The social consequences of stigma-related self-concealment after acquired brain injury

Abstract

Social relationships often decline after brain injury. Although much of this is due to psychosocial impairments caused by the injury, the reactions to the injury of others in the person's wider social network, along with the response of the person with the injury to those reactions, also need to be considered. Anxiety about stigmatising reactions from others may lead some to conceal information about their brain injury. This study investigated some of the social consequences of such concealment. Sixty-five participants with acquired brain injury completed the Anticipated Stigma and Concealment Questionnaire, the Social Avoidance and Distress Scale, the UCLA Loneliness Scale, the Rosenberg Self-Esteem Scale, the Social Integration subscale of the Community Integration Questionnaire, and the Enacted Social Support Questionnaire. As hypothesised, concealment was associated with social anxiety, social avoidance, loneliness and lower self-esteem; and anxiety mediated the impact that concealment had on avoidance, loneliness and reduced community activity. However, contrary to expectation, concealment was not associated with reduced use of social support. Concealment may have negative consequences, but inappropriate disclosure can also be harmful. Services should support individuals to make optimal decisions about disclosing information about the brain injury and also help them address psychological barriers to disclosure.

Experiences that challenge self-identity following traumatic brain injury: a meta-synthesis of qualitative research

“…This should be part of a more general effort in rehabilitation to help people address withdrawal and avoidance, and the threat-related anxieties that underlie this [81][82][83].…”

“…The valuing component implies dealing at a societal level with the stigma often faced by people with a TBI [97]. This may help address the damaging impact of stigma on self-identity as well as other negative consequences such as social withdrawal and avoidance [83]. There is also a need to help people with a TBI to deal with the stigma they face.…”

‘Lonely in my head’: The experiences of loneliness in individuals with brain injury

“…Concealment of one’s brain injury, reluctance to disclose, and internalized stigma have been explored and detailed in previous literature (Hagger and Riley, 2019; Shortland & Douglas, 2010). The majority of evidence about the consequences and motivations associated with concealment of an ABI is qualitative in nature.…”

“…Participants cited concerns about the reactions of others (anticipated stigma), and their sense of shame and embarrassment (internalized stigma) as reasons for concealing information about their ABI (Shortland & Douglas, 2010; Simpson, Mohr, & Redman, 2000). In relation to the consequences of this concealment, participants from previous studies outlined that concealment and threat of exposure lead to stress in social situations (Crisp, 1993; Hagger and Riley, 2019), and that concealment can be a barrier in friend formation and maintenance, social anxiety, loneliness, and lower self‐esteem (Hagger and Riley, 2019; Shortland & Douglas, 2010). Indeed, in the current study, participants expressed that concealment or ‘papering over the cracks’, acted as a barrier to authentic connection within interactions and increased their tendency to socially isolate themselves or experience feelings of loneliness.…”

Lonely But Not Alone: Neuroticism Mediates the Relationship Between Social Network Size and Loneliness in Individuals With Traumatic Brain Injury

“…Participants are asked to respond to the statements using a 4-point Likert scale that ranges from Never (1) to Always (4), with higher scores indicative of greater loneliness. The UCLA Loneliness Scale is highly reliable and valid (for further information, see Russel, 1996), and has been used in TBI samples (Hagger & Riley, 2017;Struchen et al, 2011).…”