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

Abstract

Purpose

This study aimed to compare stigma levels after acquired brain injury (ABI) and spinal cord injury (SCI) during the first 12-months post-discharge and investigate relationships between stigma, psychological distress and community integration.

Methods

110 adults with ABI (55%) or SCI (45%) were recruited from brain and spinal cord injury inpatient rehabilitation units of a tertiary healthcare facility. They were administered Neuro-QOL Stigma subscale and Depression Anxiety and Stress Scales (DASS-21) at discharge, 3-months and 12-months post-discharge, and Community Integration Measure at 12-months post-discharge.

Results

Stigma levels did not significantly differ between individuals with ABI and SCI. However, stigma significantly decreased between discharge and 12-months post-discharge for the total sample. Stigma was positively associated with psychological distress at discharge and 3-months post-discharge, but not at 12-months post-discharge. Lower functional status and power wheelchair use were associated with higher stigma at 12-months post-discharge. Stigma at 3-months post-discharge predicted community integration at 12-months post-discharge, controlling for psychological distress and functional status.

Conclusion

Experience of stigma in the first few months post-discharge may negatively impact individuals’ community reintegration. The early post-discharge period may be a pivotal time for supporting individuals to explore disability and injury-related appraisals and enhance connection to their community.

IMPLICATIONS FOR REHABILITATION

• Lower functional status and use of a power wheelchair after acquired neurological injury may increase the experience of stigma.

• Individuals with acquired brain injury or spinal cord injury who perceive high levels of stigma in the first few months post-discharge are more likely to experience poorer long-term community integration.

• The first few months post-discharge represent an important phase for health professionals to support individuals to explore their beliefs regarding disability and injury-related self-appraisals and enhance connection to their community.

Keywords:

• Stigma
• acquired brain injury
• spinal cord injury
• psychological well-being
• community integration

Introduction

Social and community participation has been found to positively contribute to the quality of life following neurological injury [1–4], with social isolation, exclusion, and discrimination leading to psychological distress [5–9]. Research shows that people with neurological injury strongly value having a sense of citizenship and feeling part of their community [7,10,11]. However, people with spinal cord injury (SCI) and acquired brain injury (ABI) can experience functional impairments and negative societal attitudes or stigma that limit their social functioning and community participation. Stigma broadly refers to the devaluation of an individual by society due to their membership in a particular group that is understood as ‘other’ [12,13].

Changes in activity and role participation can place individuals with SCI and ABI at risk of becoming socially disconnected or isolated and experiencing stigma [7,8,11]. Diverse barriers to community reintegration can lead to feelings of exclusion and discrimination and have serious negative implications for health and well-being [5,9]. In addition to environmental and physical access barriers, people with SCI have been found to experience a “disabling society” whereby they feel stigmatised and discriminated against, particularly in terms of employment and education opportunities [7]. Although physical and service barriers are most frequently reported by people with ABI after hospital discharge, attitudinal barriers related to negative social responses and discrimination have been found to have the most adverse impact on interpersonal relationships [14]. Over time, individuals can experience a decline in community reintegration in terms of independence, mobility, occupation and social integration, and an associated reduction in psychological well-being [5].

There is growing evidence to suggest that stigma significantly impacts community integration for individuals with SCI and ABI [15–17]. Individuals commonly report feeling misunderstood and negatively evaluated on the basis of their injury when interacting with others [18–21]. Some reports suggest that up to 80% of individuals experience some degree of stigma following a stroke [22]. More recently, the discussion has explored stigmatisation as a cumulative, social process that may limit life opportunities, such as access to employment, and increase the risk of developing stress-related illnesses, particularly for those with disease-associated stigma [23]. Some authors have distinguished between enacted, perceived and internalised stigma [24]. Enacted stigma refers to the experience of discrimination or overt behaviour of others, that results in stigmatising experiences for individuals [24]. Perceived or felt stigma refers to the fear of enacted stigma or being discriminated against, which arises from awareness of stigmatising views and beliefs by society [17,25]. In comparison, internalised or self-stigma occurs when individuals internalise the prejudices of others or apply negative stereotypes to themselves [17]. Due to the interrelatedness of these types of stigma, most measures assess stigma as a global construct [26,27].

