Experiencing and Responding to Dual Stigma: A Focus Group Study with Caregivers of Children Living with Disabilities in Freetown, Sierra Leone

Experiencing and Responding to Dual Stigma: A Focus Group Study with Caregivers of Children Living with Disabilities in Freetown, Sierra Leone | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Article Experiencing and Responding to Dual Stigma: A Focus Group Study with Caregivers of Children Living with Disabilities in Freetown, Sierra Leone Hanna Luetke Lanfer, Elizabeth Anderson, Fatmata Bah, Sarah Krawiec, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5999892/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 20 Jun, 2025 Read the published version in Scientific Reports → Version 1 posted 10 You are reading this latest preprint version Abstract Background Stigma by association refers to the process by which individuals connected to someone with a stigmatized condition, such as caregivers of children living with disabilities (CLWDs), are themselves marginalized or discredited. In Sierra Leone, cultural beliefs frame certain disabilities, especially congenital or early-onset conditions, as curses or moral failings, leading to blame and a dual burden of social exclusion. This study explores how caregivers experience and respond to this dual form of stigma by association and the social support they encounter or desire. Method We conducted six focus group discussions with 37 caregivers of CLWDs in Freetown, Sierra Leone, recruited through hospitals and an NGO providing therapeutic services. Discussions were guided by a semi-structured interview protocol and analyzed using qualitative content analysis. Results Caregivers reported experiencing stigma by association through labeling, avoidance, societal blame, and coercion into traditional practices. Stigma was deeply rooted in cultural narratives that attribute disability to supernatural causes, often extending blame to caregivers. Participants employed three overarching strategies to navigate stigma: withdrawing, coping (e.g., spiritual reframing, focusing on positive interactions), and resisting (e.g., challenging superstitious beliefs, advocating for inclusion). Despite some positive experiences of empathy and social inclusion, caregivers expressed a strong need for more practical support, community awareness, and holistic interventions to reduce stigma and foster understanding. Discussion This study illuminates the complex interplay of cultural beliefs and social stigma shaping the experiences of caregivers of CLWDs. While caregivers demonstrated resilience and adaptive strategies, the dual stigma of association and societal blame underscores the urgent need for inclusive policies and community-based interventions. Amplifying the voices of caregivers and addressing their needs holistically are essential steps toward reducing stigma and creating supportive environments. This study contributes to the broader discourse on caregiving and stigma, offering insights for research and interventions in similar cultural contexts. Trial registration N/A Biological sciences/Psychology/Human behaviour Health sciences/Health care/Public health Health sciences/Health care/Patient education Stigma by association Disability Caregivers Sierra Leone Social exclusion Children living with disabilities Introduction Stigma refers to a distinguishing "mark" that differentiates individuals based on specific attributes, characteristics, conditions, or behaviors, often framing them as deviations from societal norms [1–4]. These marks, however, are not inherently positive or negative. Instead, through social processes, they acquire meaning, leading to the attribution of value or disvalue depending on the cultural and relational context [4]. Stigma thus operates as a socially constructed phenomenon, simultaneously affirming the “normalcy” of some while marginalizing others [1, 4]. A trait that stigmatizes one person hence affirms the normalcy of another, illustrating that stigma is constructed within social and relational contexts [1, 4]. Stigma operates on multiple levels: through societal structures, interpersonal interactions, and internalized beliefs, profoundly shaping the experiences, opportunities, and well-being of those affected [5–8]. Disability – whether visible or invisible – has historically been framed as a mark. Disability has often been constructed as a deviation from societal norms and stigmatized across different societies and historical periods [9, 10] as societal expectations of able-bodied norms create frameworks that casts persons living with disabilities (PLWDs) as deviant or burdensome [11, 12]. While research on stigma has traditionally focused on the direct experiences of stigmatized individuals, such as PLWDs [13], stigma also extends to those associated with the stigmatized – families, caregivers, and close connections – leading to what is termed stigma by association [14–16]. Caregivers of persons with disabilities often face forms of social marginalization similar to those experienced by PLWDs, leading to affiliate stigma, the internalization of negative beliefs about the associated stigma [16, 17]. This phenomenon is particularly pronounced in cultural contexts where disability is imbued with additional layers of meaning. In Sierra Leone, disabilities – especially those by birth or acquired without an accident – have been interpreted through a cultural lens that associates them with curses, sin, or moral failings within the family [11, 18, 19]. This belief system then stigmatizes the individual with a disability but also extends to parents, who may be held responsible or blamed for the condition [13, 18, 20]. Studies from other settings with similar cultural frameworks have shown that parents and other family caregivers deal with the practical challenges of caring for a person with a disability and stigma by association as well as with the public stigma implicitly or explicitly associated with being held accountable for their child’s condition [16, 21]. Research on the needs and experiences of stigma of people living with disabilities in Sierra Leone remains underexplored, even more so the experiences of their caregivers. In our study, we aim to respond to this gap in the literature by exploring what forms of stigma caregivers of children living with disabilities (CLWD) in Sierra Leone experience due to their children’s conditions and how they respond to them. By focusing on the caregivers' perspectives, this research seeks to shed light on how stigma by association is enacted as it intersects with sociocultural beliefs about disability. Understanding these experiences is crucial for developing interventions that address not only the needs of individuals with disabilities but also those of the families who support them. Background Conceptual overview of stigma The term ‘stigma’ originates from Ancient Greece, where it referred to physical marks branded onto individuals, such as slaves, to signify their inferior social status and to mark them as objects of exclusion from societal privileges [ 1 ]. Over time, the concept evolved beyond physical markings to encompass a broader social and symbolic process of discrediting individuals or groups based on attributes or conditions perceived as deviating from societal norms [ 22 , 23 ]. Stigma manifests in social interactions, hence when society identifies a difference, labels this as negative and differentiates between those with and without the mark [ 16 , 17 , 23 ]. Addison (2023) therefore suggests conceptualizing stigma as a verb to emphasize that it is enacted between people and gains its meaning relationally. Stigma functions as a mechanism of social control by discouraging nonconformity with the norm (e.g., ostracizing individuals with unconventional lifestyles), upholding the values of a given society (e.g., emphasizing economic productivity and performance as ideals, often marginalizing those unable to meet these standards), and facilitating social cohesion between those who adhere to the dominant norm (e.g., fostering in-group solidarity by excluding or marginalizing those with disabilities) [ 1 , 23 – 25 ]. Stigma is not a static label but a dynamic process rooted in historical, socioeconomic and cultural contexts [ 4 ]. How and whether a certain attribute is perceived, (dis)credited, and constructed as stigma, is highly context-dependent and contingent on cultural values and societal power dynamics that can change [ 4 , 24 ]. The attributes themselves are not inherently positive or negative; rather, they are assigned value through social processes. Historically, disability has been framed as a personal tragedy, moral failing, or sign of spiritual disharmony, justifying stigmatization and social exclusion [ 26 ]. The medical model, which dominated the 19th and 20th centuries, reinforced this deficit-based view by framing disability as problematic, requiring treatment or cure and thereby further marginalizing PLWDs [ 26 , 27 ]. Over time, the social model of disability emerged, reframing disability as the result of societal and environmental barriers, such as inaccessible infrastructure and discriminatory practices, rather than individual impairments [ 27 , 28 ]. This reframing positions disability as arising from the failure of societies to accommodate diverse needs, rather than from inherent limitations within individuals. Although the World Health Organization’s definition of disability as well as international policies reflects this shift, institutionalization, exclusion, and dependency-based frameworks remain prevalent and continue to perpetuate the marginalization of PLWDs [ 29 , 30 ]. Moreover, in many capitalistic, achievement-oriented societies that prioritize able-bodied norms, disability continues to be perceived as a marker of difference or inferiority within societies, as success and economic contribution are often narrowly defined through productivity, independence, and physical or cognitive performance [ 7 ]. Types and levels of stigma Goffman (1963) identified three primary types of stigma: 1) visible stigma, 2) acquired stigma, and 3) tribal stigma. 1) Visible stigmas are those immediately apparent to others, such as physical disabilities or disfigurements. These stigmas often provoke immediate reactions and judgments, as they disrupt societal expectations of ‘normalcy’ in appearance or function [ 31 ]. For example, individuals with conditions like Down syndrome, cerebral palsy or physical impairment needing a wheelchair may face gazes as their visible mark draws attention and reinforces societal discomfort with physical or cognitive differences [ 32 – 35 ]. 2) Acquired stigmas are associated with behaviors, conditions, or life circumstances that develop over time, such as mental illness, addiction, or chronic illness, which may result in disability. These stigmas are often intertwined with moral judgments, as they are perceived to be within an individual’s control, whether accurately or not [ 23 , 36 ]. 3) Tribal stigmas are tied to certain group affiliations, such as race, ethnicity, religion, or cultural identity, some of which are visible whereas others are not [ 37 , 38 ]. Tribal stigma is often inherited or culturally transmitted [ 1 ]. In contexts like Sierra Leone, disability is sometimes intertwined with cultural and spiritual beliefs, where individuals with congenital conditions are stigmatized as bearing ancestral curses or signs of witchcraft [ 8 , 26 , 39 ]. These types of stigma are not mutually exclusive and often intersect in complex ways [ 40 ]. For example, an individual with a visible physical disability who is also a member of a racially marginalized group may experience layered or compounded stigmatization that amplifies their social exclusion [ 4 , 41 ]. Furthermore, stigma operates at multiple, interconnected levels – public, individual, and structural – each influencing and reinforcing the others [ 16 ]. Public stigma, also referred to as interpersonal or social stigma, emerges through collective attitudes, behaviors, and social interactions and serves as the foundation for other forms of stigma [ 42 , 43 ]. It reflects societal norms that define certain traits, conditions, or behaviors as deviant, shaping how individuals perceive and react to groups that do not possess the desired characteristics. For example, public stigma continues to be evident in derogatory language for disabilities, such as cripple or crazy [ 44 ]. These public perceptions and reactions have shown to fuel individual-level stigma, where negative stereotypes become internalized within the person not conforming with the dominant norm [ 45 , 46 ]. Self-stigma due to experiencing public stigma has been associated with psychological distress, anxiety, stress and lowered quality of life experience [ 47 , 48 ]. Structural stigma, where discrimination is embedded within societal policies and institutions, manifests in inaccessible public spaces, limited disability-specific healthcare, and inadequate educational provisions for CLWDs [ 46 , 49 , 50 ]. While these levels are conceptually distinct, they frequently intersect, creating a compounding effect on the lives of those who are stigmatized. The intersection of structural and public stigma, for instance, can amplify the exclusion of individuals with disabilities, as public attitudes shape institutional policies that fail to address their needs adequately [ 49 , 51 , 52 ]. Stigma by association and affiliate stigma Stigma is not limited to individuals directly marked by a discrediting trait; it extends to those associated with stigmatized persons, such as caregivers [ 1 ]. This phenomenon, referred to as stigma by association or courtesy stigma, highlights how societal perceptions of deviance can ‘spill over’ to those in close relationships with stigmatized individuals, such as family ties, friendships, or even professional associations [ 1 , 17 , 53 ]. Stigma by association reflects the external, relational dynamics of being connected to a stigmatized individual, manifesting through public blame, judgment, and social exclusion. Birenbaum (1970) describes those associated with a stigmatized person as “‘normal’ yet ‘different’. Their normality is obvious in their performance of conventional social roles; their differentness is occasionally manifested by their association with the stigmatized during encounters with normal” (p. 196). Thus, a central distinction between primary stigma and stigma by association lies in its visibility. For individuals with stigmatized attributes, visibility often is a defining feature of their stigma, whether immediately apparent or revealed over time. For stigma by association, however, the visibility of the stigma is contingent upon their proximity to the stigmatized person [ 15 , 16 , 54 ]. For instance, when caregivers are with their child who has a disability, they may be subject to public stigma, including intrusive questions or overt discrimination [ 21 ]. Yet, in contexts where the child is absent, caregivers can, to some extent, escape the immediate effects of stigma by association and decide whether to disclose or not their association with the stigmatized person [ 17 , 53 ]. This situational fluidity contrasts with the experiences of the stigmatized individual, whose attributes remain largely constant regardless of context [ 17 , 31 ]. However, even in the absence of the child, caregivers may carry the internalized effects of the stigma by association [ 17 , 55 ]. This process is referred to as affiliate stigma, the internal psychological impact on caregivers as they internalize societal prejudices and stereotypes about the stigmatized individual independent of public scrutiny, leading to feelings of guilt, shame and stress as multiple studies show (e.g., [ 31 , 56 – 60 ]). Affiliate stigma may be heightened when