Implicit Bias and Microaggressions in the Care of People With Prolonged Disorders of Consciousness: Bridging Medicine, Disability Studies, and Family Advocacy

ABSTRACT

Background

Prolonged Disorders of Consciousness (PDOC), including unresponsive wakefulness syndrome and minimally conscious state, present persistent challenges in clinical assessment and long‐term care. Although behavioral observation remains the primary basis for detecting signs of consciousness, interpretation of such observations often depends on clinical judgment and contextual information provided by caregivers. In some cases, family caregivers may detect subtle signs of recovery in individuals with PDOC; however, these observations are not always incorporated into clinical assessment or diagnostic interpretation due to the inherent ambiguity of behavioral responses.

Aim and Method

This study explores how implicit biases and microaggressions may influence the interpretation of caregiver observations in PDOC care. Furthermore, it introduces a conceptual framework—the Context‐Dependent Diagnostic Sensitivity Model—to illustrate how clinical awareness of bias and improved communication with families may contribute to more accurate diagnostic interpretation. Semi‐structured interviews were conducted with seven family caregivers of individuals with PDOC living in home healthcare settings in Japan. Using thematic analysis, the study examined caregivers' experiences of communication and interaction with healthcare professionals.

Findings

Caregivers frequently reported situations in which their interpretations of patient responses were minimized or reframed as unrealistic expectations. Such interactions sometimes limited the incorporation of caregiver observations into clinical assessment and decision‐making processes. These findings suggest that subtle forms of bias embedded in professional communication may influence opportunities for behavioral observation and family participation in care.

Conclusion

By integrating qualitative findings with insights from disability studies and research on implicit bias, this study highlights the potential impact of microaggressions on diagnostic sensitivity and clinical interaction in PDOC care. Recognizing and addressing these dynamics may contribute to improved collaboration between healthcare professionals and family caregivers, as well as to the development of more effective clinical practices.

1. Introduction

Prolonged Disorders of Consciousness (PDOC), including unresponsive wakefulness syndrome (UWS) and minimally conscious state (MCS), present persistent challenges in clinical assessment and long‐term care [1]. Accurate diagnosis relies primarily on behavioral observation, yet distinguishing levels of consciousness remains difficult, with reported misdiagnosis rates reaching up to 40% [2]. Clinical assessment is therefore inherently dependent on the interpretation of subtle and often ambiguous behavioral responses.

In this context, family caregivers may play a crucial role. Due to their prolonged and continuous interaction with patients, caregivers are often able to detect subtle changes in behavior that may not be observable during brief clinical encounters. Previous studies and clinical guidelines have emphasized the importance of incorporating caregiver observations into assessment processes [3, 4, 5, 6, 7]. At the same time, research on PDOC care has shown that family perspectives may be difficult to translate into clinically recognized evidence, and that the boundary between medical interpretation and family experience is often contested [5].

Emerging research in clinical decision‐making suggests that interpretation of patient behavior is not solely determined by observable evidence but may also be influenced by implicit cognitive processes. In particular, implicit bias [5, 8]—unconscious assumptions that affect perception and judgment—has been shown to shape clinical interactions and decision‐making across healthcare contexts. However, little attention has been paid to how such biases may influence the interpretation of caregiver‐reported observations in PDOC care.

In parallel, the concept of microaggressions [6, 8] originally developed in psychology and social justice scholarship has been used to describe subtle and often unintentional forms of invalidation embedded in everyday communication. While microaggressions have been widely studied in relation to race, gender, and disability, their relevance to neurological assessment and clinical judgment remains underexplored. In the context of PDOC care, microaggressions may manifest as the minimization or reinterpretation of caregiver observations, potentially shaping opportunities for behavioral assessment.

Previous studies on family and healthcare professional perspectives in PDOC care have identified tensions around communication, authority, and the interpretation of patient behavior [7, 9, 10, 11, 12]. However, these tensions have rarely been conceptualized through the combined lens of implicit bias, microaggressions, and epistemic injustice. Taken together, these perspectives suggest that the interpretation of behavioral evidence in PDOC is not purely objective but may be influenced by interpersonal and structural factors within clinical interactions.

