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

A smartphone-based health care chatbot to promote self-management of chronic pain (SELMA) : pilot randomized controlled trial

Background: Ongoing pain is one of the most common diseases and has major physical, psychological, social, and economic impacts. A mobile health intervention utilizing a fully automated text-based health care chatbot (TBHC) may offer an innovative way not only to deliver coping strategies and psychoeducation for pain management but also to build a working alliance between a participant and the TBHC. Objective: The objectives of this study are twofold: (1) to describe the design and implementation to promote the chatbot painSELfMAnagement (SELMA), a 2-month smartphone-based cognitive behavior therapy (CBT) TBHC intervention for pain self-management in patients with ongoing or cyclic pain, and (2) to present findings from a pilot randomized controlled trial, in which effectiveness, influence of intention to change behavior, pain duration, working alliance, acceptance, and adherence were evaluated. Methods: Participants were recruited online and in collaboration with pain experts, and were randomized to interact with SELMA for 8 weeks either every day or every other day concerning CBT-based pain management (n=59), or weekly concerning content not related to pain management (n=43). Pain-related impairment (primary outcome), general well-being, pain intensity, and the bond scale of working alliance were measured at baseline and postintervention. Intention to change behavior and pain duration were measured at baseline only, and acceptance postintervention was assessed via self-reporting instruments. Adherence was assessed via usage data. Results: From May 2018 to August 2018, 311 adults downloaded the SELMA app, 102 of whom consented to participate and met the inclusion criteria. The average age of the women (88/102, 86.4%) and men (14/102, 13.6%) participating was 43.7 (SD 12.7) years. Baseline group comparison did not differ with respect to any demographic or clinical variable. The intervention group reported no significant change in pain-related impairment (P=.68) compared to the control group postintervention. The intention to change behavior was positively related to pain-related impairment (P=.01) and pain intensity (P=.01). Working alliance with the TBHC SELMA was comparable to that obtained in guided internet therapies with human coaches. Participants enjoyed using the app, perceiving it as useful and easy to use. Participants of the intervention group replied with an average answer ratio of 0.71 (SD 0.20) to 200 (SD 58.45) conversations initiated by SELMA. Participants’ comments revealed an appreciation of the empathic and responsible interaction with the TBHC SELMA. A main criticism was that there was no option to enter free text for the patients’ own comments. Conclusions: SELMA is feasible, as revealed mainly by positive feedback and valuable suggestions for future revisions. For example, the participants’ intention to change behavior or a more homogenous sample (eg, with a specific type of chronic pain) should be considered in further tailoring of SELMA

Empowerment or Engagement? Digital Health Technologies for Mental Healthcare

We argue that while digital health technologies (e.g. artificial intelligence, smartphones, and virtual reality) present significant opportunities for improving the delivery of healthcare, key concepts that are used to evaluate and understand their impact can obscure significant ethical issues related to patient engagement and experience. Specifically, we focus on the concept of empowerment and ask whether it is adequate for addressing some significant ethical concerns that relate to digital health technologies for mental healthcare. We frame these concerns using five key ethical principles for AI ethics (i.e. autonomy, beneficence, non-maleficence, justice, and explicability), which have their roots in the bioethical literature, in order to critically evaluate the role that digital health technologies will have in the future of digital healthcare

Inter-cultural differences in response to a computer-based anti-bullying intervention