cultural or religious beliefs associate the child’s condition with supernatural forces, such as curses or parental wrongdoing. These beliefs not only stigmatize the child but also intensify feelings of shame and blame among caregivers, as they are perceived to bear responsibility for the disability [ 12 , 21 , 61 ]. For instance, a study among 102 caregivers of children living with intellectual disabilities in Ethiopia revealed that almost half of the participants felt ashamed of their child's condition and more than a quarter attempted to keep their child's condition a secret [ 21 ]. Disability in Sierra Leone Disability in Sierra Leone encompasses a broad range of conditions, including physical impairments (e.g., amputations from war injuries or mobility limitations from accidents exacerbated by unsafe working and living conditions common in Sub-Saharan Africa), sensory disabilities (e.g., blindness and deafness), and intellectual and developmental disabilities (e.g., cerebral palsy, Down syndrome, and autism) [ 62 ]. Moreover, while chronic illnesses, such as diabetes or sickle cell disease, are not disabilities in themselves, they can result in disabling conditions over time when untreated or poorly managed [ 63 ]. The exact prevalence of disability in Sierra Leone remains unclear due to unreliable data collection and a lack of comprehensive surveys. Reports suggest that the needs of PLWDs are “grossly underestimated,” highlighting significant gaps in understanding and addressing disability in Sierra Leone (UN Partnership on the Rights of Persons with Disabilities (UNPRPD), 2022, p. 16). This mirrors trends across Sub-Saharan Africa, where a high proportion of the population experiences disability and chronic illnesses, often without adequate access to healthcare or support systems [ 64 , 65 ]. These conditions are further compounded by the socio-political and cultural environment, which influences how disability is understood and experienced [ 41 , 66 , 67 ]. Disability in Sierra Leone is shaped by a complex interplay of historical, cultural, and socio-political factors. The legacy of the civil war (1991–2002) influenced how different types and forms of disability are perceived and experienced, as Berghs and Dos Santos-Zingale (2011) concluded from their anthropological work. During and after the conflict, individuals with war-related disabilities, such as amputations, categorized themselves as ‘victims’ to access resources and support whereas the label ‘disabled’ was often associated with social devaluation and dependency [ 19 , 68 ]. The ‘victim label’ was seen as more socially acceptable and aligned with reparative justice frameworks, and war amputees have received considerable international attention, leading to the establishment of long-lasting support structures and advocacy groups [ 69 ]. In contrast, individuals with other disabilities have not benefited from similar levels of support or say in defining their public image (ibid). Moreover, especially congenital or early-onset conditions continue to be rooted in traditional and religious beliefs, such as viewing disability as a curse or divine punishment [ 11 , 70 ]. These beliefs hence also extend the condition to the family, especially parents, of the PLWD who might be perceived as bearing responsibility for the condition [ 71 ]. Additionally, they can result in stigma, prejudices, and social exclusion from social and economic participation for both the PLWD and their caregivers, especially for conditions like cerebral palsy that occur before, during or shortly after birth [ 11 , 26 , 32 , 71 ]. To our knowledge, the compounded stigma by association of caregivers of CLWDs has never been explored in Sierra Leone. This context, where certain disabilities are attributed to supernatural causes and caregivers may experience stigma by association and direct blame for their child’s condition, presents a unique opportunity to examine how stigma by association operates when compounded with societal perceptions of responsibility for disability. Hence, to address these complex and underexplored dynamics, this study was guided by the following research questions: RQ1: In what ways do caregivers of CLWDs in Sierra Leone experience stigma by association? RQ2: In what ways do caregivers of CLWDs in Sierra Leone respond to stigma by association? RQ3: What social support do caregivers of CLWDs in Sierra Leone experience and wish for? Methods Study design To explore experiences of stigma by association of caregivers with CLWDs in Sierra Leone, focus groups were conducted with caregivers of CLWDs. This study was conducted within the context of ongoing efforts to understand and address the challenges faced by caregivers of CLWDs in Freetown, Sierra Leone. It was designed as an exploratory study, serving two purposes: first, to provide preliminary insights and evidence for a larger research grant application aimed at developing comprehensive interventions; and second, to contribute to the ongoing work of the NGO, World Hope International’s Enable the Children (ETC) program. This organization provides physiotherapy, occupational therapy, and psychosocial support services to CLWDs and their caregivers across Freetown. ETC covered costs related to the contracted researcher and participant incentives (e.g., snacks). All other contributors volunteered their time without dedicated funding. Recruitment Given the role stigma plays in shaping the experiences of caregivers, this study specifically sought to engage those who had not yet been supported by ETC, as their perspectives could provide unique insights into the challenges faced before accessing formal support systems. To reach this group, the following recruitment approach was taken. ETC collaborates with several hospitals across Freetown, where their presence ensures a connection to CLWDs and their caregivers when they present themselves for medical care. Healthcare staff at these hospitals, upon identifying CLWDs whose conditions might benefit from ETC’s therapy services, provide referrals to the organization. As part of this process, caregivers who received a recommendation from hospital staff were then contacted by ETC personnel. During these initial interactions, caregivers were informed about the research project and invited to participate. Recruitment and data collection took place from November 2020 to January 2021. Data collection After establishing contact, all participants received an information sheet outlining the project’s objectives, data processing procedures, and measures to ensure data protection. Recognizing the low literacy rates among the population, the consent form was read and explained orally to each participant to ensure comprehensive understanding. Participants were given the opportunity to ask questions about the study and, if desired, discuss the consent form with a literate family member, friend, or trusted individual. Consent was obtained through a thumbprint or signature, ensuring that participants could provide informed consent regardless of their literacy level. We conducted six focus group discussions with six to eight participants in different hospitals across Freetown in the rooms used by the NGO. The focus group discussions were held in Krio by a local researcher who was contracted for this research project. The group discussions were guided by a semi-structured interview guide. Questions focused on sociodemographic data of the participants and the CLWD they took care of, experiences of stigma, response to stigma, and social support needs (see supplementary material for an overview of the question guide). Discussions were audio-recorded and lasted between 50 and 60 minutes. The translation to English and the transcription process occurred simultaneously. To allow for transcript accuracy and avoid the loss of meaning in the translation process, the focus groups were transcribed and translated by the researcher who conducted the group discussions. Transcripts were later discussed with the rest of the research team, who are all familiar with the sociocultural context of Sierra Leone and speak Krio. In the case of a metaphoric expression that does not have an equivalent in English or cultural differences which need a context explanation, a note with an explanation of the meaning of the expression was made in the transcript. Any personal data of the participants was pseudonymized, the audio recordings were deleted after transcripts were finalized. Data analysis Data were analysed using qualitative content analysis, supported by the software MAXQDA 2024 (VERBI GmbH). A first coding frame was built based on the main themes of the discussion guide. All group discussion transcripts were read and coded in a data-driven way to allow for the creation of new subcategories. In the following step of axial coding, these subcategories were reviewed, linked, aggregated and defined to ensure that they are mutually exclusive. During the following step of selective coding, the material was reviewed and recorded based on the final coding frame. The whole coding process was done by two researchers. Statement of positionality This research was conducted by an all-female team with diverse cultural and professional backgrounds, combining insider and outsider perspectives on the Sierra Leonean context. The first author, a foreign academic with extensive work and research experience in Sierra Leone, designed and oversaw the study. Two team members are expatriate physiotherapists with long-term engagement in therapy services for children with disabilities, while a local researcher provided essential cultural and linguistic insights. The research team was conscious of how their own backgrounds – particularly as individuals without disabilities – may have influenced their perspectives on stigma and caregiving experiences. Additionally, we acknowledge that our gender may have shaped participant interactions, particularly in relation to societal norms around caregiving and discussing sensitive topics. By integrating the expertise of local practitioners and researchers with international academic perspectives, the study sought to balance critical analysis with cultural sensitivity, ensuring a respectful and informed approach to understanding the complexities of stigma and disability in Sierra Leone. Results In this section we will first describe the sample demographics (Table 1), followed by the results for each of the three research questions with illustrative quotes. An overview of the coding scheme can be found in Table 2. Krio is a distinct language with its own grammar and structure, though it has roots in English. In translating participant quotes, we have aimed to preserve their original meaning and tone while making minor adjustments for clarity where necessary. Sample demographics A total of 37 caregivers of CLWDs participated in our study (see Table 1 for participant demographics). The sample consisted predominantly of women (84%). Among the participants, 29 (78%) were the biological parents of a child with a disability, 3 (8%) were grandparents, 3 (8%) were adoptive parents and in 2 cases (5%), other relatives participated. The CLWDs looked after by our study participants varied in age, with the majority between 2 to 10 years (30 children, 81%) as well as different types of disabilities, including hemiplegic cerebral palsy (38%), quadriplegic cerebral palsy (32%) and acquired brain injury (5%). Table 1. Demographics of study participants Characteristics n % Gender of participating caregiver Female (F) 31 84 Male (M) 6 16 Gender of child living with disabilities Male (M) 25 68 Female (F) 12 32 Caregiver relation to child Biological parent 29 78 Adopted parent 3 8 Grandparents 3 8 Other relatives (aunt, uncle) 2 5 Age of the child under 1 year 1 3 1 year 3 8 2 - 5 years 14 38 6 - 10 years 16 43 11 - 13 years 3 8 Disability of the child Hemiplegic cerebral palsy 14 38 Quadraplegic cerebral palsy 12 32 Diplegic cerebral palsy 3 8 Acquired brain injury 2 5 Epilepsy 1 3 Spastic cerebral palsy 1 3 Muscular dystrophy 1 3 Unilateral amputee 1 3 TB of the spine 1 3 Missing 1 3 Experiences of stigma by association among caregivers of CLWDs (RQ1) Our analysis revealed five key social manifestations of stigma by association experienced by caregivers: abusive language and derogatory remarks , labeling, avoidance and exclusion , rejection by family , and enforced conformity to traditional practices . These categories highlight the societal responses to caregivers and their children, as described by the participants in our study. Abusive language and derogatory remarks . Participants in our study described instances where they were subjected to derogatory remarks targeting both their children and themselves. Such remarks often arose during conflicts or everyday interactions and reflected negative societal attitudes toward CLWDs and their caregivers: “Like for me, when you and your neighbor have little argument, they will find a word to tell you. Any small thing that will happen they will say, ‘just leave us alone, look at the demonic child you are having, look at the cripple, she is a devil child who does not walk.’” (Group 1, Participant 2) According to our sample, abusive language and public shaming remarks were uttered in both private and public encounters, contributing to a sense of social hostility and reinforcing stigmatization. Labeling. Participants described how labeling was used as a social mechanism to identify both them and their children, often reducing their identities to the child’s disability. Unlike overt abusive language or derogatory remarks, labeling was described as a more pervasive, subtle, and socially normalized behavior. It involved the use of the child’s disability as a defining characteristic for both the child and the caregiver, reinforcing their ‘otherness’ within the community. This practice frequently emerged in daily conversations, where individuals would refer to the caregiver or child by the disability rather than their names or personal qualities: “When people refer to us, they will say things like, ‘Kadija’s child, the one with the amputated hand.’ People attach the child’s condition to their identity—and to the caregiver too. For me, they say, ‘That woman with the child who cannot talk.’ These are the challenges we face every day." (Group 3, Participant 5) Avoidance and exclusion. Some participants reported that they and their children were avoided by others in their communities. This avoidance was particularly pronounced among caregivers with children with congenital or early-onset conditions, like cerebral palsy, which are culturally linked to supernatural causes. Participants described how these behaviors reduced opportunities for social interaction and placed a strain on relationships within their communities: “It is not easy for me. Some people won’t even let their children play with my other children because they believe I have given birth to devils or demons. But I know that it is the Almighty God who gave me these children."