Stigma following acquired brain injury and spinal cord injury: relationship to psychological distress and community integration in the first-year post-discharge

Figures & data

Table 1. Summary of Studies Examining Factors Related to Stigma and Associations with Psychosocial Outcomes after ABI and SCI.

Study	Sample	Design	Stigma Measure	Main Findings
[30], UK	85 TBI participants, TSI Mean = 7.7 years (8.7)	Cross-sectional	Neuro-QOL Stigma Scale; 24 items assessing perception of self and publicly enacted prejudice and discrimination.	Stigma was significantly and positively associated with social anxiety after controlling for demographic and clinical variables including self-reported cognitive problems and depression.
[26], China	200 stroke participants, TSI: <1 year (25%), 1–3 years (26%), 3–5 years (25%) >5 years (25%)	Cross-Sectional	Chinese version of the Stigma Scale for Chronic Illness (SSCI); 24 items assessing perceived (felt) stigma and enacted stigma.	Most participants (>70%) reported experiencing perceived and enacted stigma. Higher stigma was associated with being unemployed, stroke recurrence, lower functional status, higher levels of depression, greater use of avoidance coping strategies and lower levels of perceived support.
[32], US	103 ABI participants (71% TBI), TSI Mean = 12.6 years (10.7)	Cross-sectional	Devaluation-Discrimination Scale; 8 items assessing perceived stigma.	Higher stigma was associated with greater functional limitations and lower acceptance of disability and social self-efficacy. Higher stigma was related to lower social integration, although this was no longer significant when neighbourhood climate and social support networks were entered in the model.
[28], UK	65 ABI participants (63% TBI, 30% stroke, 17% brain tumour), TSI Mean = 12 years (9.0)	Cross-sectional	Anticipated Stigma and Concealment Questionnaire (ASCQ); 10 items assessing potential negative reactions from others due to injury disclosure and concealment.	Higher anticipated stigma and concealment (ASC) was associated with higher levels of social anxiety, social avoidance and loneliness, and lower self-esteem. Anxiety mediated the relationship between ASC and avoidance, loneliness and community activities.
[27], China	65 stroke participants, TSI: 1 month post-stroke	Longitudinal (1 month and 3 months post-stroke)	Stroke Stigma Scale (SSS); 16 items assessing internalised stigma, physical impairment, experience of discrimination and social isolation.	Levels of stigma decreased between 1- and 3-months post-stroke, although this was specific to physical impairment. Higher levels of stigma were associated with higher levels of post-stroke depression and functional disability. Higher levels of stigma were associated with lower social support at 3-months post-stroke.
[33], China	136 stroke participants from community clinics, TSI not specified	Cross-sectional	Chinese version of Stigma Scale for Chronic Illness; 24 items assessing perceived and enacted stigma.	Higher stigma was associated with lower levels of social participation. Participants with greater and more visible stroke impairments (hemiplegia, dysphagia, facial palsy, and aphasia) reported higher levels of stigma. Felt and enacted stigma independently accounted for social participation, controlling for demographics, physical status, depression and social support.
[8], US	225 SCI participants, TSI Mean = 20.54 years (range: 5–35)	Cross-sectional	The Spinal Cord Injury Quality of Life Stigma Short Form. 10 items. assessing SCI-related stigma.	Higher stigma was related to younger age, being single, more recent injuries, longer hospital stay and wheelchair use (power vs manual wheelchair vs no wheelchair). Stigma was positively associated with depression, perceived disability, injustice appraisals, and negatively associated with physical independence and mobility. Stigma mediated relationships between time since injury and self-efficacy, length of rehabilitation stay and injustice appraisals, wheelchair use and self-efficacy, and d) wheelchair type and quality of life.
[17], US	504 TBI participants, TSI Mean = 6.2 years (6.8)	Cross-sectional	TBI-QOL stigma item bank. 14 items assessing perceived stigma.	Higher levels of depression and anxiety were significantly associated with lower levels of community participation through a mediating effect of perceived stigma. Demographics and injury severity were not related to perceived stigma.
[31], West Africa	200 stroke participants, TSI Mean = 2.8 years (2.4)	Cross-sectional	Stigma Scale for Chronic Illness (SSCI-8) Short Form; 8 items assessing internalised and enacted stigma.	Higher stigma was associated with living in an urban setting, more severe stroke symptoms and higher levels of depression. Levels of personal stigma were significantly higher than family stigma and social/community stigma.
[22], China	288 Stroke, TSI: <1 month (33%), ≥1–6 months (34%), ≥6 months (33%)	Cross-sectional	Stigma scale for chronic illness (SSCI); 24 items assessing total stigma, internalised stigma & enacted stigma	Pre-stroke unemployment, longer time since stroke, being cared for by spouse or children, and greater speech and physical impairments were associated with higher stigma. In multivariate analysis, greater reliance on caregivers, depression and poorer functional outcomes were most strongly associated with stigma.

