Changing the culture of care for children and adolescents with functional neurological disorder

被引:39
作者
Kozlowska, Kasia [1 ,2 ,3 ]
Sawchuk, Tyson [4 ,5 ,6 ]
Waugh, Jeff L. [7 ,8 ]
Helgeland, Helene [9 ]
Baker, Janet [10 ,11 ]
Scher, Stephen [2 ,12 ,13 ]
Fobian, Aaron D. [14 ]
机构
[1] Childrens Hosp Westmead, Dept Psychol Med, Westmead, NSW, Australia
[2] Univ Sydney, Med Sch, Sydney, NSW, Australia
[3] Westmead Inst Med Res, Westmead, NSW, Australia
[4] Univ Calgary, Cumming Sch Med, Dept Pediat, Calgary, AB, Canada
[5] Alberta Childrens Prov Gen Hosp, Res Inst, Calgary, AB, Canada
[6] Alberta Childrens Prov Gen Hosp, Calgary, AB, Canada
[7] Univ Texas Southwestern, Dept Pediat, Div Child Neurol, Dallas, TX USA
[8] Univ Texas Southwestern, Div Neurol & Neurotherapeut, Dallas, TX USA
[9] Oslo Univ Hosp, Dept Child & Adolescent Mental Hlth Hosp, Oslo, Norway
[10] Flinders Univ S Australia, Speech Pathol, Adelaide, SA, Australia
[11] Univ Technol Sydney, Sydney, NSW, Australia
[12] Harvard Med Sch, Dept Psychiat, Belmont, MA USA
[13] McLean Hosp, 115 Mill St, Belmont, MA 02178 USA
[14] Univ Alabama Birmingham UAB, Dept Psychiat & Behav Neurobiol, Birmingham, AL USA
关键词
Functional neurological disorder (FND); Functional seizures; Stigma; Children and adolescents; Cultural change; Clinical ethics; PSYCHOGENIC NONEPILEPTIC SEIZURES; PAIN; STRESS; EXERCISE;
D O I
10.1016/j.ebr.2021.100486
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
As members of a multidisciplinary team of professionals who treat children and adolescents with functional neurological (conversion) disorder (FND), we highlight the pressing need to develop an FND-informed culture of care that takes into account recent advances in our understanding of this group of patients. Stories of clinical encounters in health care settings from around the world-told by children and adolescents with FND, their parents, and health professionals-portray an outdated culture of care characterized by iatrogenic stigma, erosion of empathy and compassion within the clinician-patient relationship, and a lack of understanding of FND and its complex neurobiology. After a brief exploration of the outdated culture, we share our counterstories: how we and our colleagues have worked, and continue to work, to create an FND-informed culture in the health systems where we practice. We discuss the therapeutic use of child-friendly language. We also discuss a range of structural, educational, and process interventions that can be used to promote FND-informed beliefs and attitudes, FND-informed clinician-patient encounters, and FND-informed referral processes, treatment pathways, and therapeutic interventions. (C) 2021 The Author(s). Published by Elsevier Inc.
引用
收藏
页数:15
相关论文
共 83 条
[1]   Stability and change in disease prestige: A comparative analysis of three surveys spanning a quarter of a century [J].
Album, Dag ;
Johannessen, Lars E. F. ;
Rasmussen, Erik B. .
SOCIAL SCIENCE & MEDICINE, 2017, 180 :45-51
[2]   The Link Between School Attendance and Good Health [J].
Allison, Mandy A. ;
Attisha, Elliott ;
Lerner, Marc ;
De Pinto, Cheryl Duncan ;
Beers, Nathaniel Savio ;
Gibson, Erica J. ;
Gorski, Peter ;
Kjolhede, Chris ;
O'Leary, Sonja C. ;
Schumacher, Heidi ;
Weiss-Harrison, Adrienne ;
Allison, Mandy ;
Ancona, Richard ;
Holmes, Breena Welch ;
Okamoto, Jeffrey ;
Young, Thomas ;
Chang, Hedy ;
Seeley, Ken ;
Adkins, Susan Hocevar ;
Combe, Laurie ;
Johnson, Veda Charmaine ;
Joshi, Shashank ;
Fekaris, Nina ;
Grant, Linda ;
Kataoka, Sheryl ;
Leonard, Sandra ;
Guinn-Jones, Madra ;
Domain, Stephanie .
PEDIATRICS, 2019, 143 (02)
[3]  
[Anonymous], 2015, RUTTERS CHILD ADOLES, DOI DOI 10.1002/9781118381953.CH72
[4]  
[Anonymous], FEELING WHAT HAPPENS
[5]   Social aspects of life in patients with functional seizures: Closing the gap in the biopsychosocial formulation [J].
Asadi-Pooya, Ali A. ;
Brigo, Francesco ;
Kozlowska, Kasia ;
Perez, David L. ;
Pretorius, Chrisma ;
Sawchuk, Tyson ;
Saxena, Aneeta ;
Tolchin, Benjamin ;
Valente, Kette D. .
EPILEPSY & BEHAVIOR, 2021, 117
[6]  
Baker J, 2016, HAND CLINIC, V139, P389, DOI 10.1016/B978-0-12-801772-2.00034-5
[7]   Psychogenic dysphonia: Peeling back the layers [J].
Baker, J .
JOURNAL OF VOICE, 1998, 12 (04) :527-535
[8]  
Baker J., 2017, Psychosocial perspectives on the management of voice disorders. Implications for clients options and strategies for clinicians
[9]   Management of functional communication, swallowing, cough and related disorders: consensus recommendations for speech and language therapy [J].
Baker, Janet ;
Barnett, Caroline ;
Cavalli, Lesley ;
Dietrich, Maria ;
Dixon, Lorna ;
Duffy, Joseph R. ;
Elias, Annie ;
Fraser, Diane E. ;
Freeburn, Jennifer L. ;
Gregory, Catherine ;
McKenzie, Kirsty ;
Miller, Nick ;
Patterson, Jo ;
Roth, Carole ;
Roy, Nelson ;
Short, Jennifer ;
Utianski, Rene ;
van Mersbergen, Miriam ;
Vertigan, Anne ;
Carson, Alan ;
Stone, Jon ;
McWhirter, Laura .
JOURNAL OF NEUROLOGY NEUROSURGERY AND PSYCHIATRY, 2021, 92 (10) :1112-1125
[10]  
Baldwin J., 1962, NEW YORK TIMES