(Group 4, Participant 1) Participants also reported being excluded from social places, including being forced to leave their communities due to the stigma associated with their children’s conditions: “Due to the condition of my child, I have been given a notice to quit from my place.” (Group 3, Participant 1) Rejection by family was a repeatedly mentioned form of stigma participants described. Reported family responses varied from indifference to rejection by close and extended family members. This lack of familial support was described as a source of additional challenges in managing caregiving responsibilities. For example: “Like for my own, the dad had passed away in 2013 and my husband’s family does not want to know anything [about us]. When the child had a problem, I told all of them and no one wanted to know about us, they do not care. I told them about this operation but still they do not care and left me with nothing.” (Group 1, Participant 2) Enforced conformity to traditional practices . Participants in our study described instances where societal and cultural beliefs about disability led to coercion into traditional rituals or practices. These expectations were often rooted in perceptions of disability as a curse or a sign of spiritual imbalance. Caregivers reported being pressured to comply with these beliefs, sometimes against their own judgment or will. One participant recounted their experience: “My husband’s family said we should go to the bush. We went with her to traditional healers and they said for me to return her, like traditionally she is a devil, and they have a way to make her return to the bush by doing some traditional rites.” (Group 2, Participant 2) According to the participant, the pressure to perform these rites reflects the societal demand to align with traditional explanations and solutions for disability, which tends to place responsibility on the caregiver to address the perceived spiritual cause. Summary of RQ 1 Caregivers of CLWDs in our study described various manifestations of stigma by association, where societal attitudes and cultural beliefs about disability stigmatized not only the child but also the caregiver. These included abusive language, labeling, avoidance and exclusion, rejection by family, and enforced conformity to traditional practices, highlighting the dual burden of stigma faced by both child and caregiver. While the majority of participants reported experiencing stigma in various forms, only one participant reportedly had not encountered stigmatizing attitudes against themselves or the child. Caregivers responses to experiences of stigma by association (RQ2) This section presents the findings on caregivers' responses to stigma by association, categorized into withdrawing, coping, and resisting. Each category includes several subcategories that capture the specific strategies caregivers employed to navigate the stigma they and their child experience. Withdrawing. The first category identified in caregivers' responses to stigma by association is withdrawing, which encompasses actions and emotions aimed at minimizing exposure to social judgment and ridicule. Subcategories of withdrawing include shame , hiding , and emotional strain . Shame emerged as an internalized emotional response to societal judgment, shaping how caregivers of CLWDs navigated their daily lives. Participants described shame as stemming from societal expectations and the perception of their child’s disability as a mark of personal or familial inadequacy. According to some participants, this internalized stigma led to a reluctance to be seen in public with their child or to engage in community activities. The fear of judgment – whether expressed through looks, whispers, or outright comments – profoundly influenced caregivers’ actions and decisions. As one participant recounted: "Sometimes I feel very ashamed walking with her or even taking her to physiotherapy—unless my relatives encourage me to go. For a young woman like me, facing these challenges is not easy. I cry at home." (Group 2, Participant 8) Hiding reflected a behavioral response to the feelings of shame and fear of societal judgment. Some caregivers reported actively avoiding public spaces or situations where their child’s disability might be noticed, choosing instead to keep their child at home. This action was described as a protective mechanism to shield both the caregiver and the child from ridicule or negative attention. By limiting their public presence, caregivers sought to reduce potential exposure to stigma. One participant shared: "If I am in church and they ask me to walk with my child, he will suddenly shout and stretch, and then people start noticing his abnormality. They begin to see that he is not like other children. That is why I feel ashamed. Right now, I don’t take him out … I keep him at home for his medicine and therapy." (Group 2, Participant 4) This account underscores how hiding served as a response to stigma, offering temporary relief from external judgment but at the cost of increased isolation and limited social interaction. Emotional strain . Caregivers also described experiencing emotional strain as a result of stigma by association. This strain, distinct from shame, encompassed the physical and mental toll of worry and helplessness about their child’s condition and the associated stigma. Participants noted that this distress impacted not only their mental health but also their physical well-being, sometimes interfering with their ability to care for their child. One participant explained: “My wife cannot eat, she has lost her appetite due to the condition of our child, and she is seriously losing weight.” (Group 5, Participant 3) Coping. The second category identified in caregivers' responses to stigma by association is coping, which refers to strategies caregivers employed to navigate the challenges of stigma while maintaining their emotional well-being and caregiving responsibilities. Subcategories of coping include focusing on positive interactions, spiritual reframing, maintaining hope in a cure , and ignoring . Focusing on positive interactions . Several caregivers described finding moments of joy in their daily lives with their children as a way to cope with stigma. These moments often involved engaging in playful or affectionate activities, which helped strengthen the bond between the caregiver and child and created a sense of positivity. One participant recounted how laughter became an important part of their interactions: “Usually when I used to wash him and crack jokes with him, playing with his jaw, he will burst into laughter. Some will even ask, ‘Is that child the one laughing so loudly?’ People used to ask whenever I play with him if it is really him who laughs so loudly.” (Group 4, Participant 7) In several FGDs, caregivers reported about such interactions, providing them with a sense of fulfillment and reinforcing their commitment to caring for their child in the face of societal stigma. Spiritual reframing . Spiritual beliefs were described by caregivers as a central coping mechanism, allowing them to deal with the stigma associated with their child’s disability. Caregivers described upholding beliefs that their child’s condition as part of God’s plan, suggesting that the child’s existence had a divine purpose. This perspective provided caregivers with a counter-narrative to the stigmatizing views imposed by their communities and attach meaning to their experiences, as the following quotes illustrate: “It is God that gave me her, it is the God that will help me to sustain her.” (Group 1, Participant 4) Additionally, caregivers in our sample emphasized the belief that their child was a divine gift, fostering a sense of acceptance and love. This positive reframing was described as helping them to focus on their child’s inherent worth and reinforced their commitment to caregiving despite societal judgment. One participant described: “We believe when God has given us this kind of person, we should take good care of them and give them the same love we give the others who are not disabled and assure them they are going to be the same.” (Group 2, Participant 5) Despite accepting their child’s conditions, the great majority of our participants expressed hope for a cure , attributing this hope to various sources, including divine intervention, medical advancements, or a combination of forces. This hope enabled caregivers to sustain their efforts and focus on the future while managing current challenges. “I have faith that my child will walk and that my child is not a demon. She will get up one day and start to walk.” (Group 1, Participant 5) Ignoring negative comments or attitudes from others was described as another coping mechanism. By choosing not to engage with stigmatizing behavior, caregivers attempted to protect their emotional well-being and maintain a sense of control in social situations. One participant explained: “Like when there is a birthday and you say, ‘What about my child?’ They will say, ‘That one is not walking.’ … They look at her as if she is not a good child. So, you think when a person can not walk that means she is not good? These times, I just look at them and ignore.” (Group 1, Participant 1) Ignoring negative remarks was described to serve as a way to disengage from stigma while maintaining composure and not losing face. Resisting. The third category identified in caregivers' responses is resisting, which captures actions caregivers took to challenge stigma and advocate for their children. Subcategories of resisting include challenging superstitious beliefs and practices, showing the child in public , and expressing public anger . Challenging superstitious beliefs and practices . Caregivers described efforts to counteract harmful beliefs about disability by rejecting superstitions and advocating for a more informed understanding of their child’s condition. One participant shared how they refused to conform to traditional healing practices: “In my area, some people are saying it’s witches or maybe one family member who hates us has done this to us, or they have pushed him to witchcraft. [They say] that I should go to a traditional healer. I said no, this is what God gave me. I will not go to a traditional healer.” (Group 1, Participant 7) In addition to rejecting superstitions, some caregivers educated others about the nature of their child’s condition. By explaining the medical basis for disability, they sought to challenge misconceptions and reduce stigma. One participant recounted: “They [neighbors] normally said she is a devil child, do not go close to her, do not go near my child so the demon does not transfer. … I do tell people it does not transfer because if it was that way, I should have gotten it a long time ago or her elder sister should have contracted it. … Now I am seeing that they encourage her, she is going close to them, and they sit and talk with her.” (Group 1, Participant 5) Showing the child in public . Various participants also described taking their child into public spaces as a way of challenging societal misconceptions and asserting their child’s rightful place in the community. By doing so, they hoped to inspire acceptance and demonstrate pride in their child. One participant explained: “I believe that the more we have the courage to take our children out, the more the community will have courage and will help them and accept the situation as it is. After all, it is a decision from God, and if you have courage to not hide your child, it is in that situation that God will bring a solution for you.” (Group 6, Participant 6) This act of visibility served as a form of advocacy, encouraging others to reconsider their attitudes toward CLWDs. Expressing public anger . Two participants also described instances where they confronted individuals in their communities who perpetuated stigma. By expressing anger publicly, they aimed to resist discrimination and create an environment where the child and caregiver could live without fear of ridicule. A mother of CLWD explained: “I used to talk back to people, I sometimes got into serious confrontations between me and people in the community who spoke badly about my child. … It got better, and no one from my community speaks badly about my child to me anymore.” (Group 5, Participant 2) Summary for RQ 2 In response to the experiences of stigma by association, caregivers of CLWDs in our study employed three overarching types of responses: withdrawing, coping, and resisting. Withdrawing primarily involved actions and emotions aimed at minimizing exposure to societal judgment. The coded extracts from the data often reflected an inward focus, where caregivers sought to protect themselves and their children by retreating from public spaces or interactions. Coping , in contrast, was characterized by adaptive strategies aimed at maintaining emotional well-being and caregiving responsibilities. These responses tended to reflect resilience, demonstrating caregivers' efforts to find meaning and positivity despite the stigma they faced. Resisting represented a more proactive and outward-facing response, involving direct actions to challenge stigma, reshaping societal attitudes and asserting their child’s place within the community. Across these categories, coping and its subcategories were mentioned most frequently by participants, suggesting that many caregivers leaned on adaptive strategies as their primary mode of managing stigma. However, participants’ responses also appeared to vary based on the specific situations they encountered. For instance, withdrawing might have been more common in moments of heightened societal judgment, while resisting was employed when caregivers felt compelled to defend or advocate for their child. Caregivers’ experience and wishes for social support (RQ3) This section presents the findings on caregivers’ experiences and wishes for social support, categorized into empathy and awareness, practical support for daily needs, social inclusion , and encouragement . Empathy and awareness . Participants emphasized the need for empathy and a deeper understanding of their family’s situation from those around them. Caregivers noted that while they encountered moments of sympathy and recognition, many expressed a desire for greater awareness within their communities to reduce stigma and foster acceptance. One participant shared how helpful it was to her, knowing that those around her accepted her child’s disability as an illness: “Like for me, they [community] know it’s a disease and everyone is feeling sorry for me because most of them know it is a disease. No one points a finger at me; they feel sorry for me. They say, ‘This child that was strong, was dancing, now she is not walking anymore,’ and they all know it is a disease. … It’s not easy, but it makes me feel better.” (Group 1, Participant 2) Practical support for daily needs . Caregivers described the overwhelming demands of caregiving and their need for practical, hands-on support to ease their daily responsibilities as a form of socially desired support. Many felt that assistance with caregiving tasks, such as childcare or household chores, would also help with the emotional strain they experienced. As one caregiver explained: “The other support that I would need is if someone could offer to take these children from me and help me to take care of them. That is a venture that I will strongly appreciate.” (Group 4, Participant 1) The importance of social inclusion was often mentioned in our study, as participants described how invitations to community events provided a sense of belonging for both their children and themselves. Being included in these activities signified that their children were valued members of the community, which fostered acceptance and strengthened social ties. “When there is something in the community for children, they will invite him. There is that concern for him in this new community. I thank God for that.” (Group 6, Participant 3) “For birthdays, in school and church, I want my child to be part of this” (Group 5, Participant 1) Such inclusion in social events allowed CLWDs to engage socially and develop relationships as well as reducing the caregivers sense of isolation. Encouragement from the community emerged as another form of support. Participants described how positive reinforcement and advice to remain committed to their caregiving responsibilities motivated them and reaffirmed their efforts. Moreover, some participants expressed that encouragement offered emotional validation and a sense of solidarity among parents as caregivers, as the following quote