Needs of Head and Neck Cancer Patients and Stakeholders During Rehabilitation

The foreseen growth of Head and Neck cancer (HNC) incidents will require future rehabilitation services to meet the needs of a wider population. This study reports the empirical findings of a case study conducted at a cancer rehabilitation center in Copenhagen, aiming to elicit the needs of HNC patients, informal caregivers and healthcare professionals (HCPs). Our results point out that patients and stakeholders' needs are interrelated, as they faced common challenges pertinent to provision and distribution of information. This study, though preliminary, underlines the importance of inclusion of all actors in the design of future interventions

Changing role of users : Innovating responsibly in digital health

Despite the recognition of the importance of stakeholder inclusion into decisions about new solutions offered to society, responsible innovation (RI) has stalled at the point of articulating a process of governance with a strongly normative loading, without clear practical guidelines toward implementation practices. The principles of RI direct us to involve the user early in the innovation process. However, it lacks direction of how to involve users and stakeholders into this process. In this article, we try to understand how to empower users to become a part of innovation process though empirical cases. Based on 11 cases of firms innovating in digital health and welfare services, we look on firm practices for user integration into their innovation process, as well as how the user’s behavior is changing due to new trends such as availability of information and digitalization of services. We try to explore this question through lenses of responsible innovation in the emerging field of digital healthcare. Our findings indicate that users are not a homogenous group—rather, their willingness to engage in innovative processes are distributed across a spectrum, ranging from informed to involved and, at extreme, to innovative user. Further, we identified signs of user and stakeholder inclusion in all our cases—albeit in different degrees. The most common group of inclusion is with involved users, and firms’ practices varying from sharing reciprocal information with users, to integration through focus groups, testing or collecting a more formative feedbacks from users. Although user inclusion into design space is perceived as important and beneficial for matching with market demands, it is also a time-consuming and costly process. We conclude with debating some policy impacts, pointing to the fact that inclusion is a resource-consuming process especially for small firms and that policy instruments have to be in place in order to secure true inclusion of users into the innovation process. Our article sheds light on RI practices, and we also suggest some avenues for future research to identify more precisely whom to include, when to include and at what stage of the innovation process.publishedVersio

Till data do us part: Understanding data-based value creation in data-intensive infrastructures

Much of the literature on value creation in social media-based infrastructures has largely neglected the pivotal role of data and their processes. This paper tries to move beyond this limitation and discusses data-based value creation in data-intensive infrastructures, such as social media, by focusing on processes of data generation, use and reuse, and on infrastructure development activities. Building on current debates in value theory, the paper develops a multidimensional value framework to interrogate the data collected in an embedded ethnographical case study of the development of PatientsLikeMe, a social media network for patients. It asks when, and where, value is created from the data, and what kinds of value are created from them, as they move through the data infrastructure; and how infrastructure evolution relates to, and shapes, existing data-based value creation practices. The findings show that infrastructure development can have unpredictable consequences for data-based value creation, shaping shared practices in complex ways and through a web of interdependent situations. The paper argues for an understanding of infrastructural innovation that accounts for the situational interdependencies of data use and reuse. Uniquely positioned, the paper demonstrates the importance of research that looks critically into processes of data use in infrastructures to keep abreast of the social consequences of developments in big data and data analytics aimed at exploiting all kinds of digital traces for multiple purposes.This research is funded by the European Research Council (ERC) under the European Union's Seventh Framework Programme (FP7/2007–2013)/ERC grant agreement number 335925

Exploring the Hinterland: The Development of a Person-Centered Music Therapy Method for a Hospice Patient with Lewy Body Dementia

This thesis explores the development and implementation of a music therapy method with an individual diagnosed with dementia with Lewy Bodies (DLB) receiving home hospice services. There is very little known about the effect of music therapy on patients diagnosed with DLB. Informed by Tom Kitwood’s Person-Centered Care (PCC) philosophy for dementia care, Yumiko Sato’s Musical Life Review (MLR) model, and Lisa Kelly and Bill Ahessy’s Reminiscence-Focused Music Therapy (RFMT) model, a clinical method was developed to explore the effects of person-centered music therapy on reminiscence, caregiver connection, and identity. I drew inspiration from music therapy concepts by Tony Wigram as well as Hanne Mette Ochsner Ridder’s utilization of acoustic cueing with patients with dementia. Over a period of five weeks, I conducted five sessions each lasting forty-five minutes to an hour. Data were collected in the form of personal reflections and summaries of the method technique as well as recorded musical reflections. Inductive analysis was carried out for each reflection and summary. Themes from reflections and summaries were cross referenced with Tom Kitwood’s flower of psychological needs to further observe what occurred and assess how the method functioned within the PCC framework. Results suggest that person-centered music therapy can assist in promoting reminiscence, addressing psychological needs, and creating connection with a caregiver. In addition, the act of simple reminiscence allowed for the preservation of participant identity and personhood, and empowered him to hold and share his own lived experiences

