Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory

被引:13
作者
Bennett, Sarah E. [1 ]
Walsh, Nicola [1 ]
Moss, Tim [2 ]
Palmer, Shea [1 ]
机构
[1] Univ West England, Ctr Hlth & Clin Res, Dept Allied Hlth Profess, Bristol, Avon, England
[2] Univ West England, Ctr Appearance Res, Dept Hlth & Social Sci, Bristol, Avon, England
关键词
Hypermobility; Ehlers-Danlos syndromes; self-management; behaviour change wheel; CHRONIC KNEE PAIN; JOINT HYPERMOBILITY; INDIVIDUALS; PATIENT; CARE; CONSENSUS; PEOPLE; CLASSIFICATION; IMPLEMENTATION; EXPERIENCES;
D O I
10.1080/09638288.2021.1933618
中图分类号
R49 [康复医学];
学科分类号
100215 ;
摘要
Purpose Hypermobility Spectrum Disorders (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS) are heritable connective tissue disorders associated with joint instability and pain, but with scant guidance for supporting patients. The aim was to determine recommendations for an HSD/hEDS self-management intervention. Materials and methods Barriers to self-management were mapped onto the Theoretical Domains Framework (TDF) and Capability, Opportunity, Motivation-Behaviour (COM-B) model in a behavioural analysis. A modified Nominal Group Technique was used to prioritise behaviour change technique (BCT) interventions (n = 9 women). Results Possible BCTs incorporated: Education Incorporating self-help strategies, education to improve their knowledge of HSD/hEDS, and how to judge information about HSD/hEDS. Training In activity pacing, assertiveness and communication skills, plus what to expect during pregnancy, when symptoms can worsen. Environmental restructuring and enablement Support from occupational therapists to maintain independence at work and home. Modelled behaviour That illustrates how other people with HSD/hEDS have coped with the psychosocial impact. Conclusions This study is the first to apply theoretically-informed approaches to the management of HSD/hEDS. Participants indicated poor access to psychological support, occupational therapy and a lack of knowledge about HSD/hEDS. Future research should evaluate which intervention options would be most acceptable and feasible.
引用
收藏
页码:5231 / 5240
页数:10
相关论文
共 54 条
[31]   The 2017 International Classification of the Ehlers-Danlos Syndromes [J].
Malfait, Fransiska ;
Francomano, Clair ;
Byers, Peter ;
Belmont, John ;
Berglund, Britta ;
Black, James ;
Bloom, Lara ;
Bowen, Jessica M. ;
Brady, Angela F. ;
Burrows, Nigel P. ;
Castori, Marco ;
Cohen, Helen ;
Colombi, Marina ;
Demirdas, Serwet ;
De Backer, Julie ;
De Paepe, Anne ;
Fournel-Gigleux, Sylvie ;
Frank, Michael ;
Ghali, Neeti ;
Giunta, Cecilia ;
Grahame, Rodney ;
Hakim, Alan ;
Jeunemaitre, Xavier ;
Johnson, Diana ;
Juul-Kristensen, Birgit ;
Kapferer-Seebacher, Ines ;
Kazkaz, Hanadi ;
Kosho, Tomoki ;
Lavallee, Mark E. ;
Levy, Howard ;
Mendoza-Londono, Roberto ;
Pepin, Melanie ;
Pope, F. Michael ;
Reinstein, Eyal ;
Robert, Leema ;
Rohrbach, Marianne ;
Sanders, Lynn ;
Sobey, Glenda J. ;
Van Damme, Tim ;
Vandersteen, Anthony ;
Van Mourik, Caroline ;
Voermans, Nicol ;
Wheeldon, Nigel ;
Zschocke, Johannes ;
Tinkle, Brad .
AMERICAN JOURNAL OF MEDICAL GENETICS PART C-SEMINARS IN MEDICAL GENETICS, 2017, 175 (01) :8-26
[32]   Learning to live with the pain: acceptance of pain predicts adjustment in persons with chronic pain [J].
McCracken, LM .
PAIN, 1998, 74 (01) :21-27
[33]  
McMurray A R, 1994, J Nurs Staff Dev, V10, P62
[34]   Making psychological theory useful for implementing evidence based practice: a consensus approach [J].
Michie, S ;
Johnston, M ;
Abraham, C ;
Lawton, R ;
Parker, D ;
Walker, A .
QUALITY & SAFETY IN HEALTH CARE, 2005, 14 (01) :26-33
[35]  
Michie S., 2015, BEHAV CHANGE WHEEL G
[36]   The Behavior Change Technique Taxonomy (v1) of 93 Hierarchically Clustered Techniques: Building an International Consensus for the Reporting of Behavior Change Interventions [J].
Michie, Susan ;
Richardson, Michelle ;
Johnston, Marie ;
Abraham, Charles ;
Francis, Jill ;
Hardeman, Wendy ;
Eccles, Martin P. ;
Cane, James ;
Wood, Caroline E. .
ANNALS OF BEHAVIORAL MEDICINE, 2013, 46 (01) :81-95
[37]   The behaviour change wheel: A new method for characterising and designing behaviour change interventions [J].
Michie, Susan ;
van Stralen, Maartje M. ;
West, Robert .
IMPLEMENTATION SCIENCE, 2011, 6
[38]   Self-management intervention for chronic pain in older adults: A randomised controlled trial [J].
Nicholas, Michael K. ;
Asghari, Ali ;
Blyth, Fiona M. ;
Wood, Bradley M. ;
Murray, Robin ;
McCabe, Rebecca ;
Brnabic, Alan ;
Beeston, Lee ;
Corbett, Mandy ;
Sherrington, Catherine ;
Overton, Sarah .
PAIN, 2013, 154 (06) :824-835
[39]   Relationship between changes in coping and treatment outcome in patients with Fibromyalgia Syndrome [J].
Nielson, WR ;
Jensen, MP .
PAIN, 2004, 109 (03) :233-241
[40]   Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material [J].
Nilsen, E. S. ;
Myrhaug, H. T. ;
Johansen, M. ;
Oliver, S. ;
Oxman, A. D. .
COCHRANE DATABASE OF SYSTEMATIC REVIEWS, 2006, (03)