Assessing stigma early in the post-injury adjustment phase is important to gauge individuals’ initial experiences and expectations of how others will appraise or react to them following discharge [8]. Such expectations have been found to influence coping reactions or strategies, including the use of concealment (i.e., strategies to hide or mask one’s disability) or social avoidance to reduce the threat of negative social evaluation [28,29]. Accordingly, early perceptions of stigma have the potential to influence individuals’ sense of connection to their community and long-term social functioning.

A review of studies on ABI or SCI employing validated measures of stigma (see Table 1), identified that the majority were cross-sectional and involved individuals with more long-term injuries (> 2 years post-injury). Overall, these studies found that higher levels of stigma were related to greater use of avoidant coping strategies [26], general anxiety and social anxiety [17,22,28,30,31], loneliness, and low-self-esteem [28]. Greater stigma was also associated with smaller social networks and lower levels of social participation [32,33], and community integration [17,27,33]. In a large study involving individuals with traumatic brain injury (n = 504), Poritz et al. [17] identified that stigma mediated the relationship between depression and anxiety and levels of community participation.

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.

Notably, several studies found that lower functional status or more severe disability was associated with higher levels of stigma [8,22,26,31–33]. In people with stroke (n = 136), Lu et al. [33] found that participants with more visible physical impairments (i.e., hemiplegia, dysphagia, facial palsy, and aphasia) reported higher levels of stigma. In a study on stigma after SCI (n = 225), Monden et al. [8] also reported that greater disability and reduced physical independence and mobility were significantly related to higher levels of stigma. There is some evidence to suggest that the relationship between functional status and stigma changes over time. In their longitudinal study, Hu et al. [27], found a significant reduction in stigma related to physical impairment between 1- and 3-months post-stroke (n = 65); however, there were no significant changes in internalised stigma, experience of discrimination, and social isolation. Conversely, Zhu et al. [22] found that internalised stigma was significantly higher in individuals with greater time since stroke (i.e., ≥ 6 months vs < 6 months), suggesting that levels of self-stigma may increase with time living in the community. Further, individuals with speech and physical impairment reported higher levels of internalised and total stigma.

ABI has been referred to as a “hidden” disability due to the less observable cognitive, behavioural and emotional effects [34]. While physical and speech-related impairments may be observable, cognitive and behavioural changes are often poorly understood by the public who may either overestimate or underestimate their effects [35]. Hagger and Riley [28] found that individuals with ABI often used concealment or elected not to disclose their injury in social contexts due to anticipated stigma. In contrast, the physical disability associated with SCI is usually visible, particularly for individuals using physical aids such as wheelchairs. Monden et al. [8] found that stigma levels were higher for wheelchair users than non-wheelchair users and that those using power wheelchairs reported higher stigma than those using manual wheelchairs. However, research has yet to compare levels of stigma experienced after ABI and SCI, both of which are leading causes of acquired neurological disability in adults. Investigation of stigma experienced by these populations is important for understanding the impact of specific injury-related factors on stigma, such as functional status (i.e., motor versus cognitive impairment) and the use of physical aids such as wheelchairs. Further, although it is well established that stigma is related to lower functional status and psychological distress [17,22], research is yet to determine whether stigma during the early post-adjustment period uniquely predicts psychosocial adjustment over the longer term.