This study explores how implicit bias and microaggressions may influence the interpretation of caregiver observations in PDOC care. Drawing on qualitative interviews with family caregivers, it examines how communication practices and professional assumptions shape clinical interaction. It further proposes a conceptual framework, the Context‐Dependent Diagnostic Sensitivity Model, to illustrate how awareness of bias and engagement with caregivers may enhance diagnostic interpretation. The concept of microaggressions as subtle, often unconscious forms of invalidation embedded in everyday interactions, clinical communication is conceptualized as a site where caregiver knowledge may be differentially recognized, interpreted, or constrained.

From this perspective, the Context‐Dependent Diagnostic Sensitivity Model is proposed as a framework to illustrate how such interactional processes may shape diagnostic sensitivity, either limiting or enhancing the recognition of subtle signs of consciousness depending on clinical awareness and communication practices.

2. Aim

The research question of this study is how caregiver knowledge is recognized, interpreted, and valued within clinical interactions. Based on this question, the study aimed to examine how implicit biases and/or microaggressions shape the recognition and interpretation of caregiver knowledge in PDOC care, and how these processes may influence clinical judgment and diagnostic interpretation.

3. Method

This study conducted semi‐structured interviews with seven family caregivers who were members of a PDOC family association and provided care for individuals with PDOC living in home healthcare settings in Japan. Interview data were analyzed using thematic analysis, following the approach described by Braun and Clarke [13]. A total of 177 initial codes were generated from the interview data. These codes were then organized from two analytic perspectives: (1) structural exclusion, or what is lacking in the care environment, and (2) deprivation of cognitive status, or why caregiver knowledge does not easily reach clinical assessment and support systems.

To enhance analytic rigor, the coding process, grouping of codes, identification of themes, and coherence of the thematic structure were reviewed and discussed with a second researcher. This collaborative review contributed to the validation and refinement of the interpretive framework and was informed by the principles of qualitative reporting outlined in the COREQ checklist [14].

The authors declare no conflict of interest related to this study. This study was approved by the Research Ethics Review Committee of Ritsumeikan University.

4. Results

Thematic analysis of interviews with seven family caregivers of individuals with PDOC (Table 1) revealed the process by which caregivers' knowledge is reinterpreted, reframed, and suppressed during clinical interactions, ultimately influencing diagnostic interpretation. A total of 177 initial codes were generated from the interview data. These codes were coded from two aspects: 1. “What is lacking = lack of external resources” and 2. “What are the reasons for not reaching the target = epistemological exclusion mechanisms.”

Table 1.

Attributes of the interviewees.

Interviewee	Gender	Age	Relationship with the individual with PDOC	Occupation of the interviewee	Method of approaches	Number of data coders
A	Female	50's	Parent	Full‐time housewife	Face to face	33
B	Female	50's	Spouse	Part‐time medical worker	Face to face	34
C	Female	60's	Parent	Full‐time civil servant	Face to face	24
D	Female	60's	Parent	Full‐time housewife	Face to face	18
E	Male	50's	Spouse	Part‐time office worker (home base)	Online	21
F	Female	40's	Parent	Full‐time housewife (Leaving work to provide care)	Online	26
G	Female	60's	Parent	Full‐time service industry	Online	21
(Total)						177

The 177 codes were divided into two kinds focused on Structural exclusion —“caregivers are unable to access what they need” and Deprivation of cognitive status —“caregivers are not treated as subjects who know/speak”.

4.1. Structural Exclusion

Structural exclusion comprised eight themes describing the lack of external resources in home‐based PDOC care (Table 2).

• 1. Support and consultation systems

  Caregivers maintained home‐based care through interactions with multiple support providers, including home‐visit care workers, consultation support specialists, visiting nurses, and rehabilitation professionals. However, the support system was not always stable. Participants described difficulties in contacting consultation workers, shortages of support providers, poor coordination among agencies, and variation in the quality of services. Although support services existed, they were not always accessible when needed, requiring caregivers to coordinate, negotiate, and advocate for support themselves.