Background and purpose: Many holistic anti-bullying interventions have been attempted, with mixed success, while little work has been done to promote a 'self-help' approach to victimisation. The rise of the ICT curriculum and computer support in schools now allows for approaches that benefit from technology to be implemented. This study evaluates the cross-cultural effects of a computer-based anti-bullying intervention on primary school-aged children's knowledge about bullying and relevant coping strategies. Programme description: FearNot! is an interactive computer-based virtual learning environment designed for use as an anti-bullying intervention. It includes interactive virtual agents who assume the most common participant roles found in episodes of bullying. FearNot! was used by children over three consecutive weeks to allow its effectiveness to be evaluated in a longitudinal in situ programme. Sample: Two comparable samples were drawn from the UK and Germany. In the UK, 651 participants (aged 8-11) were recruited from primary schools in Hertfordshire, Coventry and Warwickshire, whereas the 535 German participants (aged 7-10) were sourced from Grundschulen in the Bayern and Hessen regions. Because of lack of parental consent, late joiners and absences/missing responses, data from 908 participants (UK 493; Germany 415) were analysed. Design and methods: A quasi-experimental, pre/post-tests control group design employed pre-published and bespoke questionnaires to collect data. Descriptive and inferential analyses were conducted. Results: UK students possessed higher coping strategy knowledge scores than German participants, but German children's scores improved over time and as a result of the FearNot! intervention. Conclusions: Overall, while not effective at increasing children's coping strategy knowledge in this study, the FearNot! intervention could prove a useful classroom tool to approach the issue of bullying as part of a wider initiative. Cultural differences at baseline and reactions to the intervention are discussed

School Climate: Practices for Implementation and Sustainability

The National School Climate Center (NSCC) School Climate Practice Briefs -- Practices for Implementation and Sustainability -- present the latest in research and best practice for effective school climate reform from leading experts. The 11 issues selected to be included in this set of Practice Briefs are based on NSCC's decade-long work with the entire academic community -- teachers, staff, school-based mental health professionals, students and parents -- to improve a climate for learning.These School Climate Briefs for Implementation and Sustainability focus on both the "what?" - what are the foundational standards, research and measurements of school climate; and the "so what?" - what practices individuals, schools and communities can employ to measure and improve school climate for maximum impacts. We encourage a review of the entire set of Briefs as they demonstrate how school climate aligns with current opportunities and challenges schools face to ensure quality, safe, equitable and engaging environments for students and adults

Building coalitions, creating change: An agenda for gender transformative research in agricultural development

The CGIAR Research Program on Aquatic Agricultural Systems (AAS) has developed its Gender Research in Development Strategy centered on a transformative approach. Translating this strategy into actual research and development practice poses a considerable challenge, as not much (documented) experience exists in the agricultural sector to draw on, and significant innovation is required. A process of transformative change requires reflecting on multiple facets and dimensions simultaneously. This working paper is a collation of think pieces, structured around broad the mes and topics, reflecting on what works (and what does not) in the application of gender transformative approaches in agriculture and other sectors, and seeking to stimulate a discussion on the way forward for CGIAR Research Programs (CRPs) and other programs to build organizational capacities and partnerships

Performative ontologies. Sociomaterial approaches to researching adult education and lifelong learning

Sociomaterial approaches to researching education, such as those generated by actornetwork theory and complexity theory, have been growing in significance in recent years, both theoretically and methodologically. Such approaches are based upon a performative ontology rather than the more characteristic representational epistemology that informs much research. In this article, we outline certain aspects of sociomaterial sensibilities in researching education, and some of the uptakes on issues related to the education of adults. We further suggest some possibilities emerging for adult education and lifelong learning researchers from taking up such theories and methodologies. (DIPF/Orig.

Past practices: rethinking individuals and agents in archaeology

Archaeologists who seek to examine people's roles in past societies have long assumed, consciously or unconsciously, the existence of individuals. In this study, we explore various concepts and dimensions of ‘the individual’, both ethnographic and archaeological. We show that many protagonists in the debate over the existence of ‘individuals’ in prehistory use the same ethnographic examples to argue their positions. These positions range from the claim that any suggestion of individuals prior to 500 years ago simply projects a construct of western modernity onto the past, to the view that individual identities are culturally specific social constructs, both past and present. Like most contributors to the debate, we too are sceptical of an unchanging humanity in the past, but we feel that thinking on the topic has become somewhat inflexible. As a counterpoint to this debate, therefore, we discuss Bourdieu's concept of habitus in association with Foucault's notion of power. We conclude that experiencing oneself as a living individual is part of human nature, and that archaeologists should reconsider the individual's social, spatial and ideological importance, as well as the existence of individual, embodied lives in prehistoric as well as historical contexts