Study aims

The first study aim was to compare levels of stigma in individuals with ABI and SCI at the time of discharge and 3- and 12-months post-discharge. It was hypothesised that individuals with SCI would experience significantly higher levels of stigma at each time point than individuals with ABI. It was further hypothesised that the use of a wheelchair and poorer functional status would be significantly associated with higher levels of stigma. The second aim was to investigate the relationship between early stigma and community integration. It was hypothesised that levels of stigma at discharge and 3-months post-discharge would be significantly associated with lower community integration at 12-months post-discharge, controlling for functional status and psychological well-being.

Methods

Design

This study employed a prospective longitudinal design with participants assessed at discharge from specialist inpatient rehabilitation and at 3-months and 12 months post-discharge. Assessments were conducted in person just prior to discharge and via telephone at 3- and 12 months post-discharge.

Participants

Participants were recruited from specialist inpatient brain injury and spinal injury rehabilitation units of a large tertiary healthcare facility over a 9-month period (July 2019 to March 2020) as part of a broader project on service access and rehabilitation outcomes (Improving system transitions and access for complex rehabilitation populations: Trajectories of Rehabilitation across Complex Environments (TRaCE 2.0) [36]. Participants were screened by treating professionals according to the following criteria: a new diagnosis of ABI or SCI, aged ≥18 years, able to provide informed consent (or consent provided by a substitute decision maker on behalf of the participant) and adequate communication skills to complete a telephone-based assessment independently or with assistance from their substitute decision-maker (SDM). All participants with an SDM were involved in answering questionnaire items, although were assisted to varying degrees by either their SDM or a clinician (e.g., reading out aloud items, re-wording or simplifying language as needed). For the purposes of the present study, participants also had to have completed the measure of stigma at discharge. Patients admitted to the brain or spinal injury rehabilitation units for reasons other than acute rehabilitation for a new ABI or SCI were excluded.

Measures

Socio-demographic and injury-related variables were retrieved from hospital electronic medical records and included participants’ functional status at discharge based on FIM scores.

Functional independence measure (FIM)

The FIM is a well-validated measure of functional status commonly used to indicate the severity of disability in the context of rehabilitation [37,38]. Comprised of 18 items, the FIM has two subscales assessing motor function (13 items assessing self-care, sphincter control, transfers, and locomotion) and cognitive function (5 items assessing communication and social cognition). Items are rated on a 7-point scale ranging from 1 (total assistance) to 7 (complete independence). Higher scores indicate greater independence and less physical and cognitive disability [37]. The FIM was completed by treating professionals just prior to discharge.

Neuro-QOL stigma subscale

Stigma was measured using the stigma subscale of the Neuro-QOL measure [39], which was adapted from the Stigma Scale for Chronic Illness (SSCI) [40]. The Stigma subscale was validated as part of the Neuro-QOL item bank for adults with the neurological disorder [41]. The 24-item stigma subscale assesses negative perceptions of self and prejudice and discrimination from the public as a result of an injury. Example items include: “Because of my injury, some people avoided me,” “Because of my injury, I felt embarrassed in social situations,” and “Because of my injury, I was treated unfairly by others” [40,p.595]. Items are rated on a 5-point Likert scale, as follows: 1 (Never), 2 (Rarely), 3 (Sometimes), 4 (Often), and 5 (Always) [39]. Items are summed with higher total scores reflecting higher levels of stigma. High levels of internal consistency (α = 0.91) and test–retest reliability (r = 0.82) have been demonstrated in samples of patients with a range of neurological problems (e.g., stroke, epilepsy, Parkinson’s disease) [40]. Curvis et al. [30] reported excellent internal consistency (α = 0.91) in a TBI sample and convergent validity with a measure of social anxiety. In the current study, internal consistency ranged from good to excellent for the SCI and (α = 0.87) and ABI (α = 0.93) samples.

