Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research

<b>Background</b> Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.<p></p> <b>Methods and findings</b> The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.<p></p> <b>Conclusions</b> Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems

A Note on Self-Authorship: Resolving Pain for a Hopeful Today

A letter to my College Application Process. I hope it is okay that I write you today. It has been a while, 16 years to be exact, but sometimes a while is just how long things take before we are ready to address them. I blamed you for making me feel less-than, like I was not worthy of being someone’s first choice for a long time. It was easy for me to draw that conclusion after years of mediocre academic performances coupled with your initial decision to waitlist me. I explored Marcia Baxter Magolda’s (1999, 2009, 2013) research on the development of self-authorship in young adults. Her work identifies a framework for understanding the on-going process by which we make sense of the world around us. Self-authorship requires us to take a curious approach to life and continually reexamine our beliefs, identities, and social relations (Baxter Magolda, 2009). In doing so, we strengthen our critical thinking skills and define personal values that provide the guidance to navigate this complex changing world. A self-authored person lives their values in mind, body and spirit. If we learn through resolving our pain, as Baxter Magolda suggests, then I still have a few more lessons to learn from our relationship (2013). After much back and forth, I decided to reconnect through this letter, and all I am asking in return is that you read with care. Perhaps, you will come to value our relationship differently, as I have

An evaluation of a nurse led unit: an action research study

This study is an exemplar of working in a participatory way with members of the public and health and social care practitioners as co-researchers. A Nurse Consultant Older People working in a nurse-led bed, intermediate care facility in a community hospital acted as joint project lead with an academic researcher. From the outset, members of the public were part of a team of 16 individuals who agreed an evaluation focus and were involved in all stages of the research process from design through to dissemination. An extensive evaluation reflecting all these stakeholders’ preferences was undertaken. Methods included research and audit including: patient and carer satisfaction questionnaire surveys, individual interviews with patients, carers and staff, staff surveys, graffiti board, suggestion box, first impressions questionnaire, patient tracking and a bed census. A key aim of the study has been capacity building of the research team members which has also been evaluated. In terms of impact, the co-researchers have developed research skills and knowledge, grown in confidence, developed in ways that have impacted elsewhere in their lives, developed posters, presented at conferences and gained a better understanding of the NHS. The evaluation itself has provided useful information on the processes and outcomes of intermediate care on the ward which was used to further improve the service

Screening and Assessment in TANF/Welfare-to-Work: Local Answers to Difficult Questions

Welfare reform efforts and significant caseload declines have resulted in a commonly held belief that those remaining on welfare face multiple barriers to employment, or are in some way "hard-to-serve." Clients with complex barriers to employment, disabilities, or medical conditions, are often grouped under this broad heading. One of the most significant challenges facing states and localities related to serving the hard-to-serve population is identifying the specific conditions and disabilities clients have that may be a barrier to finding and maintaining employment.In 1999, the U.S. Department of Health and Human Services contracted with the Urban Institute to conduct a Study of Screening and Assessment in TANF/Welfare-to-Work (WtW). The first phase of the study involved a review of the issues and challenges faced by TANF agencies and their partners in developing strategies and selecting instruments to identify substance abuse and mental health problems, learning disabilities, and domestic violence situations among TANF clients. The issues and challenges identified through that review are presented in Ten Important Questions TANF Agencies and Their Partners Should Consider (hereafter referred to as Ten Important Questions). The second phase of the study involved case studies of a limited number of localities to further explore how TANF agencies and their partners responded to the issues and challenges identified during phase one. The findings from the case studies are presented in this report.Findings are based on discussions held between November 2000 and February 2001 with TANF agency staff and staff of key partner agencies in six localities: Montgomery County, KS, Owensboro, KY, Minneapolis, MN (the IRIS Program), Las Vegas, NV, Arlington, VA, and Kent, WA

Gender stereotypes and the apology in a small state : uncovering Creole male stereotypes in the Seychelles using digital matched-guise methodology

Recent research in the Seychelles speaks of a “growing crisis of masculinity”, manifested in statistics such as a ten-year life expectancy difference in favour of women, alarmingly high levels of substance abuse amongst younger men, and underachievement of boys in schools. According to the authors, males are generally disempowered by stereotypical views of males as “irresponsible”, “unreliable” and “secondary to women”. Similar gender patterns have been observed in other ex-slavery Creole cultures such as the small states in the Caribbean, and some scholars argue that these structures have historical origins dating back to slavery. In this study, we seek to explore aspects of Seychellois stereotypes of masculinity through so-called matched-guise experiments. Through digital manipulations of voice quality, we produce identity-warped male and female versions of the same monologue recording – a short apology. We then asked respondents to listen to the recordings and respond to the same in a short online questionnaire, where we ask questions relating to their impressions of the apology and the speaker. Dimensions here include honesty-dishonesty; politenessimpoliteness; weakness-strength; and reliability-unreliability. Differences in results of responses to male and female versions of the apology give strong indications that Seychellois stereotypically view males as dishonest, unreliable, lazy and careless. We discuss potential origins and consequences of such constructions, and propose awareness-raising measures for how these destructive historically produced scripts of gender can be rewritten.peer-reviewe

Uncovering the inner power of teachers’ lives: Towards a learning profession

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Sustainability experiments in the agri-food system : uncovering the factors of new governance and collaboration success

In recent years, research, society and industry recognize the need to transform the agri-food system towards sustainability. Within this process, sustainability experiments play a crucial role in transforming the structure, culture and practices. In literature, much attention is given to new business models, even if the transformation of conventional firms toward sustainability may offer opportunities to accelerate the transformation. Further acceleration could be achieved through collaboration of multiple actors across the agri-food system, but this calls for a systems approach. Therefore, we developed and applied a new sustainability experiment systems approach (SESA) consisting of an analytical framework that allows a reflective evaluation and cross-case analysis of multi-actor governance networks based on business and learning evaluation criteria. We performed a cross-case analysis of four agri-food sustainability experiments in Flanders to test and validate SESA. Hereby, the key factors of the success of collaboration and its performance were identified at the beginning of a sustainability experiment. Some of the key factors identified were risk sharing and the drivers to participate. We are convinced that these results may be used as an analytical tool for researchers, a tool to support and design new initiatives for policymakers, and a reflective tool for participating actors

Doctoral‐Level Counseling Students’ Experiences of Social Class Microaggressions

The authors recruited 11 doctoral‐level counseling students to participate in a study exploring the lived experiences of people who have encountered social class microaggressions (SCMs). Findings (consisting of 6 themes) suggest that SCMs are a distinct phenomenon arising from interpersonal and environmental exchanges that damage recipients. The authors present implications for counselor education and future research trajectories

Teaching archive skills: a pedagogical journey with impact

This article considers the pedagogical practice of the Special Collections staff team at the University of Sussex and the impact of the group visit experience on student learning. It addresses our current group visit teaching offer to students at the University of Sussex and our move to a more student-led active learning approach. It considers the use of the ‘pedagogical toolkit’ including technology within the classroom, and the creation of a document identification form to encourage critical thinking. Our aim for any group visit is to provide a positive first experience and get students enthused about using archives. In 2017 we undertook our own impact study, detailed within the article, to follow the student journey with the intention of finding out if students returned to use archives for their studies as a result of their group visit. Moving forward, this article considers our future activities in response to the impact study and institutional initiatives