• 2. Burden on caregivers

  Caregivers assumed multiple roles, including medical care, emergency response, continuous monitoring, and coordination of services. When caregiving responsibilities were concentrated on a single primary caregiver, participants described not only physical exhaustion but also psychological distress, loss of confidence, and fear of burnout. At the same time, some caregivers described developing practical knowledge, resilience, and new field of view through long‐term caregiving experiences.

• 3. Administrative and systemic issues

  Narratives concerning administrative and institutional systems revealed delays in service initiation, complex application procedures, insufficient benefits, out‐of‐pocket costs, and limited understanding among administrative staff. Although formal systems existed, access to support often depended on whether caregivers could obtain information, submit applications, and explain the necessity of services. As a result, institutional support did not always function in accordance with the realities of home life, and access to services was influenced by caregivers' negotiation capacity and regional differences.

• 4. Respite care and facilities

  With regard to respite care and institutional resources, caregivers reported a shortage of available facilities, limited capacity to provide medical care, and concerns that hospitalization or institutional stays could worsen the patient's condition. Although respite care is intended to provide caregivers with rest, participants often felt that there were few places where they could safely entrust the person with PDOC. In some cases, using respite services created additional anxiety and burden. Thus, respite care did not fully function as a reliable resource for sustaining home‐based care.

• 5. Knowledge and information gaps

  During the transition to home care, caregivers faced gaps in practical information that had not been sufficiently addressed in hospital settings, such as how to obtain medical supplies, manage devices, and provide care in daily life. Caregivers had to search for information and acquire knowledge through trial and error after discharge. These information gaps increased confusion during the early stages of home care and contributed to anxiety and repeated mistakes.

• 6. Relationship with local community and wider society

  Caregivers experienced limited understanding from the community, social gaze, stigma, and isolation. At the same time, some participants described gradual changes in local relationships, including small acts of assistance and increased familiarity over time. These narratives indicate that home‐based life is shaped not only by medical and welfare services but also by social recognition, community relationships, and the broader environment in which the person with PDOC and their family live.

• 7. Anxiety about the future and continuity

  Caregivers expressed strong concerns about their own ageing, health, and the future continuity of care after they were no longer able to provide support. When current home life depended heavily on the caregiver's personal effort, the question of who would sustain the same level of care in the future became a serious concern. At the same time, participants expressed a strong desire to establish a care system that would allow the person with PDOC to continue living at home.

• 8. Quality of life and the person's daily life

  Caregivers placed importance on the person's health, enjoyment, food, responses, and daily rhythm, and often regarded home life as contributing positively to the person's quality of life. Some caregivers described the home environment as more stable and healthier than hospital or institutional settings. Even when the person could not communicate verbally, caregivers interpreted facial expressions and subtle responses as meaningful indicators of quality of life and practiced person‐centered care based on these observations.

Table 2.

Contextual Categories Identified in structural exclusion.

Themes	Numbers of comments	Composition ratio
1. Support and consultation system	39	22.0%
2. Burden on caregivers	37	20.9%
3. Administrative and systemic issues	33	18.6%
4. Respite care and facilities	20	11.3%
5. Knowledge and information gaps	17	9.6%
6. Relationship with the community and society	13	7.3%
7. Anxiety about the future and continuity	10	5.6%
8. QOL/the person's life	8	4.5%
(Total)	177	100.0%

A common axis of structural inaccessibility—across all eight domains, caregivers are systematically unable to access the resources, support, information, and recognition they require. The eight themes collectively describe the landscape of deficit and disconnection.

4.2. Deprivation of Cognitive Status

These four themes as four distinct moments of epistemic exclusion and are different manifestations of caregivers not being treated as “knowing person(s).” As shown in Table 3 below, most codes were related to silencing and invalidation.

• 1. Invalidation of caregiver observation

  Caregivers frequently reported that subtle behavioral responses observed in everyday settings were not recognized as clinically meaningful. Observations described by caregivers were often interpreted as inconsistent, non‐specific, or clinically insignificant. This led to a perceived gap between lived experience and clinical evaluation. One caregiver described that subtle behavioral changes were often dismissed as clinically insignificant, stating that “they (medical workers) said it was just a reflex and not meaningful.”