Depression anxiety and stress scales (DASS-21)

The DASS-21 [42] is a self-report questionnaire that contains three 7-item scales assessing symptoms of depression, anxiety, and stress over the past week. Items are rated on a 4-point Likert scale (0 = Did not apply to me at all; 3 = Applied to me very much or most of the time), with higher scores indicating greater distress. An example item includes: “I couldn’t seem to experience any positive feeling at all.” Item scores are tallied and doubled for each subscale (range: 0–42), to enable cut-offs based on the original 42-item DASS to be applied. Reliability and validity of the DASS-21 have been demonstrated in individuals with SCI (α = 0.75–0.90) [42] and ABI (α = 0.85–0.93) [43]. In the current study, the total DASS-21 score was used as a global index of affective distress [44]. Internal consistency was excellent for the current ABI (α = 0.90) and SCI samples (α = 0.93).

Community integration measure (CIM)

The CIM [11] was administered at 12-months post-discharge to measure individuals’ community adjustment or perceived connections to their community. The 10-item scale assesses four domains including: general assimilation (“I feel that I am accepted in this community”), support (“There are people I feel close to in this community”), occupation (“I have something to do in this community during that main part of my day that is useful and productive”) and independent living (“I can be independent in this community”) [11,p.434]. Participants rate each item on a 5-point Likert scale (1 = “always disagree”; 5 “always agree”). Scores are summed with higher total scores representing a higher level of community integration. The CIM has demonstrated sound psychometric properties in individuals with SCI [45,46] and ABI [47]. Internal consistency was good for both the ABI (α = 0.87) and SCI (α = 0.83) samples.

Procedure

Ethical clearance for the project was obtained from the Metro South Hospital and Health Service Human Research Ethics Committee (HREC/2019/QMS/50271) and Griffith University Human Research Ethics Committee (2019/456). Participants or their SDMs provided written informed consent. Questionnaires were completed in-person prior to hospital discharge and via telephone at 3- and12-months post-discharge as part of a broader set of questionnaires assessing service access and rehabilitation outcomes [36].

Data analysis

Data screening and analysis were conducted using SPSS (Version 28). Data were screened for missing data and relevant assumptions for parametric analysis. Analyses were conducted to compare demographic, injury-related, and baseline psychological characteristics of individuals who have retained in the study at 12-months follow-up with the participants lost to follow-up. All assumptions were satisfied, except for normality for FIM total, FIM motor and DASS-21 at 12-months post-discharge which were significantly skewed (±1.96). Square root transformations conducted to address non-normality for the FIM scores and DASS-21 data did not alter the significance of results and therefore results based on the original variables are reported. A mixed two-way ANOVA (group x time) was used to compare levels of stigma between the groups (ABI vs SCI) and across the three time points, with posthoc comparisons conducted with Bonferroni corrections for significant interactions or main effects. Pearson product-moment correlation was used to examine associations between demographic and injury characteristics and stigma, psychological, and community integration outcomes. One-way ANOVA was used to examine differences in levels of stigma and psychological distress according to wheelchair use. In addition to the hypothesis, univariate analyses guided the selection of variables (e.g., covariates) entered in the hierarchical regressions of predictors of community integration. Collinearity statistics indicated acceptable levels of multicollinearity for variables in the regression.

Results

Sample characteristics

In total, 261 individuals with ABI and SCI were screened for eligibility over the 9-month period (July 2019–March 2020). As shown in Figure 1, 110 participants with ABI (n = 60) and SCI (n = 50) completed relevant measures at discharge. Twenty-five participants (all with ABI) had an SDM and were assisted by this person or a clinician to answer questions. Twenty-one participants (19%) were lost to follow-up at 3-months post-discharge and a further two were lost to follow-up at 12-months post-discharge. A comparison of participants retained at 12-months (n = 87) and those lost to follow-up (n = 23) identified no significant differences in demographic characteristics, wheelchair use, or levels of stigma and psychological distress at discharge (p > 0.05). However, individuals lost to follow-up had significantly lower functional status at discharge (FIM total M = 89.22, SD = 26.1) than those retained in the study (M = 99.11, SD = 20.9, t = −1.99, p = 0.049).