shows: “In my new community, the people there are very much accommodating to my child. People even used to advise that I should not relent in providing care for my child as I may not know what the future holds for me. … It lifts me up when they say such words.” (Group 6, Participant 5) Summary for RQ 3 Caregivers of CLWDs in our study expressed diverse experiences and wishes for social support, encompassing empathy and awareness, practical support for daily needs, social inclusion, and encouragement. They highlighted the importance of community understanding as well as the need for hands-on assistance to ease caregiving burdens. Invitations to community events fostered social inclusion and a sense of belonging, while words of encouragement provided emotional strength and motivation. We found mixed views in our data – most participants had experienced some form of support, but there was an overall wish for more comprehensive and holistic social support that addresses both practical and emotional needs, fostering a more inclusive and understanding community for caregivers and their children. Discussion Recap of study objectives and key findings This study aimed to explore the experiences of stigma by association among caregivers of children living with disabilities (CLWDs) in Sierra Leone. Using focus group discussions with caregivers, we sought to investigate what forms of stigma by association caregivers of CLWDs experience, the strategies caregivers employ to navigate stigma by association, and the support systems they rely on or desire. Most caregivers in our sample were caring for children with cerebral palsy, a condition acquired prenatally, during birth, or shortly after. Cerebral palsy’s unclear etiology within local frameworks of understanding leaves it particularly vulnerable to supernatural explanations, such as curses, moral failings, divine punishment or bad luck, that could extend to or affect others, and consequently stigmatization of both the child and the caregivers. Our findings confirmed the multifaceted, pervasive nature of stigma by association, with caregivers experiencing various forms, such as abusive language, labeling, avoidance, and enforced conformity to traditional practices as also found by Yoder and colleagues (2016). Our study shows that stigma by association in Sierra Leone is socially normalized and embedded in everyday conversations [ 8 , 19 ], which underscores the nature of stigma as a relational process. This reflects patterns observed in other contexts where disability is stigmatized [ 18 , 72 , 73 ]. Despite the widespread stigma, caregivers in our sample described a variety of responses in dealing with their stigma. Coping strategies were particularly prevalent, with many caregivers relying on spiritual reframing to reinterpret their child’s condition as part of God’s plan or a divine blessing. This aligns with previous research highlighting the role of religious beliefs in mitigating stigma in comparable cultural contexts [ 11 , 21 ]. Notably, many study participants also expressed a deep acceptance of their children, focusing on positive interactions and rejecting societal negativity. This acceptance is noteworthy, given the cultural narratives around disability in which these caregivers were socialized and presumably had internalized such beliefs themselves. It highlights their capacity to adapt and reconcile societal constructs with their lived experiences, even within highly stigmatizing environments [ 74 ]. However, it is important to consider that the caregivers in this study were those who actively sought support for their children and were willing to participate in focus group discussions. This may indicate a self-selecting group with greater openness to accepting their child's condition, a point further discussed in the study’s limitations. Resistance strategies, though less common than coping, were another noteworthy finding. Caregivers described educating others about their child’s condition, rejecting superstitions, and advocating for inclusion. These acts of resistance challenge societal norms and may reflect a shift toward empowerment and advocacy, despite the societal risks associated with confronting deeply ingrained cultural beliefs. The presence of such strategies in a context where conformity with the collective is valued highlights the caregivers’ agency and the potential for social change [ 75 ]. Social support, or the lack thereof, emerged as a critical theme in caregivers’ experiences within our study, a finding present also in other studies [ 40 , 70 ]. While some caregivers described moments of empathy and inclusion, such as invitations to community events, these instances appeared to be isolated and insufficient. Most caregivers expressed a desire for more holistic and consistent support, including practical assistance with caregiving responsibilities and greater awareness within their communities. This aligns with broader research emphasizing the importance of social inclusion and practical support in mitigating the impacts of stigma [ 7 , 76 , 77 ]. Theoretical and practical implications This study contributes to the theoretical understanding of stigma by association by emphasizing the compounded nature of stigma experienced by caregivers in contexts where cultural narratives link disability to moral failings or supernatural causes [ 21 ]. While existing theories often focus on stigma as a relational dynamic between the stigmatized individual and their social environment [ 17 , 53 , 78 ], our findings highlight the additional layer of blame and responsibility attributed to caregivers [ 41 ]. This dual stigma – comprising both association with the child and blame for their condition – requires theoretical frameworks to incorporate cultural and spiritual beliefs as variables influencing stigma’s enactment and internalization. For instance, integrating constructs from the social-ecological model could provide a more nuanced understanding of how societal structures, cultural narratives, and individual coping mechanisms interact to shape the lived experiences of caregivers [ 4 , 23 ]. By addressing these intersections, future theories can better account for the compounded effects of stigma in diverse cultural contexts, ultimately improving their relevance and applicability in global disability studies. The findings of this study suggest strategies to support caregivers of CLWDs that are culturally and contextually sensitive. Interventions could prioritize community-level engagement to encourage inclusive narratives around disability, fostering greater empathy and understanding [ 77 , 79 ]. For example, facilitating dialogues that draw on existing cultural frameworks to present disability as a natural or divine variation may help reduce stigma while respecting local beliefs [ 41 ]. Practical strategies might include developing caregiver peer networks and counseling that provide emotional support and shared advocacy opportunities, recognizing the importance of solidarity in mitigating stigma. Additionally, community-led initiatives that increase caregivers’ visibility and inclusion – such as social events or collective projects – could help normalize their participation and challenge exclusionary practices [ 79 , 80 ]. Collaborating with local organizations and stakeholders can ensure that such efforts are grounded in the specific needs and cultural contexts of the communities they serve. Limitations and future research This study provides valuable insights into the experiences of stigma by association among caregivers of CLWDs in Sierra Leone. However, several limitations should be noted. First, while we strived to approach this research with cultural awareness and empathy, we recognize that, as researchers who have not personally experienced these intersecting stigmas, our interpretations are inevitably shaped by our positionality. Second, our overall relatively small sample predominantly consisted of female caregivers (84%), reflecting caregiving norms in Sierra Leone, but limiting exploration of gendered differences in stigma experiences. Future research could investigate how male caregivers experience and respond to stigma. Third, a potential selection bias may have influenced the findings, as most participants expressed positive attitudes toward their children. Caregivers struggling with internalized stigma or negative beliefs, such as viewing the child’s condition as a curse, may have been underrepresented. Fourth, this study was conducted in Freetown, the capital city, and does not capture the experiences of caregivers in rural or remote areas, where access to education and healthcare is more limited and traditional beliefs about disability may be even more deeply ingrained. Fifth, for ethical reasons, we did not directly ask caregivers whether they felt personally responsible for their child’s condition, nor did we probe deeply into the spiritual or cultural beliefs they may have internalized in the context of a group setting. While some participants reported being blamed for their child’s disability, their own sense of culpability remains unexplored. Future studies could sensitively examine the dynamics of dual stigma, including internalized guilt. Additionally, the experiences of CLWDs themselves were not included, leaving a gap in understanding how children perceive stigma and their caregivers' responses. Finally, this study captured experiences at a single point in time, leaving questions about how stigma and coping strategies evolve over the long term. Research on protective factors, such as community characteristics or access to formal support systems, could also shed light on why some caregivers report less stigma. Evaluating community-based interventions to reduce stigma and support caregivers would be another valuable area for future research. Conclusion This focus group study focused on stigma by association experienced by caregivers of CLWDs in Sierra Leone. Caregivers detailed experiences of labeling, avoidance, and societal blame rooted in cultural and spiritual beliefs about disability, revealing the profound social challenges they face. Despite these obstacles, caregivers demonstrated resilience and agency, employing strategies to navigate stigma, including coping through spiritual reframing and, in some cases, resisting societal prejudices. The findings underscore the need for greater understanding and support for caregivers, including interventions that address practical needs and foster social inclusion. By amplifying the voices of caregivers, this study contributes to the broader discourse on stigma, disability, and caregiving, offering insights to inform inclusive policies and culturally sensitive interventions. Abbreviations CLWD Children living with disabilities ETC Enable the Children FGD Focus group discussion PLWD People living with disabilities RQ Research question Declarations Ethics approval and consent to participate The research project was granted ethical clearance by the ethical board of the Sierra Leone Ethics and Scientific Review Committee (No. 14.08.2021). Prospective participants from all samples received an information sheet, detailing their role, rights, type of data collection, data protection, and a consent form. Informed consent was obtained from all research participants. Invitations to attend any of the study components were extended to participants solely upon receipt of their signed consent forms. All our procedures have been performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments. Clinical trial Clinical trial number: not applicable Consent for publication Written consent for publication was obtained from all study participants. Availability of data and materials The datasets used during the current study are available from the corresponding author on reasonable request. Competing interests The authors report no conflict of interest. The authors alone are responsible for the content and writing of the paper. Funding The research was funded by generic funds raised by World Hope International for the Enable the Children program. Sources of these generic funds included individuals, churches and foundations based in the United States. Authors’ contributions EA conceived of the study design, supported by HLL. EA and FB collected the data, with supervision from AV. HLL and SK analyzed the data, HLL drafted the article. CR contributed to the analytical approach for data analysis. All authors commented on the paper drafts and approved the final manuscript. 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Zuurmond M, Seeley J, Nyant GG, Baltussen M, Abanga J, Polack S, et al. Exploring caregiver experiences of stigma in Ghana: They insult me because of my child. Disability & Society. 2022;37:827–48. doi:10.1080/09687599.2020.1851172. Stone-MacDonald A, Digman Butera G. Cultural Beliefs and Attitudes about Disability in East Africa. Review of Disability Studies. 2014;8. May-Machunda PM. Living in the Nexus of Disability and Caregiving: An African American Parental Caregiver's Critical Observations as a Folklorist. Journal of American Folklore. 2024;137:354–66. doi:10.5406/15351882.137.545.08. Becerra Carrillo N, Guasconi M, Barello S. The Impact of Caregiver Affiliate Stigma on the Psychosocial Well-Being of Caregivers of Individuals with Neurodegenerative Disorders: A Scoping Review. Healthcare (Basel) 2024. doi:10.3390/healthcare12191957. Gronholm PC, Henderson C, Deb T, Thornicroft G. Interventions to reduce discrimination and stigma: the state of the art. Soc Psychiatry Psychiatr Epidemiol. 2017;52:249–58. doi:10.1007/s00127-017-1341-9. Hartog K, Hubbard CD, Krouwer AF, Thornicroft G, Kohrt BA, Jordans MJD. Stigma reduction interventions for children and adolescents in low- and middle-income countries: Systematic review of intervention strategies. Soc Sci Med. 2020;246:112749. doi:10.1016/j.socscimed.2019.112749. Bos AER, Pryor JB, Reeder GD, Stutterheim SE. Stigma: Advances in Theory and Research. Basic and Applied Social Psychology. 2013;35:1–9. doi:10.1080/01973533.2012.746147. Hearst MO, Adelli R, Hepperlen R, Biggs J, DeGracia D, Ngulube E, et al. Community-based intervention to reduce stigma for children with disabilities in Lusaka, Zambia: a pilot. Disabil Rehabil. 2022;44:2295–304. doi:10.1080/09638288.2020.1829105. Smythe T, Adelson JD, Polack S. Systematic review of interventions for reducing stigma experienced by children with disabilities and their families in low- and middle-income countries: state of the evidence. Trop Med Int Health. 