• 2. Reframing of caregiver interpretations as unrealistic expectations

  Caregiver interpretations of patient responses were sometimes reframed by healthcare professionals as expressions of unrealistic hope or wishful thinking. Such reframing shifted the focus from potential signs of recovery to assumptions about caregiver expectations, thereby influencing how observations were evaluated. Another participant reported that their observations were interpreted as unrealistic expectations, with professionals suggesting that “it might be your hope rather than an actual response.”

• 3. Silencing of caregiver knowledge

  These interactions occasionally discouraged caregivers from sharing further observations. Some participants described hesitancy to report subtle behavioral changes due to concerns about being misunderstood or dismissed. As a result, caregiver knowledge was not always fully articulated within clinical encounters. This led some caregivers to hesitate in sharing further observations, as one participant noted, “I stopped mentioning small changes because I felt they wouldn't take it seriously.”

• 4. Foreclosure of observational opportunity

  Caregivers described situations in which potential signs of consciousness were dismissed or reframed before they could be jointly observed or clinically examined. In such cases, the problem was not simply that caregiver observations were insufficiently incorporated after assessment, but that opportunities to observe the person's subtle responses were foreclosed in advance. When caregiver reports were treated as subjective, emotional, or clinically irrelevant, professionals were less likely to create conditions for repeated, contextual, or family‐informed observation. As a result, possible behavioral evidence was excluded before it could become assessable, thereby constraining diagnostic interpretation and reducing the sensitivity of clinical judgment.

Table 3.

Contextual Categories Identified in deprivation of cognitive status.

Themes	Subthemes	n (%)
1. Invalidation of caregiver observations	Lack of recognition, epistemic gap	35 (19.8%)
2. Reframing of interpretations	Professional interpretation, emotional attribution	24 (13.6%)
3. Silencing of caregiver knowledge	Hesitation, withdrawal, structural constraints	89 (50.3%)
4. Foreclosure of observational opportunity	Pre‐emptive dismissal, loss of observational chance	29 (16.4%)

All four themes describe a process of epistemic dispossession: caregivers are not treated as legitimate knowers. Their observations are invalidated, their interpretations are overwritten, their knowledge is silenced, and their opportunities for diagnostic participation are foreclosed.

Taken together, the findings suggest that caregivers are not merely experiencing a lack of support. Rather, they possess situated, experiential knowledge of the person with PDOC, yet are not always recognized as legitimate knowers within clinical and institutional contexts.

5. Discussion

This study demonstrates that not only diagnostic criteria but also interactional processes play a central role in shaping clinical interpretation in PDOC care. The findings reveal that caregiver knowledge is not simply absent from clinical decision‐making but is actively transformed through a sequence of interactional dynamics. As illustrated in the proposed model, caregiver observations may initially be overlooked or dismissed (invalidation), subsequently reinterpreted within clinical frameworks (reframing), and eventually become unexpressed or withheld (silencing). This process ultimately constrains opportunities for behavioral observation, thereby influencing diagnostic interpretation and limiting diagnostic sensitivity.

Figure 1 illustrates this sequential process through which caregiver knowledge becomes progressively transformed within clinical interactions.

Figure 1.

Process of caregiver knowledge transformation in PDOC care.

These findings suggest that implicit biases are not only internal cognitive processes but are also enacted within everyday clinical interactions as microaggressions. Such microaggressions may subtly shape how caregiver observations are recognized, interpreted, and incorporated into clinical decision‐making. In this sense, diagnostic outcomes in PDOC care are not solely determined by clinical tools or observable behavior but are also influenced by the interactional context in which such observations are evaluated.

Figure 2 presents two contrasting interactional pathways through which such processes may either constrain or enhance diagnostic interpretation.

Figure 2.

Microaggressions Model.