Figure 1. Participant Recruitment Flow Chart.

Table 2 summarises the demographic and injury-related characteristics of the sample. Participants were aged 18–87 (M = 48.20, SD = 16.53) and were predominantly male (68%) and in a relationship (59%). Time since injury varied between 24 and 518 days (M = 151.28, SD = 107.10) and discharge functional status (FIM Total) was also variable (M = 96.59, SD = 22.61; range: 31–123). Most causes of ABI were non-traumatic (58%, e.g., stroke and benign brain tumour), whereas most causes of SCI were traumatic (58%), mainly from traffic accidents and falls. In terms of the main form of ambulation, individuals with SCI were typically discharged using a manual wheelchair (64%) or power wheelchair (26%).

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)

Differences in stigma and psychological distress over 12-months post-discharge

Descriptive data for measures of stigma, psychological distress and community integration are presented in Table 3. Results of a mixed two-way ANOVA revealed no significant main effect of group (F = 2.21, p = 0.14, η_p²= 0.03) or group by time interaction (F = 0.48, p = 0.62, η_p²= 0.01) for stigma. However, there was a main effect of time (F = 4.13, p = 0.018, η_p²= 0.06). Post-hoc comparisons with a Bonferroni adjustment for multiple comparisons indicated a significant decrease in stigma for the total sample between discharge (M = 43.31, SD = 15.29) and 12-months post-discharge (M = 39.60, SD = 13.69, p < 0.017, η_p²= 0.07), whereas there were no significant differences in stigma between discharge and 3-months post-discharge (M = 43.22, SD = 17.22, F = 0.25, p = 0.617) or between 3-months and 12-months post-discharge (p = 0.058, η_p²= 0.05). For psychological distress, there was a significant group by time interaction (F = 3.44, p = 0.038, η_p²= 0.09). Pairwise comparisons indicated that levels of psychological distress were similar between individuals with ABI and SCI at discharge (t = 0.28, p > 0.05, d = 0.05) and 3-months post-discharge (t = 1.51, p > 0.05, d = 0.32), but were significantly higher for individuals with SCI at 12-months post-discharge (t = 3.66, p<.001, d = 0.79). There were no significant differences in levels of community integration at 12-months between participants with ABI and SCI (t = 1.11, p = 0.28, d = 0.24)

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.

Factors associated with levels of stigma in the first 12 months post-discharge

Correlation analysis identified that psychological distress at discharge was positively associated with levels of stigma at discharge (r = 0.49, p < 0.001) and 3-months post-discharge (r = 0.39, p < 0.001). However, no other variables were significantly related with stigma at these timepoints (see Table 4). Level of stigma at 12-months was positively associated with time since injury (r = 0.21, p < 0.05) and negatively associated with functional status at discharge (total FIM and FIM motor, r = −0.29–0.31, p < 0.01). Levels of stigma were not significantly associated with psychological distress at 12-months post-discharge (r = 0.20, p > 0.05). Higher levels of stigma at all three timepoints were significantly related to lower community integration at 12-months post-discharge (r = −0.27–0.40, p<.05). Community integration was significantly higher for those who did not have a SDM (r = −0.22, p < 0.05) and was positively associated with better overall functional status (r = 0.23, p < 0.05) and cognitive status (r = 0.35, p < 0.01) at discharge.

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.

As shown in Table 5, levels of stigma and psychological distress did not significantly differ according to wheelchair use at discharge or 3 months post-discharge. However, at 12-months post-discharge, individuals using a power wheelchair reported higher levels of stigma (t = −2.61, p = 0.012, d = 0.87) and psychological distress (t = −2.77, p = 0.007, d = 0.93) than individuals not using a wheelchair. There were no significant differences in levels of stigma (t = −1.65, p =.10) or psychological distress (t = −0.70, p = 0.48) between manual and power wheelchair users. Although stigma levels did not differ between participants using manual wheelchairs and those not using wheelchairs (t = −1.59, p = 0.12), individuals using manual wheelchairs reported higher levels of psychological distress at 12-months post-discharge than non-users (t = −2.92, p = 0.005, d = −0.70). Notably, the between-group differences in levels of stigma according to wheelchair use were no longer significant when controlling for functional status (FIM total), due to the interrelatedness of wheelchair use and functional status. Levels of community integration at 12-months did not significantly differ according to wheelchair use (F = 1.90, p =.16, η_p² = 0.04).