2020;25:508–24. doi:10.1111/tmi.13388. Additional Declarations No competing interests reported. Supplementary Files SupplementaryMaterialExperiencingandRespondingtoStigma.pdf Cite Share Download PDF Status: Published Journal Publication published 20 Jun, 2025 Read the published version in Scientific Reports → Version 1 posted Editorial decision: Revision requested 19 May, 2025 Reviews received at journal 05 May, 2025 Reviewers agreed at journal 22 Apr, 2025 Reviews received at journal 13 Mar, 2025 Reviewers agreed at journal 10 Mar, 2025 Reviewers invited by journal 10 Mar, 2025 Editor assigned by journal 10 Mar, 2025 Editor invited by journal 12 Feb, 2025 Submission checks completed at journal 11 Feb, 2025 First submitted to journal 10 Feb, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5999892","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Article","associatedPublications":[],"authors":[{"id":414939207,"identity":"caac68f1-8cc1-4b4c-b52e-a44f212c47be","order_by":0,"name":"Hanna Luetke Lanfer","email":"data:image/png;base64,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","orcid":"","institution":"Bielefeld University","correspondingAuthor":true,"prefix":"","firstName":"Hanna","middleName":"Luetke","lastName":"Lanfer","suffix":""},{"id":414939208,"identity":"6b775957-8575-4a8b-922a-4ae680ca657d","order_by":1,"name":"Elizabeth Anderson","email":"","orcid":"","institution":"Enable the Children, World Hope International","correspondingAuthor":false,"prefix":"","firstName":"Elizabeth","middleName":"","lastName":"Anderson","suffix":""},{"id":414939209,"identity":"e7960fc9-2514-4b02-b524-dfa14259ef8d","order_by":2,"name":"Fatmata Bah","email":"","orcid":"","institution":"","correspondingAuthor":false,"prefix":"","firstName":"Fatmata","middleName":"","lastName":"Bah","suffix":""},{"id":414939210,"identity":"416135c8-4177-4226-abee-713697e745cb","order_by":3,"name":"Sarah Krawiec","email":"","orcid":"","institution":"Bielefeld University","correspondingAuthor":false,"prefix":"","firstName":"Sarah","middleName":"","lastName":"Krawiec","suffix":""},{"id":414939211,"identity":"3c01e31e-2006-494b-89da-ab7aaa9f212d","order_by":4,"name":"Constanze Rossmann","email":"","orcid":"","institution":"LMU Munich","correspondingAuthor":false,"prefix":"","firstName":"Constanze","middleName":"","lastName":"Rossmann","suffix":""},{"id":414939212,"identity":"2eb2de79-1d64-49ea-8ccc-3079ae9ef7a5","order_by":5,"name":"Anna Vines","email":"","orcid":"","institution":"Enable the Children, World Hope International","correspondingAuthor":false,"prefix":"","firstName":"Anna","middleName":"","lastName":"Vines","suffix":""}],"badges":[],"createdAt":"2025-02-10 14:08:20","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5999892/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5999892/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1038/s41598-025-07034-1","type":"published","date":"2025-06-20T15:56:54+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":85231260,"identity":"eba56236-ad3a-413b-93b4-b8690bfb04fb","added_by":"auto","created_at":"2025-06-23 16:01:49","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1002441,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5999892/v1/d582b11f-7a13-4532-9162-57c315bc0caa.pdf"},{"id":76195077,"identity":"8e76f643-159f-4dcc-9a80-ba22e93001bd","added_by":"auto","created_at":"2025-02-13 10:17:10","extension":"pdf","order_by":4,"title":"","display":"","copyAsset":false,"role":"supplement","size":115132,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryMaterialExperiencingandRespondingtoStigma.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5999892/v1/1d29745a828d15e8b7428d07.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Experiencing and Responding to Dual Stigma: A Focus Group Study with Caregivers of Children Living with Disabilities in Freetown, Sierra Leone","fulltext":[{"header":"Introduction","content":"\u003cp\u003eStigma refers to a distinguishing \u0026quot;mark\u0026quot; that differentiates individuals based on specific attributes, characteristics, conditions, or behaviors, often framing them as deviations from societal norms \u0026nbsp;[1\u0026ndash;4]. These marks, however, are not inherently positive or negative. Instead, through social processes, they acquire meaning, leading to the attribution of value or disvalue depending on the cultural and relational context [4]. Stigma thus operates as a socially constructed phenomenon, simultaneously affirming the \u0026ldquo;normalcy\u0026rdquo; of some while marginalizing others [1, 4]. A trait that stigmatizes one person hence affirms the normalcy of another, illustrating that stigma is constructed within social and relational contexts [1, 4]. Stigma operates on multiple levels: through societal structures, interpersonal interactions, and internalized beliefs, profoundly shaping the experiences, opportunities, and well-being of those affected [5\u0026ndash;8].\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eDisability \u0026ndash; whether visible or invisible \u0026ndash; has historically been framed as a mark. Disability has often been constructed as a deviation from societal norms and stigmatized across different societies and historical periods [9, 10] as societal expectations of able-bodied norms create frameworks that casts persons living with disabilities (PLWDs) as deviant or burdensome [11, 12]. While research on stigma has traditionally focused on the direct experiences of stigmatized individuals, such as PLWDs [13], stigma also extends to those associated with the stigmatized \u0026ndash; families, caregivers, and close connections \u0026ndash; leading to what is termed stigma by association [14\u0026ndash;16]. Caregivers of persons with disabilities often face forms of social marginalization similar to those experienced by PLWDs, leading to affiliate stigma, the internalization of negative beliefs about the associated stigma [16, 17]. This phenomenon is particularly pronounced in cultural contexts where disability is imbued with additional layers of meaning.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn Sierra Leone, disabilities \u0026ndash; especially those by birth or acquired without an accident \u0026ndash; have been interpreted through a cultural lens that associates them with curses, sin, or moral failings within the family [11, 18, 19]. This belief system then stigmatizes the individual with a disability but also extends to parents, who may be held responsible or blamed for the condition [13, 18, 20]. Studies from other settings with similar cultural frameworks have shown that parents and other family caregivers deal with the practical challenges of caring for a person with a disability and stigma by association as well as with the public stigma implicitly or explicitly associated with being held accountable for their child\u0026rsquo;s condition [16, 21].\u003c/p\u003e\n\u003cp\u003eResearch on the needs and experiences of stigma of people living with disabilities in Sierra Leone remains underexplored, even more so the experiences of their caregivers. In our study, we aim to respond to this gap in the literature by exploring what forms of stigma caregivers of children living with disabilities (CLWD) in Sierra Leone experience due to their children\u0026rsquo;s conditions and how they respond to them. By focusing on the caregivers\u0026apos; perspectives, this research seeks to shed light on how stigma by association is enacted as it intersects with sociocultural beliefs about disability. Understanding these experiences is crucial for developing interventions that address not only the needs of individuals with disabilities but also those of the families who support them.\u003c/p\u003e"},{"header":"Background","content":"\u003cdiv id=\"Sec2\" class=\"Section2\"\u003e \u003ch2\u003eConceptual overview of stigma\u003c/h2\u003e \u003cp\u003eThe term \u0026lsquo;stigma\u0026rsquo; originates from Ancient Greece, where it referred to physical marks branded onto individuals, such as slaves, to signify their inferior social status and to mark them as objects of exclusion from societal privileges [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Over time, the concept evolved beyond physical markings to encompass a broader social and symbolic process of discrediting individuals or groups based on attributes or conditions perceived as deviating from societal norms [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Stigma manifests in social interactions, hence when society identifies a difference, labels this as negative and differentiates between those with and without the mark [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Addison (2023) therefore suggests conceptualizing stigma as a verb to emphasize that it is enacted between people and gains its meaning relationally. Stigma functions as a mechanism of social control by discouraging nonconformity with the norm (e.g., ostracizing individuals with unconventional lifestyles), upholding the values of a given society (e.g., emphasizing economic productivity and performance as ideals, often marginalizing those unable to meet these standards), and facilitating social cohesion between those who adhere to the dominant norm (e.g., fostering in-group solidarity by excluding or marginalizing those with disabilities) [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan additionalcitationids=\"CR24\" citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eStigma is not a static label but a dynamic process rooted in historical, socioeconomic and cultural contexts [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. How and whether a certain attribute is perceived, (dis)credited, and constructed as stigma, is highly context-dependent and contingent on cultural values and societal power dynamics that can change [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. The attributes themselves are not inherently positive or negative; rather, they are assigned value through social processes. Historically, disability has been framed as a personal tragedy, moral failing, or sign of spiritual disharmony, justifying stigmatization and social exclusion [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. The medical model, which dominated the 19th and 20th centuries, reinforced this deficit-based view by framing disability as problematic, requiring treatment or cure and thereby further marginalizing PLWDs [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Over time, the social model of disability emerged, reframing disability as the result of societal and environmental barriers, such as inaccessible infrastructure and discriminatory practices, rather than individual impairments [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. This reframing positions disability as arising from the failure of societies to accommodate diverse needs, rather than from inherent limitations within individuals. Although the World Health Organization\u0026rsquo;s definition of disability as well as international policies reflects this shift, institutionalization, exclusion, and dependency-based frameworks remain prevalent and continue to perpetuate the marginalization of PLWDs [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Moreover, in many capitalistic, achievement-oriented societies that prioritize able-bodied norms, disability continues to be perceived as a marker of difference or inferiority within societies, as success and economic contribution are often narrowly defined through productivity, independence, and physical or cognitive performance [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eTypes and levels of stigma\u003c/h2\u003e \u003cp\u003eGoffman (1963) identified three primary types of stigma: 1) visible stigma, 2) acquired stigma, and 3) tribal stigma. 1) Visible stigmas are those immediately apparent to others, such as physical disabilities or disfigurements. These stigmas often provoke immediate reactions and judgments, as they disrupt societal expectations of \u0026lsquo;normalcy\u0026rsquo; in appearance or function [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. For example, individuals with conditions like Down syndrome, cerebral palsy or physical impairment needing a wheelchair may face gazes as their visible mark draws attention and reinforces societal discomfort with physical or cognitive differences [\u003cspan additionalcitationids=\"CR33 CR34\" citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. 2) Acquired stigmas are associated with behaviors, conditions, or life circumstances that develop over time, such as mental illness, addiction, or chronic illness, which may result in disability. These stigmas are often intertwined with moral judgments, as they are perceived to be within an individual\u0026rsquo;s control, whether accurately or not [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. 3) Tribal stigmas are tied to certain group affiliations, such as race, ethnicity, religion, or cultural identity, some of which are visible whereas others are not [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. Tribal stigma is often inherited or culturally transmitted [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. In contexts like Sierra Leone, disability is sometimes intertwined with cultural and spiritual beliefs, where individuals with congenital conditions are stigmatized as bearing ancestral curses or signs of witchcraft [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. These types of stigma are not mutually exclusive and often intersect in complex ways [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. For example, an individual with a visible physical disability who is also a member of a racially marginalized group may experience layered or compounded stigmatization that amplifies their social exclusion [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eFurthermore, stigma operates at multiple, interconnected levels \u0026ndash; public, individual, and structural \u0026ndash; each influencing and reinforcing the others [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Public stigma, also referred to as interpersonal or social stigma, emerges through collective attitudes, behaviors, and social interactions and serves as the foundation for other forms of stigma [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e, \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e]. It reflects societal norms that define certain traits, conditions, or behaviors as deviant, shaping how individuals perceive and react to groups that do not possess the desired characteristics. For example, public stigma continues to be evident in derogatory language for disabilities, such as cripple or crazy [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e]. These public perceptions and reactions have shown to fuel individual-level stigma, where negative stereotypes become internalized within the person not conforming with the dominant norm [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, \u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e]. Self-stigma due to experiencing public stigma has been associated with psychological distress, anxiety, stress and lowered quality of life experience [\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e]. Structural stigma, where discrimination is embedded within societal policies and institutions, manifests in inaccessible public spaces, limited disability-specific healthcare, and inadequate educational provisions for CLWDs [\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e, \u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e]. While these levels are conceptually distinct, they frequently intersect, creating a compounding effect on the lives of those who are stigmatized. The intersection of structural and public stigma, for instance, can amplify the exclusion of individuals with disabilities, as public attitudes shape institutional policies that fail to address their needs adequately [\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e, \u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eStigma by association and affiliate stigma\u003c/h3\u003e\n\u003cp\u003eStigma is not limited to individuals directly marked by a discrediting trait; it extends to those associated with stigmatized persons, such as caregivers [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. This phenomenon, referred to as stigma by association or courtesy stigma, highlights how societal perceptions of deviance can \u0026lsquo;spill over\u0026rsquo; to those in close relationships with stigmatized individuals, such as family ties, friendships, or even professional associations [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e]. Stigma by association reflects the external, relational dynamics of being connected to a stigmatized individual, manifesting through public blame, judgment, and social exclusion. Birenbaum (1970) describes those associated with a stigmatized person as \u0026ldquo;\u0026lsquo;normal\u0026rsquo; yet \u0026lsquo;different\u0026rsquo;. Their normality is obvious in their performance of conventional social roles; their differentness is