An Autonomy-Perspective on the Design of Assistive Technology Experiences of People with Multiple Sclerosis

Güldenpfennig, Florian; Mayer, Peter; Panek, Paul; Fitzpatrick, Geraldine

doi:10.1145/3290605.3300357

Cited by 17 publications

(14 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Technologies that incorporated customizable features, which the patient could control and toggle according to their personal preferences, were considered another motivator for successful recovery. Participant autonomy has been shown to positively impact motivation levels and user experience, thereby improving patient care experiences [71][72][73]. Technology-enabled, preference-based care has improved patient and health care professional outcomes [72][73][74].…”

Section: Principal Findingsmentioning

confidence: 99%

Designing the Optimal Digital Health Intervention for Patients’ Use Before and After Elective Orthopedic Surgery: Qualitative Study

Robinson¹,

Slight²,

Husband³

et al. 2021

J Med Internet Res

View full text Add to dashboard Cite

Background Health behavior changes made by patients during the perioperative period can impact the outcomes and success of elective surgeries. However, there remains a limited understanding of how best to support patients during this time, particularly through the use of digital health interventions. Recognizing and understanding the potential unmet needs of elective orthopedic surgery patients is central to motivating healthier behavior change, improving recovery, and optimizing overall surgical success in the short and long term. Objective The aim of this study is to explore patient perspectives on technology features that would help support them to change their lifestyle behaviors during the pre- and postoperative periods, and that could potentially maintain long-term healthy lifestyles following recovery. Methods Semistructured interviews with pre- and postoperative elective orthopedic patients were conducted between May and June 2020 using telephone and video call–based software. Patient perspectives on the use of digital technologies to complement current surgical care and support with lifestyle behavior changes were discussed. Interviews were audio recorded and transcribed verbatim. Reflexive thematic analysis enabled the development of themes from the data, with QSR NVivo software (version 12) facilitating data management. Ethical approval was obtained from the National Health Service Health Research Authority. Results A total of 18 participants were interviewed. Four themes were developed from the data regarding the design and functionality of digital technologies to best support the perioperative journey. These center around an intervention’s ability to incorporate interactive, user-centered features; direct a descriptive and structured recovery; enable customizable, patient-controlled settings; and deliver both general and specific surgical advice in a timely manner. Interventions that are initiated preoperatively and continued postoperatively were perceived as beneficial. Interventions designed with personalized milestones were found to better guide patients through a structured recovery. Individualized tailoring of preparatory and recovery information was desired by patients with previously high levels of physical activity before surgery. The use of personalized progression-based exercises further encouraged physical recovery; game-like rewards and incentives were regarded as motivational for making and sustaining health behavior change. In-built video calling and messaging features offered connectivity with peers and clinicians for supported care delivery. Conclusions Specific intervention design and functionality features can provide better, structured support for elective orthopedic patients across the entire surgical journey and beyond. This study provides much-needed evidence relating to the optimal design and timing of digital interventions for elective orthopedic surgical patients. Findings from this study suggest a desire for personalized perioperative care, in turn, supporting patients to make health behavior changes to optimize surgical success. These findings should be used to influence future co-design projects to enable the design and implementation of patient-focused, tailored, and targeted digital health technologies within modern health care settings.

show abstract

Section: Principal Findingsmentioning

confidence: 99%

Designing the Optimal Digital Health Intervention for Patients’ Use Before and After Elective Orthopedic Surgery: Qualitative Study

Robinson¹,

Slight²,

Husband³

et al. 2021

J Med Internet Res

View full text Add to dashboard Cite

show abstract

“…Here, we also identify a gap between the priorities of patients and the recommendations for further studies in reviews. Many reviews and qualitative studies show the benefits for health of assistive technology [66][67][68], assistive dogs [69][70][71][72], or companion animals in general [73][74][75][76][77], but recommend gaining more knowledge from quantitative research designs. Only a few studies propose a national policy on a topic, for example, assistive technology or the development of a framework for changing its implementation, e.g., [77].…”