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.

Early stigma as a predictor of community integration at 12-months post-discharge

Hierarchical regression analyses were conducted to examine the effects of early stigma on community integration at 12-months post-discharge. Covariates in the model included FIM motor, FIM cognition, DASS (at Discharge or 3 months post-discharge), and SDM. The first model examined whether the level of stigma at discharge (Step 2) significantly predicted community integration after controlling for SDM (Y/N), functional status, and psychological distress at discharge in Step 1. As shown in Table 6, stigma at discharge did not account for significant additional variance in community integration after adjusting for SDM, functional status and psychological distress (R² change = 0.03, p = 0.09). Only FIM cognition accounted for significant unique variance (6%) in the final model.

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).

The second regression model examined whether stigma at 3-months post-discharge predicted community integration at 12-months post-discharge after controlling for SDM (Y/N), functional status (FIM total & cognition) and psychological distress at 3-months post-discharge. As shown in Table 7, stigma at 3-months post-discharge contributed significant unique variance in the level of community integration in the second step (R² change = 0.08, p = 0.007). FIM motor, FIM cognition and stigma at 3-months post-discharge each contributed significant unique variance (6–10%) in the final model.

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).

Discussion

This study investigated levels of stigma in the first 12-months post-discharge in individuals with an acquired neurological injury secondary to an SCI or ABI. Levels of stigma significantly decreased between discharge and 12-months post-discharge for the total sample. Early levels of stigma at discharge and 3-months post-discharge were associated with psychological distress at the same time points, whereas stigma in the longerterm (12-months post-discharge) was associated with early functional status and wheelchair use. Individuals using a power wheelchair reported the highest levels of stigma and psychological distress, although differences in the level of stigma were no longer significant after controlling for functional status. While stigma at discharge did not uniquely predict community integration, stigma levels after a short period of time in the community (3-months post-discharge) predicted community integration in the longer term after controlling for functional status and psychological distress.

Contrary to our first hypothesis, individuals with SCI did not report significantly higher levels of stigma than individuals with ABI, although stigma was somewhat higher for individuals with SCI at each time point. Stigma levels significantly decreased between discharge and 12-months post-discharge for the total sample. The factors associated with stigma also varied across time points, with psychological distress found to be related to stigma at both discharge and 3-months post-discharge, whereas stigma at 12-months post-discharge was associated with greater time since injury, power wheelchair use, and lower functional status in univariate analysis. These findings suggest that during the early adjustment phase, anticipating and/or experiencing negative evaluation from others (e.g., self-consciousness, embarrassment, feeling left out, worrying about being a burden) is more closely associated with psychological distress than objective levels of disability. Riley et al. [29] found that individuals with ABI commonly perceived threat in “dealing with people” which was associated with avoidance of social situations, anxiety, and low self-esteem. Hagger and Riley [28] similarly found that anticipated stigma and concealment of disability were related to social anxiety and avoidance.

It is possible that stigma might be somewhat lower for people with ABI due to the lower visibility of their disability and less use of physical aids. Consequently, they have more options to use selective disclosure as compared to individuals with more visible disabilities, such as those using physical aids. Riley and Hagger [48] found that individuals with ABI regulated their levels of disclosure to people outside of immediate family and close friends. Reasons for not disclosing their injury included a desire to avoid negative reactions from others, wanting to fit in, and situational perceptions that the disadvantages of disclosure outweigh the benefits. Conversely, they elected to disclose their injury to obtain practical and emotional support from others, for emotional release, to account for their behaviour and to share their experiences with others.