occasionally manifested by their association with the stigmatized during encounters with normal\u0026rdquo; (p. 196). Thus, a central distinction between primary stigma and stigma by association lies in its visibility. For individuals with stigmatized attributes, visibility often is a defining feature of their stigma, whether immediately apparent or revealed over time. For stigma by association, however, the visibility of the stigma is contingent upon their proximity to the stigmatized person [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e]. For instance, when caregivers are with their child who has a disability, they may be subject to public stigma, including intrusive questions or overt discrimination [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Yet, in contexts where the child is absent, caregivers can, to some extent, escape the immediate effects of stigma by association and decide whether to disclose or not their association with the stigmatized person [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e]. This situational fluidity contrasts with the experiences of the stigmatized individual, whose attributes remain largely constant regardless of context [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. However, even in the absence of the child, caregivers may carry the internalized effects of the stigma by association [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e]. This process is referred to as affiliate stigma, the internal psychological impact on caregivers as they internalize societal prejudices and stereotypes about the stigmatized individual independent of public scrutiny, leading to feelings of guilt, shame and stress as multiple studies show (e.g., [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan additionalcitationids=\"CR57 CR58 CR59\" citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e]). Affiliate stigma may be heightened when cultural or religious beliefs associate the child\u0026rsquo;s condition with supernatural forces, such as curses or parental wrongdoing. These beliefs not only stigmatize the child but also intensify feelings of shame and blame among caregivers, as they are perceived to bear responsibility for the disability [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e]. For instance, a study among 102 caregivers of children living with intellectual disabilities in Ethiopia revealed that almost half of the participants felt ashamed of their child's condition and more than a quarter attempted to keep their child's condition a secret [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e].\u003c/p\u003e\n\u003ch3\u003eDisability in Sierra Leone\u003c/h3\u003e\n\u003cp\u003eDisability in Sierra Leone encompasses a broad range of conditions, including physical impairments (e.g., amputations from war injuries or mobility limitations from accidents exacerbated by unsafe working and living conditions common in Sub-Saharan Africa), sensory disabilities (e.g., blindness and deafness), and intellectual and developmental disabilities (e.g., cerebral palsy, Down syndrome, and autism) [\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e]. Moreover, while chronic illnesses, such as diabetes or sickle cell disease, are not disabilities in themselves, they can result in disabling conditions over time when untreated or poorly managed [\u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e]. The exact prevalence of disability in Sierra Leone remains unclear due to unreliable data collection and a lack of comprehensive surveys. Reports suggest that the needs of PLWDs are \u0026ldquo;grossly underestimated,\u0026rdquo; highlighting significant gaps in understanding and addressing disability in Sierra Leone (UN Partnership on the Rights of Persons with Disabilities (UNPRPD), 2022, p. 16). This mirrors trends across Sub-Saharan Africa, where a high proportion of the population experiences disability and chronic illnesses, often without adequate access to healthcare or support systems [\u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e, \u003cspan citationid=\"CR65\" class=\"CitationRef\"\u003e65\u003c/span\u003e]. These conditions are further compounded by the socio-political and cultural environment, which influences how disability is understood and experienced [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e, \u003cspan citationid=\"CR67\" class=\"CitationRef\"\u003e67\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDisability in Sierra Leone is shaped by a complex interplay of historical, cultural, and socio-political factors. The legacy of the civil war (1991\u0026ndash;2002) influenced how different types and forms of disability are perceived and experienced, as Berghs and Dos Santos-Zingale (2011) concluded from their anthropological work. During and after the conflict, individuals with war-related disabilities, such as amputations, categorized themselves as \u0026lsquo;victims\u0026rsquo; to access resources and support whereas the label \u0026lsquo;disabled\u0026rsquo; was often associated with social devaluation and dependency [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR68\" class=\"CitationRef\"\u003e68\u003c/span\u003e]. The \u0026lsquo;victim label\u0026rsquo; was seen as more socially acceptable and aligned with reparative justice frameworks, and war amputees have received considerable international attention, leading to the establishment of long-lasting support structures and advocacy groups [\u003cspan citationid=\"CR69\" class=\"CitationRef\"\u003e69\u003c/span\u003e]. In contrast, individuals with other disabilities have not benefited from similar levels of support or say in defining their public image (ibid). Moreover, especially congenital or early-onset conditions continue to be rooted in traditional and religious beliefs, such as viewing disability as a curse or divine punishment [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR70\" class=\"CitationRef\"\u003e70\u003c/span\u003e]. These beliefs hence also extend the condition to the family, especially parents, of the PLWD who might be perceived as bearing responsibility for the condition [\u003cspan citationid=\"CR71\" class=\"CitationRef\"\u003e71\u003c/span\u003e]. Additionally, they can result in stigma, prejudices, and social exclusion from social and economic participation for both the PLWD and their caregivers, especially for conditions like cerebral palsy that occur before, during or shortly after birth [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan citationid=\"CR71\" class=\"CitationRef\"\u003e71\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eTo our knowledge, the compounded stigma by association of caregivers of CLWDs has never been explored in Sierra Leone. This context, where certain disabilities are attributed to supernatural causes and caregivers may experience stigma by association and direct blame for their child\u0026rsquo;s condition, presents a unique opportunity to examine how stigma by association operates when compounded with societal perceptions of responsibility for disability. Hence, to address these complex and underexplored dynamics, this study was guided by the following research questions:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eRQ1: In what ways do caregivers of CLWDs in Sierra Leone experience stigma by association?\u003c/p\u003e\u003cp\u003eRQ2: In what ways do caregivers of CLWDs in Sierra Leone respond to stigma by association?\u003c/p\u003e\u003cp\u003eRQ3: What social support do caregivers of CLWDs in Sierra Leone experience and wish for?\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eStudy design\u003c/h2\u003e \u003cp\u003eTo explore experiences of stigma by association of caregivers with CLWDs in Sierra Leone, focus groups were conducted with caregivers of CLWDs. This study was conducted within the context of ongoing efforts to understand and address the challenges faced by caregivers of CLWDs in Freetown, Sierra Leone. It was designed as an exploratory study, serving two purposes: first, to provide preliminary insights and evidence for a larger research grant application aimed at developing comprehensive interventions; and second, to contribute to the ongoing work of the NGO, World Hope International\u0026rsquo;s Enable the Children (ETC) program. This organization provides physiotherapy, occupational therapy, and psychosocial support services to CLWDs and their caregivers across Freetown. ETC covered costs related to the contracted researcher and participant incentives (e.g., snacks). All other contributors volunteered their time without dedicated funding.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eRecruitment\u003c/h2\u003e \u003cp\u003eGiven the role stigma plays in shaping the experiences of caregivers, this study specifically sought to engage those who had not yet been supported by ETC, as their perspectives could provide unique insights into the challenges faced before accessing formal support systems. To reach this group, the following recruitment approach was taken. ETC collaborates with several hospitals across Freetown, where their presence ensures a connection to CLWDs and their caregivers when they present themselves for medical care. Healthcare staff at these hospitals, upon identifying CLWDs whose conditions might benefit from ETC\u0026rsquo;s therapy services, provide referrals to the organization. As part of this process, caregivers who received a recommendation from hospital staff were then contacted by ETC personnel. During these initial interactions, caregivers were informed about the research project and invited to participate. Recruitment and data collection took place from November 2020 to January 2021.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eData collection\u003c/h3\u003e\n\u003cp\u003e After establishing contact, all participants received an information sheet outlining the project\u0026rsquo;s objectives, data processing procedures, and measures to ensure data protection. Recognizing the low literacy rates among the population, the consent form was read and explained orally to each participant to ensure comprehensive understanding. Participants were given the opportunity to ask questions about the study and, if desired, discuss the consent form with a literate family member, friend, or trusted individual. Consent was obtained through a thumbprint or signature, ensuring that participants could provide informed consent regardless of their literacy level.\u003c/p\u003e \u003cp\u003e We conducted six focus group discussions with six to eight participants in different hospitals across Freetown in the rooms used by the NGO. The focus group discussions were held in Krio by a local researcher who was contracted for this research project. The group discussions were guided by a semi-structured interview guide. Questions focused on sociodemographic data of the participants and the CLWD they took care of, experiences of stigma, response to stigma, and social support needs (see supplementary material for an overview of the question guide).\u003c/p\u003e \u003cp\u003eDiscussions were audio-recorded and lasted between 50 and 60 minutes. The translation to English and the transcription process occurred simultaneously. To allow for transcript accuracy and avoid the loss of meaning in the translation process, the focus groups were transcribed and translated by the researcher who conducted the group discussions. Transcripts were later discussed with the rest of the research team, who are all familiar with the sociocultural context of Sierra Leone and speak Krio. In the case of a metaphoric expression that does not have an equivalent in English or cultural differences which need a context explanation, a note with an explanation of the meaning of the expression was made in the transcript. Any personal data of the participants was pseudonymized, the audio recordings were deleted after transcripts were finalized.\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eData were analysed using qualitative content analysis, supported by the software MAXQDA 2024 (VERBI GmbH). A first coding frame was built based on the main themes of the discussion guide. All group discussion transcripts were read and coded in a data-driven way to allow for the creation of new subcategories. In the following step of axial coding, these subcategories were reviewed, linked, aggregated and defined to ensure that they are mutually exclusive. During the following step of selective coding, the material was reviewed and recorded based on the final coding frame. The whole coding process was done by two researchers.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eStatement of positionality\u003c/h2\u003e \u003cp\u003eThis research was conducted by an all-female team with diverse cultural and professional backgrounds, combining insider and outsider perspectives on the Sierra Leonean context. The first author, a foreign academic with extensive work and research experience in Sierra Leone, designed and oversaw the study. Two team members are expatriate physiotherapists with long-term engagement in therapy services for children with disabilities, while a local researcher provided essential cultural and linguistic insights. The research team was conscious of how their own backgrounds \u0026ndash; particularly as individuals without disabilities \u0026ndash; may have influenced their perspectives on stigma and caregiving experiences. Additionally, we acknowledge that our gender may have shaped participant interactions, particularly in relation to societal norms around caregiving and discussing sensitive topics. By integrating the expertise of local practitioners and researchers with international academic perspectives, the study sought to balance critical analysis with cultural sensitivity, ensuring a respectful and informed approach to understanding the complexities of stigma and disability in Sierra Leone.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eIn this section we will first describe the sample demographics (Table\u0026nbsp;1), followed by the results for each of the three research questions with illustrative quotes. An overview of the coding scheme can be found in Table\u0026nbsp;2. Krio is a distinct language with its own grammar and structure, though it has roots in English. In translating participant quotes, we have aimed to preserve their original meaning and tone while making minor adjustments for clarity where necessary.\u003c/p\u003e\n\u003cdiv id=\"Sec13\"\u003e\n \u003ch2\u003eSample demographics\u003c/h2\u003e\n \u003cp\u003eA total of 37 caregivers of CLWDs participated in our study (see Table\u0026nbsp;1 for participant demographics). The sample consisted predominantly of women (84%). Among the participants, 29 (78%) were the biological parents of a child with a disability, 3 (8%) were grandparents, 3 (8%) were adoptive parents and in 2 cases (5%), other relatives participated. The CLWDs looked after by our study participants varied in age, with the majority between 2 to 10 years (30 children, 81%) as well as different types of disabilities, including hemiplegic cerebral palsy (38%), quadriplegic cerebral palsy (32%) and acquired brain injury (5%).