS

Support needs of patients with COPD: a systematic literature search and narrative review

Introduction: Understanding the breadth of patients’ support needs is important for the delivery of person-centered care, particularly in progressive long-term conditions such as chronic obstructive pulmonary disease (COPD). Existing reviews identify important aspects of managing life with COPD with which patients may need support (support needs); however, none of these comprehensively outlines the full range of support needs that patients can experience. We therefore sought to systematically determine the full range of support needs for patients with COPD to inform development of an evidence-based tool to enable person-centered care. Methods: We conducted a systematic search and narrative review of the literature. Medline (Ovid), EMBASE, PsycINFO, Cochrane Library, and CINAHL were systematically searched for papers which included data addressing key aspects of support need, as identified by patients with COPD. Relevant data were extracted, and a narrative analysis was conducted. Results: Thirty-one papers were included in the review, and the following 13 domains (broad areas) of support need were identified: 1) understanding COPD, 2) managing symptoms and medication, 3) healthy lifestyle, 4) managing feelings and worries, 5) living positively with COPD, 6) thinking about the future, 7) anxiety and depression, 8) practical support, 9) finance work and housing, 10) families and close relationships, 11) social and recreational life, 12) independence, and 13) navigating services. These 13 domains of support need were mapped to three of the four overarching categories of need commonly used in relevant national strategy documents (ie, physical, psychological, and social); however, support needs related to the fourth category (spiritual) were notably absent. Conclusion: This review systematically identifies the comprehensive set of domains of support need for patients with COPD. The findings provide the evidence base for a tool to help patients identify and express their support needs, which underpins a proposed intervention to enable the delivery of person-centered care: the Support Needs Approach for Patients (SNAP)

The Long-Term Multidimensional Impact of Persistent Multisite Pain on Physical and Psychological Disability, and Mortality in Community-Dwelling Older Adults

Persistent multisite pain is highly prevalent, affecting 25-43% of community-dwelling older adults. Although existing evidence suggests that persistent multisite pain is associated with physical and psychological disability, studies use a cross-sectional assessment approach that overlooks pain duration or persistence. This study aimed to estimate the persistence of multisite pain and the proportion of incident multisite pain and examine the association between persistent multisite pain and physical (ADL and IADL) and psychological disability (depression and anxiety) at 18 months and six years. Also, the association between baseline persistent multisite pain and mortality was assessed. Secondary data analysis of the MOBILIZE Boston Study (MBS) was performed using data from baseline, 18 months, and six years. Pain distribution assessed longitudinally at three-time points were categorized as no pain, single-site pain, incident multisite pain, and persistent multisite pain. Chi-square analysis, ANOVA tests, and several multivariable regression models were employed. The prevalence of persistent multisite pain was 26% and 27%, and incident multisite pain was 10% and 18% at 18 months and six years, respectively. For individuals with incident multisite pain, the risk for ADL difficulty became evident only at six years, but individuals with persistent multisite pain consistently had a much higher risk for ADL difficulty at 18 months and six years. There is a substantial increase in the risk for a lot of IADL difficulty in individuals with incident or persistent multisite pain compared to individuals with no pain. Incident multisite pain was not associated with depression and anxiety at six years, while persistent multisite pain was associated with psychological disability at 18 months and six years. Essentially, persistent multisite pain is more debilitating than incident multisite pain. There was no association between persistent multisite pain and mortality at 12.4 years. This study\u27s findings contribute to geriatric pain research by revealing the disabling consequences of the persistence of multisite pain. Proper utilization of multisite pain measures and assessment of the functional capacity is crucial when evaluating elders with multisite pain. Importantly, clinicians need to be aware of depression and anxiety when treating the elderly with multisite pain

Identity boxes: using materials and metaphors to elicit experiences

This paper considers the use of identity boxes as a data collection method to elicit experiences. Participants were asked to respond to questions using objects to represent their answers. The rationale for using identity boxes was to allow for a more embodied, less textual approach. The identity boxes were then also used to create an artistic installation as one form of data analysis. The reflection section in this paper shows that the approach posed potential risks around the emotional vulnerability of participants, with participants experiencing the project as cathartic and therapeutic. Some participants struggled with the process of thinking through objects as difficult. Although using a less conventional approach to research led to deeper, richer reflections and thus relevant, interesting data, concerns were raised around relevance, generalisability, and more generally the evaluation of the research. The paper concludes with a reconsideration of the identity boxes as a method