In partial support for our second hypothesis, power wheelchair use and poorer functional status were significantly associated with higher levels of stigma at 12-months post-discharge in univariate analysis. Early levels of stigma were associated with psychological distress, whereas stigma in the longer-term (12-months post-discharge) was more closely associated with functional status and wheelchair use. Such findings concur with prior cross-sectional studies conducted with people with more long-term ABI and SCI, which found consistent associations between poorer functional status and higher stigma levels [8, 22, 26, 31–33]. The current findings extend upon previous research by indicating that early psychological distress could sensitise individuals to perceiving negative reactions from others. However, in the longer-term greater physical disability and visible impairment (e.g., use of a power wheelchair) has a stronger association with stigma than psychological distress. This might also suggest that individuals with acquired neurological injuries feel less distressed by negative social reactions over time. Hu et al. [27] found that stigma levels related to physical impairment decreased in the first few months post-stroke. Yet, Zhu et al. [22] found that internalised stigma was higher in individuals with a longer time since their stroke (i.e., ≥ 6 months vs < 6 months), and those with poorer functional outcomes who had a greater reliance on caregivers.

Consistent with Monden et al. [8], we found that power wheelchair users experienced higher levels of stigma than non-wheelchair users at 12-months post-discharge, although this was not the case for manual wheelchair users. Due to the interrelatedness of wheelchair use and functional status (i.e., those using a power wheelchair had lower functional status than those using a manual wheelchair or no wheelchair) some caution is needed in interpreting these findings. The lack of differences between manual wheelchair users and non-users in the current study may relate to level of acceptance or meaning associated with use. Barker et al. [49] found that individuals with stroke who used a wheelchair varied along a continuum of acceptance in terms of being reluctant, grateful or having internal acceptance of the wheelchair. Those with reluctant acceptance viewed the wheelchair as a necessity for which they had no other alternative, whereas those with grateful acceptance perceived the wheelchair as an asset that enabled their mobility and made life easier. Those with internal acceptance viewed the wheelchair as a part of themselves in addition to an asset and a necessary part of their daily routine. The wheelchair was accepted as a substitute for the loss of functionality of their physical bodies, providing strength, confidence and mobility; “So the wheelchair is a part of me now” [49,p.225]. Individuals using manual wheelchairs in the current study were often able to walk or use other physical aids in more confined spaces, whereas those using powered wheelchairs required these for travel in the community. Importantly, wheelchair use was not a significant predictor of community integration. Therefore, despite experiencing higher levels of stigma, this did not reduce community connection for power wheelchair users.

Interestingly, stigma levels at 3-months post-discharge, but not at discharge, predicted level of community integration after controlling for functional status and psychological distress. The first few months post-discharge can be a pivotal time for the development of self-awareness whereby individuals learn about their functional limitations through experiencing challenges on real-life tasks and social feedback [50]. The current findings indicate that the first few months of community life are also significant for individuals forming a sense of how others perceive and react to their injury, which has implications for their community integration over the longer term. Individuals’ pre-existing beliefs and awareness of stigmatising views regarding disability are likely to shape their experiences of stigma [24] in addition to observing others’ reactions during social interactions. Research suggests that changes in social identity experienced after SCI and ABI are influenced by social group memberships [7, 51, 52]. Mahooti et al. [7] found that individuals with SCI who experienced a sense of “disabling society” were more likely to withdraw socially to avoid negative reactions from the general public. After ABI, those who try to conceal or dissociate from their injury to reduce perceived stigma are found to experience poorer psychological and community adjustment [28, 53], potentially because they limit their opportunity to relate to others, obtain support and develop adaptive coping strategies. Conversely, individuals who identify with their injury and form new group memberships, for example through volunteering or invited speaker engagements, are more likely to experience positive identity changes (e.g., viewing oneself as a “survivor” or “role model”) and feel connected to their community [53, 54].