\u003c/p\u003e\n \u003cp\u003eTable\u0026nbsp;1. Demographics of study participants\u003c/p\u003e\n \u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"572\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCharacteristics\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003en\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e%\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGender of participating caregiver\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eFemale (F)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e84\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eMale (M)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 496px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eGender of child living with disabilities\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eMale (M)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e25\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e68\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eFemale (F)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e32\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 340px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCaregiver relation to child\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eBiological parent\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e29\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e78\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eAdopted parent\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eGrandparents\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eOther relatives (aunt, uncle)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 496px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge of the child\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eunder 1 year\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003e1 year\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003e2 - 5 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e38\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003e6 - 10 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e43\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003e11 - 13 years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 496px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDisability of the child\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eHemiplegic cerebral palsy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e38\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eQuadraplegic cerebral palsy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e32\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eDiplegic cerebral palsy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eAcquired brain injury\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e5\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eEpilepsy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eSpastic cerebral palsy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eMuscular dystrophy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eUnilateral amputee\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eTB of the spine\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 57px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 283px;\"\u003e\n \u003cp\u003eMissing\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 155px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 76px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\u003cstrong\u003e\u003c/strong\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec14\"\u003e\n \u003ch2\u003eExperiences of stigma by association among caregivers of CLWDs (RQ1)\u003c/h2\u003e\n \u003cp\u003eOur analysis revealed five key social manifestations of stigma by association experienced by caregivers: \u003cem\u003eabusive language and derogatory remarks\u003c/em\u003e, \u003cem\u003elabeling, avoidance and exclusion\u003c/em\u003e, \u003cem\u003erejection by family\u003c/em\u003e, and \u003cem\u003eenforced conformity to traditional practices\u003c/em\u003e. These categories highlight the societal responses to caregivers and their children, as described by the participants in our study.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eAbusive language and derogatory remarks\u003c/em\u003e. Participants in our study described instances where they were subjected to derogatory remarks targeting both their children and themselves. Such remarks often arose during conflicts or everyday interactions and reflected negative societal attitudes toward CLWDs and their caregivers:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;Like for me, when you and your neighbor have little argument, they will find a word to tell you. Any small thing that will happen they will say, \u0026lsquo;just leave us alone, look at the demonic child you are having, look at the cripple, she is a devil child who does not walk.\u0026rsquo;\u0026rdquo; (Group 1, Participant 2)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eAccording to our sample, abusive language and public shaming remarks were uttered in both private and public encounters, contributing to a sense of social hostility and reinforcing stigmatization.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eLabeling.\u003c/em\u003e Participants described how labeling was used as a social mechanism to identify both them and their children, often reducing their identities to the child\u0026rsquo;s disability. Unlike overt abusive language or derogatory remarks, labeling was described as a more pervasive, subtle, and socially normalized behavior. It involved the use of the child\u0026rsquo;s disability as a defining characteristic for both the child and the caregiver, reinforcing their \u0026lsquo;otherness\u0026rsquo; within the community. This practice frequently emerged in daily conversations, where individuals would refer to the caregiver or child by the disability rather than their names or personal qualities:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;When people refer to us, they will say things like, \u0026lsquo;Kadija\u0026rsquo;s child, the one with the amputated hand.\u0026rsquo; People attach the child\u0026rsquo;s condition to their identity\u0026mdash;and to the caregiver too. For me, they say, \u0026lsquo;That woman with the child who cannot talk.\u0026rsquo; These are the challenges we face every day.\u0026quot; (Group 3, Participant 5)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cem\u003eAvoidance and exclusion.\u003c/em\u003e Some participants reported that they and their children were avoided by others in their communities. This avoidance was particularly pronounced among caregivers with children with congenital or early-onset conditions, like cerebral palsy, which are culturally linked to supernatural causes. Participants described how these behaviors reduced opportunities for social interaction and placed a strain on relationships within their communities:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;It is not easy for me. Some people won\u0026rsquo;t even let their children play with my other children because they believe I have given birth to devils or demons. But I know that it is the Almighty God who gave me these children.\u0026quot;(Group 4, Participant 1)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eParticipants also reported being excluded from social places, including being forced to leave their communities due to the stigma associated with their children\u0026rsquo;s conditions:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;Due to the condition of my child, I have been given a notice to quit from my place.\u0026rdquo; (Group 3, Participant 1)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cem\u003eRejection by family\u003c/em\u003e was a repeatedly mentioned form of stigma participants described. Reported family responses varied from indifference to rejection by close and extended family members. This lack of familial support was described as a source of additional challenges in managing caregiving responsibilities. For example:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;Like for my own, the dad had passed away in 2013 and my husband\u0026rsquo;s family does not want to know anything [about us]. When the child had a problem, I told all of them and no one wanted to know about us, they do not care. I told them about this operation but still they do not care and left me with nothing.\u0026rdquo; (Group 1, Participant 2)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cem\u003eEnforced conformity to traditional practices\u003c/em\u003e. Participants in our study described instances where societal and cultural beliefs about disability led to coercion into traditional rituals or practices. These expectations were often rooted in perceptions of disability as a curse or a sign of spiritual imbalance. Caregivers reported being pressured to comply with these beliefs, sometimes against their own judgment or will. One participant recounted their experience:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;My husband\u0026rsquo;s family said we should go to the bush. We went with her to traditional healers and they said for me to return her, like traditionally she is a devil, and they have a way to make her return to the bush by doing some traditional rites.\u0026rdquo; (Group 2, Participant 2)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eAccording to the participant, the pressure to perform these rites reflects the societal demand to align with traditional explanations and solutions for disability, which tends to place responsibility on the caregiver to address the perceived spiritual cause.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec15\"\u003e\n \u003ch2\u003eSummary of RQ 1\u003c/h2\u003e\n \u003cp\u003eCaregivers of CLWDs in our study described various manifestations of stigma by association, where societal attitudes and cultural beliefs about disability stigmatized not only the child but also the caregiver. These included abusive language, labeling, avoidance and exclusion, rejection by family, and enforced conformity to traditional practices, highlighting the dual burden of stigma faced by both child and caregiver. While the majority of participants reported experiencing stigma in various forms, only one participant reportedly had not encountered stigmatizing attitudes against themselves or the child.\u003c/p\u003e\n \u003cp\u003e\u003cimg src=\"https://myfiles.space/user_files/122228_c8a1650c59388082/122228_custom_files/img1739441459.png\"\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003eCaregivers responses to experiences of stigma by association (RQ2)\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec16\"\u003e\n \u003cp\u003eThis section presents the findings on caregivers\u0026apos; responses to stigma by association, categorized into withdrawing, coping, and resisting. Each category includes several subcategories that capture the specific strategies caregivers employed to navigate the stigma they and their child experience.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eWithdrawing.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eThe first category identified in caregivers\u0026apos; responses to stigma by association is withdrawing, which encompasses actions and emotions aimed at minimizing exposure to social judgment and ridicule. Subcategories of withdrawing include \u003cem\u003eshame\u003c/em\u003e, \u003cem\u003ehiding\u003c/em\u003e, and \u003cem\u003eemotional strain\u003c/em\u003e.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eShame\u003c/em\u003e emerged as an internalized emotional response to societal judgment, shaping how caregivers of CLWDs navigated their daily lives. Participants described shame as stemming from societal expectations and the perception of their child\u0026rsquo;s disability as a mark of personal or familial inadequacy. According to some participants, this internalized stigma led to a reluctance to be seen in public with their child or to engage in community activities. The fear of judgment \u0026ndash; whether expressed through looks, whispers, or outright comments \u0026ndash; profoundly influenced caregivers\u0026rsquo; actions and decisions. As one participant recounted:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026quot;Sometimes I feel very ashamed walking with her or even taking her to physiotherapy\u0026mdash;unless my relatives encourage me to go. For a young woman like me, facing these challenges is not easy. I cry at home.\u0026quot; (Group 2, Participant 8)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cem\u003eHiding\u003c/em\u003e reflected a behavioral response to the feelings of shame and fear of societal judgment. Some caregivers reported actively avoiding public spaces or situations where their child\u0026rsquo;s disability might be noticed, choosing instead to keep their child at home. This action was described as a protective mechanism to shield both the caregiver and the child from ridicule or negative attention. By limiting their public presence, caregivers sought to reduce potential exposure to stigma. One participant shared:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026quot;If I am in church and they ask me to walk with my child, he will suddenly shout and stretch, and then people start noticing his abnormality. They begin to see that he is not like other children. That is why I feel ashamed. Right now, I don\u0026rsquo;t take him out \u0026hellip; I keep him at home for his medicine and therapy.\u0026quot; (Group 2, Participant 4)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eThis account underscores how hiding served as a response to stigma, offering temporary relief from external judgment but at the cost of increased isolation and limited social interaction.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eEmotional strain\u003c/em\u003e. Caregivers also described experiencing emotional strain as a result of stigma by association. This strain, distinct from shame, encompassed the physical and mental toll of worry and helplessness about their child\u0026rsquo;s condition and the associated stigma. Participants noted that this distress impacted not only their mental health but also their physical well-being, sometimes interfering with their ability to care for their child. One participant explained:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;My wife cannot eat, she has lost her appetite due to the condition of our child, and she is seriously losing weight.\u0026rdquo; (Group 5, Participant 3)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cstrong\u003eCoping.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eThe second category identified in caregivers\u0026apos; responses to stigma by association is coping, which refers to strategies caregivers employed to navigate the challenges of stigma while maintaining their emotional well-being and caregiving responsibilities. Subcategories of coping include \u003cem\u003efocusing on positive interactions, spiritual reframing, maintaining hope in a cure\u003c/em\u003e, and \u003cem\u003eignoring\u003c/em\u003e.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eFocusing on positive interactions\u003c/em\u003e. Several caregivers described finding moments of joy in their daily lives with their children as a way to cope with stigma. These moments often involved engaging in playful or affectionate activities, which helped strengthen the bond between the caregiver and child and created a sense of positivity. One participant recounted how laughter became an important part of their interactions:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;Usually when I used to wash him and crack jokes with him, playing with his jaw, he will burst into laughter. Some will even ask, \u0026lsquo;Is that child the one laughing so loudly?\u0026rsquo; People used to ask whenever I play with him if it is really him who laughs so loudly.\u0026rdquo; (Group 4, Participant 7)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eIn several FGDs, caregivers reported about such interactions, providing them with a sense of fulfillment and reinforcing their commitment to caring for their child in the face of societal stigma.