A meta-ethnographic synthesis of the experiences of stigma amongst people with functional neurological disorder

Figures & data

Figure 1. PRISMA flow diagram. Figures in parentheses indicate the initial search conducted in February 2021. Figures in square brackets represent those conducted in July 2022.

Nine thousand six hundred and eighteen articles identified through databases and one article by hand. After duplicates were removed, 7554 articles were screened, with 7498 excluded. Forty were excluded at full-text stage leaving 16 articles included.

Table 1. Papers Included in the review.

Paper	Aim	Methodology	Participants	Country of study	Data collection	Major findings	CASP
Dosanjh et al. (2020) [32]	To gain insight into how individuals with FMD make sense of their experience from symptom onset through medical evaluation and diagnosis to post-diagnostic adaptation.	IPA	8 (FMD) Gender not reported Age 20–70 s	U.K.	Semi-structured interview	Participants experiences of FMD had a significant impact on relationships with themselves and others. This, in turn, led to difficulties in well-being.	22
Karterud et al. (2010) [33]	Explore the experience of participants who experience a change in diagnoses from epilepsy to FS.	Interpretative analysis based on systematic condensation	10 (FS) 6 female 4 male Age 16–61	Norway	In-depth interview	The manner in which diagnosis is communicated can have an impact on how people understand and adjust to it. More cooperation between services, such as neurology any psychiatry would bridge people’s needs and lead to less feelings of being abandoned.	20
Karterud et al. (2015) [34]	Explored the impact of using a biopsychosocial approach to explain FS diagnosis	Interpretative analysis based on systematic condensation	11 (FS) 11 female Age 14–23	Norway	Semi-structured interview	Being believed was a key factor in coping with the condition.	22
Karterud et al. (2016) [31]	Explored how legitimacy is managed by young people with an FS diagnosis	Thematic analysis	11 (FS—aged 14–24) 11 female Age 14–23	Norway	Interview and follow up	Discovered a relationship between the legitimacy of the illness that participants experienced and the extent to which they participated and recreated socially. Those with more meaningful illness perceptions engaged in more social participation.	22
Loewenberger et al. (2021) [29]	Explored patient perspectives on the experience of diagnosis of FS and their views on terminology	Thematic analysis	13 (FS) 11 female 2 male	U.K.	Semi-structured interview	Identified the benefits of communicating a diagnosis in a manner that facilitates shared understanding and acceptance.	22
McWilliams et al. (2016) [35]	Characterised the experience of children and families with FS.	Thematic analysis	29 families 10 (FS) 4 female 6 male Age 11–19	U.K.	Focus groups and telephone interviews	Young people and families with experience of FS experience significant impairment. Pathways to diagnosis are unclear. Found that framing the diagnosis of FS as “good news” was not experienced positively by children and families.	21
Moyon et al. (2021) [36]	Explored the experiences of adolescents with a diagnosis of conversion disorder in India	Thematic analysis	10 (conversion disorder) 8 female 2 male Age 12–16	India	Semi-structured interviews	Adolescents described struggling with symptoms of their condition. They also described how they appraised their condition and the impact of living with this condition.	22
Nielsen et al. (2020) [37]	Explored the experience of people with FMD	Inductive thematic analysis	11 (FMD) 9 female 2 male Age 21–58	U.K.	Semi-structured interviews	Participants described a lack of understanding in their interactions with healthcare professionals. They experienced significant emotional and physical burden through their condition. Psychological explanations offered by professionals were not satisfactory.	22
Pretorius and Sparrow (2015) [38]	Explored the experience of people in South Africa with an FS diagnosis	Thematic analysis	10 (FS) 8 female 2 male Age 19–55	South Africa	Semi-structured interviews	Described the challenges faced by people with an FS diagnosis and identified some resources that can act as a support.	22
Rawlings et al. (2017) [39]	Explored written accounts of people with an FS diagnosis	Thematic Analysis	19 (FS) 16 female 3 male Age 20–69	U.K.	Written accounts—participants were asked to write; their thoughts and feelings about the condition, a letter to their condition, a letter to their younger selves and about their personal value	Findings highlighted the stigma experienced by people with a diagnosis of FS.	22
Rawlings et al. (2018) [40]	Explored written accounts of people experiencing seizures	Narrative analysis	20 (FS) 17 female 3 male Mean age 39	U.K.	Written accounts—participants were asked to write for 20 min detailing their deepest thoughts and feelings about their condition	Found a difference in narrative between those with epilepsy and those with FS. Noted that those with FS used a “feeling lost” typology when describing their illness.	22
Robson and Lian (2017) [41]	Explored how people with FS experience healthcare encounters.	Thematic analysis	135 (FS) 118 female 14 male 3 transgender Age 18–73	International	Free-text survey responses	Highlighted the negative experiences people with FS have in healthcare encounters. These were explored through a stigma framework	21
Sarudiansky et al. (2017) [42]	Explored the thoughts of people with an FS diagnosis in Buenos Aires, Argentina	Thematic Analysis	5 (FS) 4 female 1 male Age 18–39	Argentina	Semi-structured interviews	Found that these participants frequently adopted somatic frameworks to understand their diagnosis.	21
Tanner et al. (2022) [43]	Explored the experience of adolescents with FS attending school	Content analysis	10 (FS) 10 female Age 12–19	U.S.	Semi-structured interview	Identified that adolescents found it difficult to attend school with FS and identified themes of stress, bullying, accusations of “faking,” feeling left out because of the condition and school management of FS. Identifies an underlying need for further understanding.	22
							17
Thompson et al. (2009) [44]	Provided insight into the experience of receiving a diagnosis of FS from a patient perspective	IPA	8 (FS) 8 female Age 20–60 s	U.K.	Semi-structured interviews	The results indicated that some patients experience distress when the diagnosis is communicated. An ability to integrate the diagnosis into a personal narrative was seen as beneficial.	17
Wyatt et al. (2014) [45]	Explored the experience of receiving a diagnosis of FS and engaging in therapy following this	Thematic analysis	6 (FS) 5 female 1 male Age 29–55	U.K.	Semi-structured interviews	Highlighted the impact of receiving this diagnosis and how this can have a subsequent effect on how people engage with therapy.	18

