Illness identity as an important component of candidacy: Contrasting experiences of help-seeking and access to care in cancer and heart disease

How and when we use health services or healthcare provision has dominated exploration of and debates around healthcare access. Levels of utilisation are assumed as a proxy for access. Yet, focusing on utilisation conceals an important aspect of the access conundrum: the relationships that patients and potential patients have with the healthcare system and the professionals within those systems. Candidacy has been proposed as an antidote to traditional utilisation models. The Candidacy construct offers the ability to include patient-professional aspects alongside utilisation and thus promotes a deeper understanding of access. Originally applied to healthcare access for vulnerable populations, additional socio-demographic factors, including age and ethnicity, have also been shown to influence the Candidacy process. Here we propose a further extension of the Candidacy construct and illustrate the importance of illness identities when accessing healthcare. Drawing on a secondary data analysis of three data sets of qualitative interviews from colorectal cancer and heart failure patients we found that though similar access issues are apparent pre-diagnosis, diagnosis marks a critical juncture in the experience of access. Cancer patients describe a person-centred responsive healthcare system where their patienthood requires only modest assertion. Cancer speaks for itself. In marked contrast heart failure patients, describe struggling within a seemingly impermeable system to understand their illness, its implications and their own legitimacy as patients. Our work highlights the pressing need for healthcare professionals, systems and policies to promote a person centred approach, which is responsive and timely, regardless of illness category. To achieve this, attitudes regarding the importance or priority afforded to different categories of illness need to be tackled as they directly influence ideas of Candidacy and consequently access and experiences of care

How does the use of digital consulting change the meaning of being a patient and/or a health professional? Lessons from the Long-term Conditions Young People Networked Communication study

Background: While studies have examined the impact of digital communication technology on healthcare, there is little exploration of how new models of digital care change the roles and identities of the health professional and patient. The purpose of the current study is to generate multidisciplinary reflections and questions around the use of digital consulting and the way it changes the meaning of being a patient and/or a health professional. Method: We used a large pre-existing qualitative dataset from the Long-term Conditions Young People Networked Communication (LYNC) study which involved interviews with healthcare professionals and a group of 16–24 years patients with long-term physical and mental health conditions. We conducted a three-stage mixed methods analysis. First, using a small sample of interview data from the LYNC study, we identified three key themes to explore in the data and relevant academic literature. Second, in small groups we conducted secondary analysis of samples of patient and health professional LYNC interview data. Third, we ran a series of rapid evidence reviews. Findings: We identified three key themes: workload/flow, impact of increased access to healthcare and vulnerabilities. Both health professionals and patients were 'on duty' in their role more often. Increased access to healthcare introduced more responsibilities to both patients and health professionals. Traditional concepts in medical ethics, confidentiality, empathy, empowerment/power, efficiency and mutual responsibilities are reframed in the context of digital consulting. Conclusions: Our collaboration identified conflicts and constraints in the construction of digital patients and digital clinicians. There is evidence that digital technologies change the nature of a medical consultation and with it the identities and the roles of clinicians and patients which, in turn, calls for a redefinition of traditional concepts of medical ethics. Overall, digital consulting has the potential to significantly reduce costs while maintaining or improving patient care and clinical outcomes. Timely study of digital engagement in the National Health Service is a matter of critical importance

Leadership Development for the Formal Nurse Leader

Nurse leaders are essential to the advancement of healthcare because of their ability to bridge the gap of knowledge between clinical practice and the business of healthcare. Developing nurse managers is imperative to the future of nursing given their influential role in healthcare. The central topic of exploration in the project was how nurse managers use the American Organization of Nurse Executives (AONE) Nurse Manger Inventory Tool to assess their management skills after exposure to the leadership development program currently available to them. In this project, the novice to expert theory was used to evaluate the existing leadership development program at a tertiary care academic medical center with Magnet accreditation within the Midwest. Secondary data from the AONE Nurse Manager Inventory was analyzed with focus on three professional domains: the art, science and leader within. The analysis was used to identify the current program\u27s strengths and weaknesses, and make recommendations to increase education for nurse managers in the science domain; specifically in the subcategories of financial and strategic management. Enhanced educational opportunities in financial and strategic management will support the progression of nurse managers\u27 development along the continuum of novice to expert. The implications for social change from this project exist through the creation of new leadership outcome measures supporting Magnet redesignation for this facility and as an example to other organization on their journey of meeting Magnet requirements in nursing leadership development

On Regulatory and Organizational Constraints in Visualization Design and Evaluation

Problem-based visualization research provides explicit guidance toward identifying and designing for the needs of users, but absent is more concrete guidance toward factors external to a user's needs that also have implications for visualization design and evaluation. This lack of more explicit guidance can leave visualization researchers and practitioners vulnerable to unforeseen constraints beyond the user's needs that can affect the validity of evaluations, or even lead to the premature termination of a project. Here we explore two types of external constraints in depth, regulatory and organizational constraints, and describe how these constraints impact visualization design and evaluation. By borrowing from techniques in software development, project management, and visualization research we recommend strategies for identifying, mitigating, and evaluating these external constraints through a design study methodology. Finally, we present an application of those recommendations in a healthcare case study. We argue that by explicitly incorporating external constraints into visualization design and evaluation, researchers and practitioners can improve the utility and validity of their visualization solution and improve the likelihood of successful collaborations with industries where external constraints are more present.Comment: 9 pages, 2 figures, presented at BELIV workshop associated with IEEE VIS 201

Parents’ views on preparation to care for extremely premature infants at home.