In terms of clinical implications, our findings suggest that individuals with lower functional status and those using a power wheelchair (only relevant to SCI in the current sample) are most at risk of experiencing stigma in the first 12-months post-discharge. However, irrespective of functional status, individuals who perceive high levels of stigma in the first few months post-discharge are more likely to experience poor community integration in the longerterm. Therefore, the first few months post-discharge represent an important phase for health professionals to support individuals to explore their beliefs regarding disability and injury-related self-appraisals and enhance their connection to their community. Given the finding that the FIM cognitive subscale (i.e., clinician ratings of receptive and expressive communication, social interaction, memory, and problem-solving) independently predicted community integration, such support may be particularly important for individuals with poorer cognitive status at discharge. Positive self-appraisals and identity maintenance may be promoted through interventions that support individuals to resume valued pre-injury activities and social roles. Alternatively, where this is not possible, clinician-facilitated or family-based support to join new social groups and activities may help to foster positive identity reconstruction [55]. Examples of intervention approaches that promote social connection include peer-support and mentoring programs, group project-based interventions, and community connection programs [1, 56–61]. In addition to individual-level interventions, empowering people with disability to assist in the design and implementation of stigma reduction programmes at institutional, community and structural levels is increasingly being advocated [62]. Similarly, involvement of individuals with lived experience in public campaigns (e.g., through digital media) that serve as “counter stories” by aiming to foster positive social identities of people with ABI and SCI may help to change negative societal views and enhance their community integration [63].

Limitations

Several limitations related to sampling and measurement within this study are important to acknowledge. First, individuals with lower functional status were less likely to be retained in the study at 12-months post-discharge. This sample bias may affect generalisability of the findings to the broader ABI and SCI populations. Second, functional status and wheelchair use were only measured at discharge and therefore improvements in functional status and ambulation in the first 12-months post-discharge could not be examined or accounted for in analyses. Third, although the Neuro-QOL stigma scale was developed for use in diverse neurological populations, the relevance of items for ABI and SCI populations may vary. For example, no items refer to perceptions of wheelchair use or need for support with self-care. Therefore, further research employing stigma measures developed specifically for people with SCI (e.g., SCI-QOL stigma item bank and short form) [15] is recommended. It is also recommended that future studies examine self-appraisals of wheelchair use (e.g., acceptance and meaning) as a potential moderator of the relationship between wheelchair use and stigma. Many participants in this study accessed specialist ABI and SCI community rehabilitation services and disability support services in the first 12 months post discharge, although service use was not comprehensively documented. Further research investigating the impact of these types of services on individuals’ experience of stigma warrants investigation. Finally, the focus of the current investigation was on statistically significant differences in outcome measures. It is recommended that future research examine clinically meaningful differences in stigma and psychological distress between diagnostic groups and over time.

Conclusion

This study identified that after an acquired neurological injury, individuals with poorer functional status and those using a power wheelchair are most at risk of experiencing stigma at 12-months post-discharge. However, irrespective of functional status, individuals who experience higher levels of stigma in the first few months post-discharge are more likely to have poorer community integration in the longer term. The first few months after discharge represent an important opportunity for health professionals or community-based programs to support individuals who acquire neurological injury to explore their beliefs about disability and injury-related self-appraisals and to enhance their connection to their community.

Further research exploring the role of disability and injury-related appraisals (e.g., acceptance and meaning of wheelchair use) is recommended, along with evaluation of individual-level and broader societal interventions addressing stigma.

Acknowledgements

The authors would like to thank all participants for their involvement in the study. We acknowledge the early input of Dr Melissa Legg and Professor Michele Foster in this project.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This project was funded by the Metro South Health Research Support Scheme. We also acknowledge the funding and support from the Motor Accident Insurance Commission.