Figure 1. Participant Recruitment Flow Chart.

Table 2. Demographic and Injury Characteristics of the Sample.

	Total sample (n = 110)	ABI (n = 60)	SCI (n = 50)
	M (SD), range/ n (%)
Age (years)	48.20 (16.53), 18–87	44.57 (14.91)	52.10 (17.20)
Sex
Female	35 (32)	20 (33)	14 (28)
Male	76 (68)	40 (67)	36 (72)
Relationship Status
Not in Relationship	46 (41)	24 (40)	18 (36)
In Relationship	65 (59)	36 (60)	32 (64)
Pre-Injury Employment
In competitive employment/studying	75 (63)	41 (68)	33 (66)
Not in competitive employment/studying	45 (38)	19 (32)	17 (34)
Time Since Injury (days)	151.28 (107.10), 24–518	108.56 (85.10)	202.52 (107.02)
Injury type
Traumatic (e.g., fall, traffic accident)	57 (48)	25 (42)	29 (58)
Non-traumatic (e.g., disease, infarct)	63 (52)	35 (58)	21 (42)
Functional Independence
FIM Total Discharge	96.59 (22.61), 31–123	100.68 (21.32)	91.62 (23.43)
FIM Motor subscale	68.08 (22.46), 18–91	77.33 (18.39)	57.38 (22.81)
FIM Cognitive subscale	28.45 (7.19), 8–44	23.35 (6.13)	34.13 (2.72)
Wheelchair use at discharge
No wheelchair	65 (59)	60 (100)	5 (10)
Manual wheelchair	31 (28)	0 (0)	32 (64)
Power wheelchair	14 (13)	0 (0)	13 (26)

Table 3. Descriptive Data on Measures of Stigma, Psychological Wellbeing and Community Integration for the ABI and SCI Participants.

Measure	Total sample	ABI	SCI
	M(SD)	M(SD)	M(SD)
Neuro-QOL stigma subscale
Discharge	^a43.31 (15.29)*	41.02 (16.47)	46.42 (13.20)
3-months post-discharge	43.22 (17.22)	41.88 (18.56)	43.25 (15.88)
12-months post-discharge	^a39.60 (13.69)*	37.62 (13.70)	43.81 (12.74)
DASS-21 total
Discharge	26.49 (20.79)	25.31 (19.90)	24.00 (18.11)
3-months post-discharge	24.39 (21.86)	21.21 (21.41)	25.76 (18.62)
12-months post-discharge	22.11 (19.63)	^b16.53 (18.07)***	^b27.76 (19.61)***
Community Integration Measure
12-months post-discharge	39.95 (5.94)	39.27 (6.47)	40.69 (5.29)

DASS: Depression Anxiety and Stress Scales; *p < 0.017; ***p < 0.001.

Table 4. Demographic and injury-related factors associated with stigma, psychological functioning and community integration.

