title: Head-Up; An interdisciplinary, participatory and co-design process informing the development of a novel head and neck support for people living with progressive neck muscle weakness.
abstract: This paper presents the Head-Up project, that aims to provide innovative head support to help improve posture, relieve pain and aid communication for people living with progressive neck muscle weakness. The initial focus is motor neurone disease. The case study illustrates collaborative, interdisciplinary research and new product development underpinned by participatory design. The study was initiated by a 2-day stakeholder workshop followed by early proof-of-concept modelling and patient need evidence building. The work subsequently led to a successful NIHR i4i application funding a 24-month iterative design process, patenting, CE marking and clinical evaluation. The evaluation has informed amendments to the proposed design refered to here as the Sheffield Support Snood (SSS). The outcome positively demonstrates use and performance improvements over current neck orthoses and the process of multidisciplinary and user engagement has created a sense of ownership by MND participants, who have since acted as advocates for the product.
authors.affiliation: a Lab4Living, Sheffield Hallam University , Cantor Building, 153 Arundel Street , Sheffield S1 2NU , UK .
authors.forename: Heath
authors.initials: H
authors.lastname: Reed
authors.affiliation: a Lab4Living, Sheffield Hallam University , Cantor Building, 153 Arundel Street , Sheffield S1 2NU , UK .
authors.forename: Joe
authors.initials: J
authors.lastname: Langley
authors.affiliation: a Lab4Living, Sheffield Hallam University , Cantor Building, 153 Arundel Street , Sheffield S1 2NU , UK .
authors.forename: Andy
authors.initials: A
authors.lastname: Stanton
authors.affiliation: b National Institute for Health Research Devices for Dignity Healthcare Technology Cooperative , I Floor, Suite 100, Sheffield Teaching Hospitals Foundation Trust, Royal Hallamshire Hospital, Glossop Road , Sheffield S10 2JF , UK .|c Sheffield Teaching Hospitals NHS Foundation Trust , Sheffield , UK .
authors.forename: Nicola
authors.initials: N
authors.lastname: Heron
authors.affiliation: b National Institute for Health Research Devices for Dignity Healthcare Technology Cooperative , I Floor, Suite 100, Sheffield Teaching Hospitals Foundation Trust, Royal Hallamshire Hospital, Glossop Road , Sheffield S10 2JF , UK .|d Barnsley NHS Foundation Trust , Barnsley , UK .
authors.forename: Zoe
authors.initials: Z
authors.lastname: Clarke
authors.affiliation: b National Institute for Health Research Devices for Dignity Healthcare Technology Cooperative , I Floor, Suite 100, Sheffield Teaching Hospitals Foundation Trust, Royal Hallamshire Hospital, Glossop Road , Sheffield S10 2JF , UK .|d Barnsley NHS Foundation Trust , Barnsley , UK .
authors.forename: Simon
authors.initials: S
authors.lastname: Judge
authors.affiliation: b National Institute for Health Research Devices for Dignity Healthcare Technology Cooperative , I Floor, Suite 100, Sheffield Teaching Hospitals Foundation Trust, Royal Hallamshire Hospital, Glossop Road , Sheffield S10 2JF , UK .|c Sheffield Teaching Hospitals NHS Foundation Trust , Sheffield , UK .|e School of Health and Related Research, University of Sheffield , Regent Court, 30 Regent Street , Sheffield S1 4DA , UK .
authors.forename: Avril
authors.initials: A
authors.lastname: McCarthy
authors.affiliation: f Sheffield Institute for Translational Neuroscience, University of Sheffield , 385A Glossop Road , Sheffield S10 2HQ , UK , and.
authors.forename: Gill
authors.initials: G
authors.lastname: Squire
authors.affiliation: g South Yorkshire Motor Neurone Disease Association , PO Box 246 , Northampton NN1 2PR , UK.
authors.forename: Ann
authors.initials: A
authors.lastname: Quinn
authors.affiliation: b National Institute for Health Research Devices for Dignity Healthcare Technology Cooperative , I Floor, Suite 100, Sheffield Teaching Hospitals Foundation Trust, Royal Hallamshire Hospital, Glossop Road , Sheffield S10 2JF , UK .
authors.forename: Oliver
authors.initials: O
authors.lastname: Wells
authors.affiliation: b National Institute for Health Research Devices for Dignity Healthcare Technology Cooperative , I Floor, Suite 100, Sheffield Teaching Hospitals Foundation Trust, Royal Hallamshire Hospital, Glossop Road , Sheffield S10 2JF , UK .|c Sheffield Teaching Hospitals NHS Foundation Trust , Sheffield , UK .
authors.forename: Wendy
authors.initials: W
authors.lastname: Tindale
authors.affiliation: e School of Health and Related Research, University of Sheffield , Regent Court, 30 Regent Street , Sheffield S1 4DA , UK .
authors.forename: Susan
authors.initials: S
authors.lastname: Baxter
authors.affiliation: f Sheffield Institute for Translational Neuroscience, University of Sheffield , 385A Glossop Road , Sheffield S10 2HQ , UK , and.
authors.forename: Pamela J
authors.initials: PJ
authors.lastname: Shaw
authors.affiliation: f Sheffield Institute for Translational Neuroscience, University of Sheffield , 385A Glossop Road , Sheffield S10 2HQ , UK , and.
authors.forename: Christopher J
authors.initials: CJ
authors.lastname: McDermott
mesh_terms: D020811:Biomedical Technology / Q000379:methods / Q000458:organization & administration; D001915:Braces; D006801:Humans; D016472:Motor Neuron Disease / Q000534:rehabilitation*; D018908:Muscle Weakness / Q000534:rehabilitation*; D009334:Neck Muscles; D020380:Needs Assessment / Q000458:organization & administration; D010348:Patient Care Team / Q000458:organization & administration*; D010358:Patient Participation / Q000379:methods*; D018802:Patient-Centered Care / Q000379:methods / Q000458:organization & administration; D011474:Prosthesis Design / Q000379:methods*; D013673:Technology Assessment, Biomedical / Q000379:methods / Q000458:organization & administration; D006113:United Kingdom
keywords: Co-design; design innovation; healthcare; motor neurone disease; participatory design; quality-of-life