CFP for the Special Issue on Designing Digital Technologies
for the Lifespan of People with Neurodegenerative Conditions
To appear on Frontiers in Digital Health
Deadline: 13 October, 2021
More information: https://bit.ly/SINeuroLifespan
BACKGROUND:
Neurological disorders represent a growing global health challenge, with
the World Health Organisation classifying them as the leading cause of
disability adjusted life years, and the second leading cause of death, in
their 2016 Global Burden of Disease study. Neurodegenerative conditions
(e.g. Parkinson’s disease, Huntington’s disease, Alzheimer’s disease,
Motor
Neurone Disease, Multiple Sclerosis) are particularly complex due to their
progressive nature, meaning that symptoms must be continuously monitored
and treatments adjusted. Individuals living with a neurodegenerative
condition, and their loved ones, become experts in their own condition,
conducting daily self-monitoring and management practices and making
adjustments to their lives to support changes in symptoms and function.
Aside from physical changes that they are required to navigate, there are
also a range of socio-emotional challenges to manage, including social
stigma, mental health issues, behavioural changes related to cognitive
decline, and perceived loss of control.
Advancements in wearable and sensing technologies have allowed more
longitudinal monitoring of symptoms, opening up possibilities for
technology to measure disease fluctuation and progression. Despite this
opportunity, these sensor-based approaches are heavily reliant on user
contribution and can be invasive over long periods of time. They also often
only engage individuals in passive collection of data, with data supporting
clinical decision making. There is a need for work which involves
individuals more actively in the process, to enhance a sense of control,
facilitate the daily self-care practices that individuals and their loved
ones carry out, and improve shared decision making with their clinicians.
In addition, technologies tend to be designed (and often evaluated) with
people in the early to mid-stages of their condition, failing to reflect
the diversity of experience of those in the later stages and reducing the
accessibility of possibly beneficial solutions to a broader set of users.
TOPICS OF INTEREST:
This issue aims to highlight work which has considered the design of
technologies to support people with neurodegenerative conditions across the
lifespan of their condition. Possible themes may include (but are not
limited to):
- Work attempting to address the usability and accessibility of technology
at different stages of progression
- New or adapted design approaches that support the engagement of people
with more advanced disease states
- Novel examples of technologies that support shared decision making
between people with neurodegenerative conditions and their clinicians
- Adaptive or customisable technologies that support self-care practice
across the lifespan of the disease
- Studies which draw upon the ethical considerations of working with people
with neurodegenerative conditions in design led research
- Work that has actively considered long-term data legacy, consent and data
ethics, particularly in the case of cognitive decline
- Advancements in monitoring algorithms or systems which have been trained
on people at all stages of the disease
IMPORTANT DATES:
- Full paper submission deadline: 13 October, 2021
- Publication: on a rolling basis
Authors are encouraged to send an abstract for feedback on the fit of the
study to the issue.
SPECIAL ISSUE EDITORS:
Roisin Mcnaney, Monash University
Julio Vega, University of Pittsburgh
Kellie Morrissey, University of Limerick
Francisco Nunes, Fraunhofer Portugal AICOS
Chris Moran, Monash University
EASST's Eurograd mailing list
Eurograd (at) lists.easst.net
Unsubscribe or edit subscription options: http://lists.easst.net/listinfo.cgi/eurograd-easst.net
Meet us via https://twitter.com/STSeasst
Report abuses of this list to Eurograd-owner@lists.easst.net
