Participatory design of an infographic to help support the care of people living with complex regional pain syndrome

被引:1
|
作者
Beales, Darren [1 ,2 ,7 ]
Ho, Yi Ki [1 ,2 ]
Lewin, James [1 ,2 ]
Loh, Bianca Wen-Qi [1 ,2 ]
Yusof, Amirah Binte [1 ,2 ]
Grieve, Sharon [3 ,4 ]
Ranelli, Sonia [1 ,2 ]
Holthouse, David [5 ]
Mitchell, Tim [6 ]
Slater, Helen [1 ,2 ]
机构
[1] Curtin Univ, Curtin enAble Inst, Perth, WA, Australia
[2] Curtin Univ, Curtin Sch Allied Hlth, Perth, WA, Australia
[3] Royal United Hosp Bath NHS Fdn Trust, Bath, England
[4] Univ West England, Bristol, England
[5] Claremont Pain Clin, Perth, WA, Australia
[6] Pain Opt, South Perth, WA, Australia
[7] Curtin Univ, Sch Allied Hlth, GPO Box U1987, Perth, WA 6845, Australia
基金
澳大利亚国家健康与医学研究理事会;
关键词
Complex regional pain syndrome; lived experience; support; consumer engagement; participatory design; infographic; LIVED EXPERIENCE; HEALTH LITERACY; INFORMATION; NEEDS; COMMUNICATION; COMPREHENSION; PRINCIPLES; STRATEGIES; DELPHI; CRPS;
D O I
10.1177/20494637231190587
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Background Complex regional pain syndrome (CRPS) can be a debilitating pain condition with enduring physical, psychological and social impacts. CRPS is often poorly understood by healthcare professionals and management needs to be tailored to each individual's presentation. People with lived experience express difficulty in accessing reliable and meaningful information about the condition. This study aimed to co-create a trustworthy infographic to share information about the lived experience of CRPS. Methods We adopted a seven-phase, iterative, participatory methodology to co-create the infographic. Potential infographic content was obtained from qualitative work investigating the lived experience of CRPS. Online consumer engagement (people with doctor diagnosed CRPS/their family, n=20) was used to prioritise content to be included in the infographic and then potential designs were sourced. The research team narrowed the selections down to two designs which were presented to consumers online for final selection (n=25) and refinement (n=34). Results An infographic for understanding the lived experience of CRPS was completed using participatory design, providing a resource aligned to the needs of people with this condition. Using the Patient Education Materials Assessment Tool, the final infographic rated highly for understandability (92%) and participants indicated significant willingness to share this infographic with others (93%). Conclusion A process of participatory design was an effective and efficient process for translation of evidence gathered from qualitative research into a trustworthy resource for people with CRPS and their support people.
引用
收藏
页码:519 / 531
页数:13
相关论文
共 50 条
  • [1] LIVING WITH CHRONIC PAIN: AN INVESTIGATION OF ONLINE EDUCATIONAL RESOURCES FOR PEOPLE LIVING WITH COMPLEX REGIONAL PAIN SYNDROME
    Fry, Katharine
    Grieve, Sharon
    Llewellyn, Alison
    McCabe, Candy
    [J]. RHEUMATOLOGY, 2019, 58
  • [2] Living with Complex Regional Pain Syndrome: A qualitative study
    Poole, H.
    Pope, C.
    Murphy, P.
    Goebel, A.
    [J]. PSYCHOLOGY & HEALTH, 2009, 24 : 322 - 322
  • [3] THE PATIENT'S PERSPECTIVE OF LIVING WITH COMPLEX REGIONAL PAIN SYNDROME
    Connett, R.
    [J]. ANNALS OF THE RHEUMATIC DISEASES, 2018, 77 : 38 - 38
  • [4] Loss-adjusting Young People's Constructions of a Future Living With Complex Regional Pain Syndrome
    Jones, Abigail
    Caes, Line
    Eccleston, Christopher
    Noel, Melanie
    Rugg, Tessa
    Jordan, Abbie
    [J]. CLINICAL JOURNAL OF PAIN, 2020, 36 (12): : 932 - 939
  • [5] Compassionate Care for Patients With Complex Regional Pain Syndrome
    Schneider, Melissa A.
    Smith, Carolyn E.
    Pomidor, Michelle A.
    [J]. JOURNAL OF NEUROSCIENCE NURSING, 2015, 47 (04) : 204 - 210
  • [6] Seeking support: An interpretative phenomenological analysis of an Internet message board for people with Complex Regional Pain Syndrome
    Rodham, Karen
    McCabe, Candy
    Blake, David
    [J]. PSYCHOLOGY & HEALTH, 2009, 24 (06) : 619 - 634
  • [7] Effectiveness of Decision Support to Treat Complex Regional Pain Syndrome
    Ryskalin, Larisa
    Ghelarducci, Giulia
    Marinelli, Chiara
    Morucci, Gabriele
    Soldani, Paola
    Bertozzi, Nicolo
    Annoscia, Paolo
    Poggetti, Andrea
    Gesi, Marco
    [J]. APPLIED SCIENCES-BASEL, 2022, 12 (18):
  • [8] Thought Intrusion Among Adults Living With Complex Regional Pain Syndrome
    Lohnberg, Jessica A.
    Altmaier, Elizabeth M.
    [J]. REHABILITATION PSYCHOLOGY, 2014, 59 (02) : 171 - 175
  • [9] COMPLEX REGIONAL PAIN SYNDROME Diagnosis of complex regional pain syndrome needs to be tightened
    Basler, Michael H.
    Rae, Colin P.
    Stewart, Gordon
    [J]. BMJ-BRITISH MEDICAL JOURNAL, 2014, 348
  • [10] COMPLEX REGIONAL PAIN SYNDROME Early management of complex regional pain syndrome is crucial
    Notcutt, William G.
    [J]. BMJ-BRITISH MEDICAL JOURNAL, 2014, 349