These results are consistent with previous research on PDOC care, which has highlighted the marginalization of family perspectives in clinical settings. Kitzinger et al. have demonstrated that family caregivers often possess detailed experiential knowledge of the patient's behavior, yet struggle to have this knowledge recognized as clinically meaningful. Similarly, research by Sharma and colleagues has shown that interactions between healthcare professionals and These results are consistent with previous research on PDOC care, which has highlighted the marginalization of family perspectives in clinical settings. Edgar, Kitzinger, and Kitzinger have shown that chronic disorders of consciousness create interpretive tensions between medical science and family experience [9]. Nettleton, Kitzinger, and Kitzinger similarly describe the difficulty of distinguishing between vegetative and minimally conscious states as a diagnostic and interpretive problem rather than a purely technical one [10]. Latchem, Kitzinger, and Kitzinger further demonstrate that family perceptions of rehabilitation are shaped by the symbolic and relational meanings of care, not only by clinical outcomes [11].

Research on healthcare professional perspectives also supports this interpretation. Studies of staff experience in PDOC care indicate that professionals face emotional, ethical, and communicative challenges when working with patients and families [7, 12]. The present study contributes the existing literature by suggesting that these challenges are not only matters of communication or access, but are embedded in subtle interactional processes, including microaggressions. In this sense, the marginalization of caregiver knowledge is not incidental but is reproduced through routine clinical interactions.

From a theoretical perspective, these findings can be understood as a form of epistemic injustice, in which caregivers are not recognized as legitimate knowers within clinical contexts [15]. More specifically, the study identifies a process of epistemic dispossession, whereby caregiver knowledge is actively transformed, invalidated, or excluded. While previous studies have often focused on informational gaps or structural barriers, the present analysis highlights how knowledge itself is reshaped through interaction.

This perspective contributes to existing discussions of implicit bias by demonstrating that bias operates not only at the level of individual cognition but also at the level of interaction. Microaggressions, in this context, function as mechanisms that regulate whose knowledge is considered credible, thereby directly influencing the epistemic conditions of clinical decision‐making.

From a clinical perspective, these findings have important implications for improving diagnostic sensitivity in PDOC care. The Context‐Dependent Diagnostic Sensitivity Model (Figure 3) illustrates how different interactional pathways may either constrain or enhance diagnostic interpretation. Interaction patterns characterized by unexamined bias and restrictive framing may reduce opportunities for meaningful behavioral observation. In contrast, clinical practices that actively engage with caregiver knowledge as a legitimate and valuable form of evidence may expand observational opportunities and enhance diagnostic accuracy.

Figure 3.

Context‐Dependent Diagnostic Sensitivity Model.

These findings suggest that improving diagnostic practice requires not only technical refinement of assessment tools but also critical reflection on communication practices and professional assumptions. Developing clinical frameworks that recognize caregiver knowledge and address implicit bias may support more inclusive and collaborative approaches to decision‐making. This highlights the need for clinical practices that actively engage with caregiver knowledge as a meaningful component of assessment, rather than treating it as secondary or subjective information.

To enhance the rigor of the analysis, the coding process and thematic structure were reviewed and discussed with a second researcher. This collaborative approach contributed to the validation and refinement of the interpretive framework and was informed by the principles of qualitative reporting outlined in the COREQ checklist [13].

Several limitations should be noted. This study is based on a relatively small sample of family caregivers in Japan, and the findings may not be generalizable to other cultural or healthcare contexts. In addition, the analysis relies on self‐reported experiences, which may be subject to recall or interpretation bias. Future research should examine how these interactional processes operate across different clinical settings and explore strategies to mitigate their impact on diagnostic practice.

Furthermore, future research should examine how microaggressions operate across multiple levels of care, including direct clinical interventions, interprofessional collaboration, and broader institutional structures. Integrating a multi‐layered framework (Micro, Mezzo, and Macro) with microaggression theory may help clarify how caregiver knowledge is either constrained or incorporated refinement of CRS‐R‐based assessment by situating standardized behavioral evaluation within a more rational and context‐sensitive model of diagnostic practice.

Funding

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The data that support the findings of this study are not publicly available due to privacy and ethical restrictions. The interview data contain sensitive personal information and potentially identifiable narratives from family caregivers; therefore, they cannot be shared publicly.