Section: Discussionmentioning

confidence: 99%

What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again

Groot

Haveman²,

Buree³

et al. 2022

IJERPH

View full text Add to dashboard Cite

Health researchers increasingly work with patients in a participatory fashion. Active patient involvement throughout the research process can provide epistemic justice to patients who have often only had an informant role in traditional health research. This study aims to conduct participatory research on patient experiences to create a solid research agenda with patients and discuss it with relevant stakeholders. We followed a participatory research design in 18 sub-studies, including interviews and group sessions (n = 404 patients), and dialogue sessions (n = 367 professionals and directors in healthcare and social work, municipality civil servants, and funding agencies) on patient experiences with psychiatric care, community care, daycare, public health, and social work. Findings from the eight-year study show that four priorities stood out: attention for misuse of power and abuse; meaningful participation; non-human assistance, and peer support. Moreover, that: (1) patients, based on their experiences, prioritize different topics than experts; (2) most topics are trans-diagnostic and point to the value of a cross-disability approach; and (3) the priorities of patients are all too easily dismissed and require ethics work to prevent epistemic injustice. Long-term investment in a transdisciplinary community of practice offers a solid basis for addressing patient-centered topics and may impact the quality of life of people living with chronic illness, disability, or vulnerability.

show abstract

“…To understand such scenarios it is imperative to grasp how different aspects of agency and autonomy relate to one-another. While recent years have seen repeated calls to deal with autonomy in a nuanced and multi-faceted way [e.g., 26,64,75], it remains unclear what a multilevel understanding of agency and autonomy, adequate to the range of work in HCI, might look like. Some calls for nuance have focused only on particular domains, such as multiple sclerosis support [64].…”

Section: Agency and Autonomy In Hcimentioning

confidence: 99%

“…While recent years have seen repeated calls to deal with autonomy in a nuanced and multi-faceted way [e.g., 26,64,75], it remains unclear what a multilevel understanding of agency and autonomy, adequate to the range of work in HCI, might look like. Some calls for nuance have focused only on particular domains, such as multiple sclerosis support [64]. The METUX framework [28,132] offers a less domain specific approach and outlines several "spheres" of life into which interactions and their implications can be categorised -from interaction at the interface, to the user's wider life and society.…”

Section: Agency and Autonomy In Hcimentioning

confidence: 99%

“…Recent research has aimed to clarify understandings of these concepts in particular domains: in the autonomy experience of Multiple Sclerosis sufferers [64]; the immediate sense-of-agency over discrete interaction gestures [105]; and in human-AI interaction [27,28]. However, it is not clear how these accounts might relate to one another, nor where each sits within the broader landscape of research on agency and autonomy in HCI.…”

mentioning

confidence: 99%

See 1 more Smart Citation

How does HCI Understand Human Autonomy and Agency?

Bennett,

Metatla,

Roudaut

et al. 2023

Preprint

View full text Add to dashboard Cite

Human agency and autonomy have always been fundamental concepts in HCI. New developments, including ubiquitous AI and the growing integration of technologies into our lives, make these issues ever pressing, as technologies increase their ability to influence our behaviours and values. However, in HCI understandings of autonomy and agency remain ambiguous. Both concepts are used to describe a wide range of phenomena pertaining to sense-of-control, material independence, and identity. It is unclear to what degree these understandings are compatible, and how they support the development of research programs and practical interventions. We address this by reviewing 30 years of HCI research on autonomy and agency to identify current understandings, open issues, and future directions. From this analysis, we identify ethical issues, and outline key themes to guide future work. We also articulate avenues for advancing clarity and specificity around these concepts, and for coordinating integrative work across different HCI communities. CCS CONCEPTS• Human-centered computing → HCI theory, concepts and models.

show abstract

An Autonomy-Perspective on the Design of Assistive Technology Experiences of People with Multiple Sclerosis

Cited by 17 publications

References 30 publications

Designing the Optimal Digital Health Intervention for Patients’ Use Before and After Elective Orthopedic Surgery: Qualitative Study

Designing the Optimal Digital Health Intervention for Patients’ Use Before and After Elective Orthopedic Surgery: Qualitative Study

What Patients Prioritize for Research to Improve Their Lives and How Their Priorities Get Dismissed again

How does HCI Understand Human Autonomy and Agency?

Contact Info

Product

Resources

About