Experiences of patients with chronic gastrointestinal conditions: in their own words

<p>Abstract</p> <p>Background</p> <p>Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) are chronic conditions affecting millions of individuals in the United States. The symptoms are well-documented and can be debilitating. How these chronic gastrointestinal (GI) conditions impact the daily lives of those afflicted is not well documented, especially from a patient's perspective.</p> <p>Methods</p> <p>Here we describe data from a series of 22 focus groups held at three different academic medical centers with individuals suffering from chronic GI conditions. All focus groups were audio recorded and transcribed. Two research team members independently analyzed transcripts from each focus group following an agreed upon coding scheme.</p> <p>Results</p> <p>One-hundred-thirty-six individuals participated in our study, all with a chronic GI related condition. They candidly discussed three broad themes that characterize their daily lives: identification of disease and personal identity, medications and therapeutics, and daily adaptations. These all tie to our participants trying to deal with symptoms on a daily basis. We find that a recurrent topic underlying these themes is the dichotomy of experiencing uncertainty and striving for control.</p> <p>Conclusions</p> <p>Study participants' open dialogue and exchange of experiences living with a chronic GI condition provide insight into how these conditions shape day-to-day activities. Our findings provide fertile ground for discussions about how clinicians might best facilitate, acknowledge, and elicit patients' stories in routine care to better address their experience of illness.</p

Patients\u27 Perceptions of Quality of Life and Resource Availability After Critical Illness

Physical, psychological, and social debilities are common among survivors of critical illness. Survivors of critical illness require rehabilitative services during recovery in order to return to functional independence, but the structure and access of such services remains unclear. The purpose of this qualitative study was to explore the vital issues affecting quality of life from the perspective of critical illness survivors and to understand these patients\u27 experiences with rehabilitative services in the United States. The theoretical framework guiding this study was Weber\u27s rational choice theory, and a phenomenological study design was employed. The research questions focused on the survivors\u27 experiences with rehabilitative services following critical illness and post-intensive care unit quality of life. Participants were recruited using purposeful sampling. A researcher developed instrument was used to conduct 12 semistructured interviews in central North Carolina. Data from the interviews were coded for thematic analysis. The findings identified that aftercare lacked unity, was limited by disparate information, and overuses informal caregivers. In addition, survivors\u27 recovery depended on being prepared for post-intensive care unit life, access to recovery specific support structures, and the survivors\u27 ability to adapt to a new normalcy. Survivors experienced gratitude for being saved, which empowered them to embrace new life priorities. The implications for social change include improved understanding of urgently needed health care policies to provide essential therapies and services required to support intensive care unit survivors on their journey to recovery

Mapping and Developing Service Design Research in the UK.

This report is the outcome of the Service Design Research UK (SDR UK) Network with Lancaster University as primary investigator and London College of Communication, UAL as co-investigator. This project was funded as part of an Arts and Humanities Research Council Network grant. Service Design Research UK (SDR UK), funded by an AHRC Network Grant, aims to create a UK research network in an emerging field in Design that is Service Design. This field has a recent history and a growing, but still small and dispersed, research community that strongly needs support and visibility to consolidate its knowledge base and enhance its potential impact. Services represent a significant part of the UK economy and can have a transformational role in our society as they affect the way we organize, move, work, study or take care of our health and family. Design introduces a more human centred and creative approach to service innovation; this is critical to delivering more effective and novel solutions that have the potential to tackle contemporary challenges. Service Design Research UK reviewed and consolidated the emergence of Service Design within the estalished field of Design

Graphic Agency: Teaching Graphic Medicine in the Liberal Arts Classroom

Graphic Agency: Teaching Graphic Medicine in the Liberal Arts Classroo