Aim: To gain insight into the post-discharge experiences of parents in relation to the adequacy of preparation for caring for their extremely premature infant at home. Method: A narrative approach was drawn on to facilitate data collection, via face-to-face semi-structured interviews, with fourteen parents of extremely premature infants. Findings: Constant comparative analysis was employed to allow the emergence of five key research themes: Emotional and mental health of parents; uncertain outcomes; on-going health needs of the baby; education needs of health professionals; parental support and preparation for transition home. Conclusion: Parental experience of being discharged home with a premature baby can be emotionally challenging necessitating a range of support mechanisms to assist them to cope with this period of transition

MacArthur Foundation's Initiative to Promote Midwifery in Mexico, Complete Baseline Report

This baseline report is a first step in the evaluation of the MacArthur Foundation's initiative to improve maternal and reproductive health in Mexico by helping to institutionalize professional midwifery. The foundation's strategy concentrates on contributing to lasting, measurable, and targeted changes in the maternal and reproductive health landscape of Mexico by capitalizing on and strengthening momentum around building a new cadre of professional midwives, in order to reach a tipping point that will allow for improved quality of care and, eventually, better maternal health outcomes.The purpose of the baseline evaluation was to understand the starting points for the initiative with respect to:Midwifery and maternal health care in MexicoTraining in professional midwiferyDemand for and understanding of professional midwiferyThe legal and policy framewor

The Future of Disability in Alaska Summit & Follow-up Survey

The Future of Disability in Alaska Summit was held in Anchorage in the summer of 2013, May 9-10. The purpose was to gather perspectives from a diverse group of stakeholders to inform a vision of the future for people with disabilities in Alaska in five broad topical areas: 1) Housing Arrangements, 2) Advocacy, 3) Relationships, 4) Economic Wellbeing, and 5) Health. About 76 stakeholders participated in the summit including people with disabilities, family members, advocates, service providers, policymakers, and others. A follow-up online survey was conducted to gather information from a broader range of stakeholders and to get a sense of the highest priorities in each area. The purpose of the report and other products coming out of this effort is to inspire stakeholders to periodically reflect, individually and in groups, on how they are working toward the vision in a relevant area and taking action in the context of advocacy, policy/regulation, funding, and services/resources. The report states a vision for each of the five topical areas and includes many suggested strategies to accomplish it.Funded in part by Grant Number T7320663 from the Maternal and Child Health Bureau, Health Resources and Services Administration; and Grant Number 90DD0009-02-00 from the Administration on Intellectual and Developmental Disabilities, Administration for Community Living; both in the U.S. Department of Health and Human ServicesList of Tables / Executive Summary / Introduction / Method / Participants / Result

Individuals with filaggrin-related eczema and asthma have increased long-term medication and hospital admission costs

Background Eczema and asthma are chronic diseases with onset usually before the age of 5 years. More than 50% of individuals with eczema will develop asthma and/or other allergic diseases. Several loss‐of‐function mutations in filaggrin (FLG) have been identified in patients with eczema. However, the association of FLG with healthcare use is unknown. Objectives To determine whether FLG mutations are associated with increased prescribing for eczema and asthma and whether increased prescribing is associated with increased healthcare costs. Methods A secondary analysis of BREATHE, a cross‐sectional study of gene–environment associations with asthma severity, was undertaken. BREATHE data was collected for 1100 participants with asthma, in Tayside and Fife, Scotland during the period 2003–2005. Through collaboration with the Health Informatics Centre in Dundee, BREATHE was linked to accident and emergency, community prescribing and Scottish morbidity records. The data linkage allowed longitudinal exploration of associations between genetic variation and prescribing. Results An association was found between FLG mutations and increased prescribing for mild and moderate eczema, asthma‐reliever medicine and asthma exacerbations. A strong association was found between FLG mutations and prescribing of emollients [incidence rate ratio (IRR) 2·19, 95% confidence interval (CI) 1·36–3·52], treatment for severe eczema (IRR 2·18, 95% CI 1·22–3·91) and a combination of a long‐acting β2‐agonist and corticosteroids (IRR 3·29, 95% CI 1·68–6·43). Conclusions The presence of FLG mutations in this cohort is associated with increased prescribing for eczema and asthma. Randomized controlled trials are required to determine if these individuals could benefit from management strategies to reduce morbidity and treatment costs

'I think positivity breeds positivity': a qualitative exploration of the role of family members in supporting those with chronic musculoskeletal pain to stay at work

Background: It is proposed that family members are important sources of support in helping those with chronic musculoskeletal pain to remain at work, but the phenomenon remains largely unexplored. The aim of this study was to examine the extent and nature of support provided by family members in this respect. Methods: Qualitative data were collected from workers and their ‘significant others’ spouses/partners/close family members) in two un-related studies focused on working with pain; one conducted in the United Kingdom (n = 10 dyads) and one in the Netherlands (n = 21 dyads). Thematic analysis techniques were applied to both sets of data independently, and findings were then assimilated to establish common themes. Results: Findings were broadly similar in both studies. Workers acknowledged significant other support in helping them to manage their pain and remain at work, and their descriptions of the type of support provided and required were echoed by their significant others. Three common themes were identified - ‘connectivity’, ‘activity’ and ‘positivity’. Worker and significant other responses were largely congruent, but significant others provided more in-depth information on the nature of their support, their concerns and the impact on their relationship. Conclusions: This research presents novel insights about the specific contribution made by significant others in helping their relatives with chronic musculoskeletal pain to stay at work. These findings add to the under-represented ‘social’ dimension of the biopsychosocial model currently applied to our understanding and treatment of pain, and point to harnessing support from significant others as a potentially effective management strategy