Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies

被引:12
作者
Topcu, Gogem [1 ]
Mhizha-Murira, Jacqueline R. [1 ]
Griffiths, Holly [1 ]
Bale, Clare [2 ]
Drummond, Avril [3 ]
Fitzsimmons, Deborah [4 ]
Potter, Kristy-Jane [1 ]
Evangelou, Nikos [1 ,5 ]
das Nair, Roshan [1 ,6 ]
机构
[1] Univ Nottingham, Sch Med, Mental Hlth & Clin Neurosci, Nottingham, England
[2] Multiple Sclerosis Patient & Publ Involvement Grp, Nottingham, England
[3] Univ Nottingham, Sch Hlth Sci, Nottingham, England
[4] Swansea Univ, Coll Human & Hlth Sci, Swansea Ctr Hlth Econ, Swansea, W Glam, Wales
[5] Nottingham Univ Hosp NHS Trust, Dept Neurol, Nottingham, England
[6] Nottinghamshire Healthcare NHS Trust, Inst Mental Hlth, Nottingham, England
关键词
Diagnosis; emotional adjustment; emotions; multiple sclerosis; psychological adaptation; qualitative research; systematic review; OF-LIFE; ILLNESS PERCEPTION; SELF-MANAGEMENT; COMMON-SENSE; PEOPLE; ADJUSTMENT; STRESS; WORK; MS;
D O I
10.1080/09638288.2022.2046187
中图分类号
R49 [康复医学];
学科分类号
100215 ;
摘要
Purpose This meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis. Methods Five electronic databases were systematically searched to identify qualitative studies that explored views and experiences around MS diagnosis. Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence. Results Thirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis. Conclusions Our synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis.
引用
收藏
页码:772 / 783
页数:12
相关论文
共 91 条
[1]  
[Anonymous], 2017, CASP QUAL STUD CHECK
[2]  
[Anonymous], 2020, ATL MS
[3]   Conducting a meta-ethnography of qualitative literature: Lessons learnt [J].
Atkins, Salla ;
Lewin, Simon ;
Smith, Helen ;
Engel, Mark ;
Fretheim, Atle ;
Volmink, Jimmy .
BMC MEDICAL RESEARCH METHODOLOGY, 2008, 8 (1)
[4]   Development and usability testing of a patient decision aid for newly diagnosed relapsing multiple sclerosis patients [J].
Bansback, Nick ;
Chiu, Judy A. ;
Carruthers, Robert ;
Metcalfe, Rebecca ;
Lapointe, Emmanuelle ;
Schabas, Alice ;
Lenzen, Marilyn ;
Lynd, Larry D. ;
Traboulsee, Anthony .
BMC NEUROLOGY, 2019, 19 (1)
[5]  
Barker Alexander B, 2019, Int J MS Care, V21, P235, DOI 10.7224/1537-2073.2018-069
[6]  
Barker-Collo Suzanne, 2006, J Neurosci Nurs, V38, P435
[7]   What do we know about the experience of age related macular degeneration? A systematic review and meta-synthesis of qualitative research [J].
Bennion, Amy E. ;
Shaw, Rachel L. ;
Gibson, Jonathan M. .
SOCIAL SCIENCE & MEDICINE, 2012, 75 (06) :976-985
[8]   Experiences of partners of people in the early stages of multiple sclerosis [J].
Bogosian, A. ;
Moss-Morris, R. ;
Yardley, L. ;
Dennison, L. .
MULTIPLE SCLEROSIS JOURNAL, 2009, 15 (07) :876-884
[9]   Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial [J].
Borreani, Claudia ;
Giordano, Andrea ;
Falautano, Monica ;
Lugaresi, Alessandra ;
Martinelli, Vittorio ;
Granella, Franco ;
Tortorella, Carla ;
Plasmati, Imma ;
Radaelli, Marta ;
Farina, Deborah ;
Dalla Bella, Eleonora ;
Bianchi, Elisabetta ;
Acquarone, Nicola ;
Miccinesi, Guido ;
Solari, Alessandra .
HEALTH EXPECTATIONS, 2014, 17 (01) :36-48
[10]   Magnetic Resonance Imaging in Multiple Sclerosis - Patients' Experiences, Information Interests and Responses to an Education Programme [J].
Brand, Judith ;
Koepke, Sascha ;
Kasper, Juergen ;
Rahn, Anne ;
Backhus, Imke ;
Poettgen, Jana ;
Stellmann, Jan-Patrick ;
Siemonsen, Susanne ;
Heesen, Christoph .
PLOS ONE, 2014, 9 (11)