	Age	Sex	Relationship status	TSI	SDM (Y/N)	FIM Total	FIM Motor	FIM-Cognition	DASS-Discharge	Neuro-QOL-D	Neuro-QOL-3M	Neuro-QOL-12M	CIM-12M
Age	–
Sex	−0.02	–
Relationship	0.29*	−0.03	–
TSI	0.06	0.11	−0.01	–
SDM (Y/N)	−0.14	0.05	−0.03	−0.21*	–
FIM Total	−0.07	0.01	0.14	−0.43***	0.08	–
FIM Motor	−0.14	0.01	0.10	−0.51***	0.23*	0.95***	–
FIM Cognition	0.21	−0.02	0.14	0.26**	−0.45**	0.15	−0.17	–
DASS-Discharge	0.02	−0.04	−0.15	0.09	0.04	−0.06	−0.03	−0.09	–
Neuro-QOL-D	−0.11	−0.06	−0.15	0.14	−0.17	−0.05	−0.07	0.05	0.49***	–
Neuro-QOL-3M	−0.14	−0.14	0.01	0.10	−0.14	0.02	0.04	−0.10	0.39***	0.72***	–
Neuro-QOL-12M	−0.17	−0.06	−0.14	0.21*	−0.17	−0.29**	−0.31**	0.07	0.20	0.59***	0.66***	–
CIM-12	0.04	0.06	0.07	−0.01	−0.22*	0.23*	0.12	0.35**	−0.32**	−0.27*	−0.40***	−0.38***	–

CIM: community integration measure; DASS: depression anxiety and stress scales; Neuro-QOL: Neuro-QOL stigma subscale; SDM: substitute decision maker provided consent (No = 0, Yes = 1); *p < 0.05; **p < 0.01; ***p < 0.001.

Table 5. Differences in levels of stigma and psychological and community functioning according to wheelchair use at discharge.

Measure	No wheelchair	Manual wheelchair	Power wheelchair
	M(SD)	M(SD)	M(SD)	F
Neuro-QOL-Discharge	42.40 (15.69)	45.00 (12.49)	47.64 (14.40)	0.88
Neuro-QOL-3M	41.77 (17.12)	42.04 (15.40)	45.42 (19.00)	0.23
Neuro-QOL-12M	45.55 (17.20)	50.76 (13.40)	60.18 (17.00)	3.93*
DASS-Discharge	28.03 (22.70)	23.75 (19.10)	25.71 (15.10)	0.46
DASS-3M	22.14 (20.80)	30.88 (24.90)	21.33 (18.50)	1.53
DASS-12M	16.00 (17.10)	28.21 (18.40)	33.27 (24.60)	6.11**
CIM-12M	39.43 (6.50)	41.61 (4.79)	38.00 (5.60)	1.90

CIM: community integration measure; DASS: depression anxiety and stress scales; Neuro-QOL: Neuro-QOL stigma subscale; *p < 0.05; **p < 0.01.

Table 6. Hierarchical regression analysis of stigma, functional status and psychological distress at discharge as predictors of community integration at 12-months post-discharge.

	R^2	R^2ch	F/F^ch	B	T	Sr^2 (%)
Step 1	0.24	0.24	5.34***
SDM (Y/N)				−0.16	−1.37	2%
FIM motor				0.19	1.69	3%
FIM cognition				0.28	2.24*	6%
DASS-Discharge				−0.27	−2.45*	7%
Step 2	0.27	0.03	2.97
SDM (Y/N)				−0.22	−1.78	3%
FIM motor				0.18	1.65	3%
FIM cognition				0.28	2.28*	6%
DASS-Discharge				−0.17	−1.41	2%
Neuro-QOL stigma discharge				−0.21	−1.72	3%

p < 0.05*, p < 0.001***; SDM: substitute decision maker provided consent (Yes/No).

Table 7. Hierarchical regression analysis of stigma at 3-months post-discharge as a predictor of community integration at 12-months post-discharge.

	R^2	R^2ch	F/F^ch	B	T	Sr^2 (%)
Step 1	0.22	0.22	4.71***
SDM (Y/N)				−0.05	−0.41	1%
FIM motor				0.24	2.13*	5%
FIM cognition				0.42	3.53***	14%
DASS-21 (3-mths)				−0.15	−1.37	2%
Step 2	0.31	0.08	7.89**
SDM (Y/N)				−0.13	−1.14	1%
FIM motor				0.25	2.40*	6%
FIM cognition				0.36	3.10**	10%
DASS-21 (3-months)				−0.01	−0.06	1%
Neuro-QOL stigma				−0.33	−2.81**	8%

p < 0.05*, p < 0.01**, p < 0.001***; SDM: substitute decision maker provided consent (Yes/No).

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