FMD: functional movement disorder; FS: functional seizures; IPA: interpretive phenomenological analysis; CASP: critical appraisal skills programme, qualitative research appraisal tool.

Figure 2. Diagrammatic representation of the themes.

The top part of the diagram shows what happens when stigma is present. Delegitimization (theme 1) and exclusion (theme 2), coupled with self-beliefs and beliefs about mental health (theme 3) lead to unhelpful ways of coping (theme 4). The lower part of the diagram shows what happens when stigma is absent and support is provided. Experiences are legitimised, people are included and explanations of symptoms are personalised, which leads to more positive coping.

Table

	Search terms
	FND terms (DE Somatization) OR (DE “Somatization Disorder”) OR (DE “Somatoform Disorders”) OR (DE “Conversion Disorder”) OR (DE “Movement Disorders”) OR “functional neurological disorder” OR pseudoseizure OR pseudo-seizure OR “functional movement disorder” OR NEAD OR PNES OR NES OR “attack disorder” OR nonepileptic OR non-epileptic OR “non epileptic” OR pseudoseizure* OR ((seizure* OR convulsion*) N3 dissociative) OR ((seizure* OR convulsion*) N3 hysterical) OR “pseudoepilep*” OR hysteroepilep* OR ((conversion OR psychogenic OR functional) N3 seizure*) OR ((conversion OR psychogenic OR functional) N3 paralysis) OR ((conversion OR psychogenic OR functional) N3 movement) OR FND OR “functional neurologic*” OR “functional movement” OR “functional motor” OR “functional N3 paralysis”
AND	Qualitative research terms (DE “Qualitative Measures”) OR (DE “Qualitative Methods”) OR (DE “Focus Group”) OR (DE “Focus Group Interview”) OR (DE “Interview Schedules”) OR (DE Interviewers) OR (DE Interviewing) OR (DE Interviews) OR (DE “Interpretative Phenomenological Analysis”) OR (DE “Mixed Methods Research”) OR DE (“Grounded Theory”) OR ((personal OR patient OR subjective OR lived OR subjective) N3 experience) OR interview OR qualitative OR “focus group” OR phenomenological OR “phenomenolog*” OR “conversation analysis” OR “thematic analysis” OR “discourse analysis” OR “grounded theory” OR “narrative analysis” OR “mixed method*”

Note. DE is a psycINFO subject heading search term.

Dosanjh M, Alty J, Martin C, et al. What is it like to live with a functional movement disorder? An interpretative phenomenological analysis of illness experiences from symptom onset to post‐diagnosis. Br J Health Psychol. 2021;26(2):325–342.

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Karterud HN, Knizek BL, Nakken KO. Changing the diagnosis from epilepsy to PNES: patients’ experiences and understanding of their new diagnosis. Seizure. 2010;19(1):40–46.

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Karterud HN, Risør MB, Haavet OR. The impact of conveying the diagnosis when using a biopsychosocial approach: a qualitative study among adolescents and young adults with NES (non-epileptic seizures). Seizure. 2015;24:107–113.

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