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eSpiritual reframing\u003c/em\u003e. Spiritual beliefs were described by caregivers as a central coping mechanism, allowing them to deal with the stigma associated with their child\u0026rsquo;s disability. Caregivers described upholding beliefs that their child\u0026rsquo;s condition as part of God\u0026rsquo;s plan, suggesting that the child\u0026rsquo;s existence had a divine purpose. This perspective provided caregivers with a counter-narrative to the stigmatizing views imposed by their communities and attach meaning to their experiences, as the following quotes illustrate:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;It is God that gave me her, it is the God that will help me to sustain her.\u0026rdquo; (Group 1, Participant 4)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eAdditionally, caregivers in our sample emphasized the belief that their child was a divine gift, fostering a sense of acceptance and love. This positive reframing was described as helping them to focus on their child\u0026rsquo;s inherent worth and reinforced their commitment to caregiving despite societal judgment. One participant described:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;We believe when God has given us this kind of person, we should take good care of them and give them the same love we give the others who are not disabled and assure them they are going to be the same.\u0026rdquo; (Group 2, Participant 5)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eDespite accepting their child\u0026rsquo;s conditions, the great majority of our participants expressed \u003cem\u003ehope for a cure\u003c/em\u003e, attributing this hope to various sources, including divine intervention, medical advancements, or a combination of forces. This hope enabled caregivers to sustain their efforts and focus on the future while managing current challenges.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;I have faith that my child will walk and that my child is not a demon. She will get up one day and start to walk.\u0026rdquo; (Group 1, Participant 5)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cem\u003eIgnoring\u003c/em\u003e negative comments or attitudes from others was described as another coping mechanism. By choosing not to engage with stigmatizing behavior, caregivers attempted to protect their emotional well-being and maintain a sense of control in social situations. One participant explained:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;Like when there is a birthday and you say, \u0026lsquo;What about my child?\u0026rsquo; They will say, \u0026lsquo;That one is not walking.\u0026rsquo; \u0026hellip; They look at her as if she is not a good child. So, you think when a person can not walk that means she is not good? These times, I just look at them and ignore.\u0026rdquo; (Group 1, Participant 1)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eIgnoring negative remarks was described to serve as a way to disengage from stigma while maintaining composure and not losing face.\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eResisting.\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eThe third category identified in caregivers\u0026apos; responses is resisting, which captures actions caregivers took to challenge stigma and advocate for their children. Subcategories of resisting include \u003cem\u003echallenging superstitious beliefs and practices, showing the child in public\u003c/em\u003e, and \u003cem\u003eexpressing public anger\u003c/em\u003e.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eChallenging superstitious beliefs and practices\u003c/em\u003e. Caregivers described efforts to counteract harmful beliefs about disability by rejecting superstitions and advocating for a more informed understanding of their child\u0026rsquo;s condition. One participant shared how they refused to conform to traditional healing practices:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;In my area, some people are saying it\u0026rsquo;s witches or maybe one family member who hates us has done this to us, or they have pushed him to witchcraft. [They say] that I should go to a traditional healer. I said no, this is what God gave me. I will not go to a traditional healer.\u0026rdquo; (Group 1, Participant 7)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eIn addition to rejecting superstitions, some caregivers educated others about the nature of their child\u0026rsquo;s condition. By explaining the medical basis for disability, they sought to challenge misconceptions and reduce stigma. One participant recounted:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;They [neighbors] normally said she is a devil child, do not go close to her, do not go near my child so the demon does not transfer. \u0026hellip; I do tell people it does not transfer because if it was that way, I should have gotten it a long time ago or her elder sister should have contracted it. \u0026hellip; Now I am seeing that they encourage her, she is going close to them, and they sit and talk with her.\u0026rdquo; (Group 1, Participant 5)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cem\u003eShowing the child in public\u003c/em\u003e. Various participants also described taking their child into public spaces as a way of challenging societal misconceptions and asserting their child\u0026rsquo;s rightful place in the community. By doing so, they hoped to inspire acceptance and demonstrate pride in their child. One participant explained:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;I believe that the more we have the courage to take our children out, the more the community will have courage and will help them and accept the situation as it is. After all, it is a decision from God, and if you have courage to not hide your child, it is in that situation that God will bring a solution for you.\u0026rdquo; (Group 6, Participant 6)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eThis act of visibility served as a form of advocacy, encouraging others to reconsider their attitudes toward CLWDs.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eExpressing public anger\u003c/em\u003e. Two participants also described instances where they confronted individuals in their communities who perpetuated stigma. By expressing anger publicly, they aimed to resist discrimination and create an environment where the child and caregiver could live without fear of ridicule. A mother of CLWD explained:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;I used to talk back to people, I sometimes got into serious confrontations between me and people in the community who spoke badly about my child. \u0026hellip; It got better, and no one from my community speaks badly about my child to me anymore.\u0026rdquo; (Group 5, Participant 2)\u003c/p\u003e\n \u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec17\"\u003e\n \u003ch2\u003eSummary for RQ 2\u003c/h2\u003e\n \u003cp\u003eIn response to the experiences of stigma by association, caregivers of CLWDs in our study employed three overarching types of responses: withdrawing, coping, and resisting. \u003cem\u003eWithdrawing\u003c/em\u003e primarily involved actions and emotions aimed at minimizing exposure to societal judgment. The coded extracts from the data often reflected an inward focus, where caregivers sought to protect themselves and their children by retreating from public spaces or interactions. \u003cem\u003eCoping\u003c/em\u003e, in contrast, was characterized by adaptive strategies aimed at maintaining emotional well-being and caregiving responsibilities. These responses tended to reflect resilience, demonstrating caregivers\u0026apos; efforts to find meaning and positivity despite the stigma they faced. \u003cem\u003eResisting\u003c/em\u003e represented a more proactive and outward-facing response, involving direct actions to challenge stigma, reshaping societal attitudes and asserting their child\u0026rsquo;s place within the community. Across these categories, \u003cem\u003ecoping\u003c/em\u003e and its subcategories were mentioned most frequently by participants, suggesting that many caregivers leaned on adaptive strategies as their primary mode of managing stigma. However, participants\u0026rsquo; responses also appeared to vary based on the specific situations they encountered. For instance, withdrawing might have been more common in moments of heightened societal judgment, while resisting was employed when caregivers felt compelled to defend or advocate for their child.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec18\"\u003e\n \u003ch2\u003eCaregivers\u0026rsquo; experience and wishes for social support (RQ3)\u003c/h2\u003e\n \u003cp\u003eThis section presents the findings on caregivers\u0026rsquo; experiences and wishes for social support, categorized into \u003cem\u003eempathy and awareness, practical support for daily needs, social inclusion\u003c/em\u003e, and \u003cem\u003eencouragement\u003c/em\u003e.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eEmpathy and awareness\u003c/em\u003e. Participants emphasized the need for empathy and a deeper understanding of their family\u0026rsquo;s situation from those around them. Caregivers noted that while they encountered moments of sympathy and recognition, many expressed a desire for greater awareness within their communities to reduce stigma and foster acceptance. One participant shared how helpful it was to her, knowing that those around her accepted her child\u0026rsquo;s disability as an illness:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;Like for me, they [community] know it\u0026rsquo;s a disease and everyone is feeling sorry for me because most of them know it is a disease. No one points a finger at me; they feel sorry for me. They say, \u0026lsquo;This child that was strong, was dancing, now she is not walking anymore,\u0026rsquo; and they all know it is a disease. \u0026hellip; It\u0026rsquo;s not easy, but it makes me feel better.\u0026rdquo; (Group 1, Participant 2)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cem\u003ePractical support for daily needs\u003c/em\u003e. Caregivers described the overwhelming demands of caregiving and their need for practical, hands-on support to ease their daily responsibilities as a form of socially desired support. Many felt that assistance with caregiving tasks, such as childcare or household chores, would also help with the emotional strain they experienced. As one caregiver explained:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;The other support that I would need is if someone could offer to take these children from me and help me to take care of them. That is a venture that I will strongly appreciate.\u0026rdquo; (Group 4, Participant 1)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eThe importance of \u003cem\u003esocial inclusion\u003c/em\u003e was often mentioned in our study, as participants described how invitations to community events provided a sense of belonging for both their children and themselves. Being included in these activities signified that their children were valued members of the community, which fostered acceptance and strengthened social ties.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;When there is something in the community for children, they will invite him. There is that concern for him in this new community. I thank God for that.\u0026rdquo; (Group 6, Participant 3)\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;For birthdays, in school and church, I want my child to be part of this\u0026rdquo; (Group 5, Participant 1)\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eSuch inclusion in social events allowed CLWDs to engage socially and develop relationships as well as reducing the caregivers sense of isolation.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eEncouragement\u003c/em\u003e from the community emerged as another form of support. Participants described how positive reinforcement and advice to remain committed to their caregiving responsibilities motivated them and reaffirmed their efforts. Moreover, some participants expressed that encouragement offered emotional validation and a sense of solidarity among parents as caregivers, as the following quote shows:\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003e\u0026ldquo;In my new community, the people there are very much accommodating to my child. People even used to advise that I should not relent in providing care for my child as I may not know what the future holds for me. \u0026hellip; It lifts me up when they say such words.\u0026rdquo; (Group 6, Participant 5)\u003c/p\u003e\n \u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec19\"\u003e\n \u003ch2\u003eSummary for RQ 3\u003c/h2\u003e\n \u003cp\u003eCaregivers of CLWDs in our study expressed diverse experiences and wishes for social support, encompassing empathy and awareness, practical support for daily needs, social inclusion, and encouragement. They highlighted the importance of community understanding as well as the need for hands-on assistance to ease caregiving burdens. Invitations to community events fostered social inclusion and a sense of belonging, while words of encouragement provided emotional strength and motivation. We found mixed views in our data \u0026ndash; most participants had experienced some form of support, but there was an overall wish for more comprehensive and holistic social support that addresses both practical and emotional needs, fostering a more inclusive and understanding community for caregivers and their children.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eRecap of study objectives and key findings\u003c/h2\u003e \u003cp\u003eThis study aimed to explore the experiences of stigma by association among caregivers of children living with disabilities (CLWDs) in Sierra Leone. Using focus group discussions with caregivers, we sought to investigate what forms of stigma by association caregivers of CLWDs experience, the strategies caregivers employ to navigate stigma by association, and the support systems they rely on or desire.\u003c/p\u003e \u003cp\u003e Most caregivers in our sample were caring for children with cerebral palsy, a condition acquired prenatally, during birth, or shortly after. Cerebral palsy\u0026rsquo;s unclear etiology within local frameworks of understanding leaves it particularly vulnerable to supernatural explanations, such as curses, moral failings, divine punishment or bad luck, that could extend to or affect others, and consequently stigmatization of both the child and the caregivers.\u003c/p\u003e \u003cp\u003eOur findings confirmed the multifaceted, pervasive nature of stigma by association, with caregivers experiencing various forms, such as abusive language, labeling, avoidance, and enforced conformity to traditional practices as also found by Yoder and colleagues (2016). Our study shows that stigma by association in Sierra Leone is socially normalized and embedded in everyday conversations [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e], which underscores the nature of stigma as a relational process. This reflects patterns observed in other contexts where disability is stigmatized [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR72\" class=\"CitationRef\"\u003e72\u003c/span\u003e, \u003cspan citationid=\"CR73\" class=\"CitationRef\"\u003e73\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDespite the widespread stigma, caregivers in our sample described a variety of responses in dealing with their stigma. Coping strategies were particularly prevalent, with many caregivers relying on spiritual reframing to reinterpret their child\u0026rsquo;s condition as part of God\u0026rsquo;s plan or a divine blessing. This aligns with previous research highlighting the role of religious beliefs in mitigating stigma in comparable cultural contexts [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Notably, many study participants also expressed a deep acceptance of their children, focusing on positive interactions and rejecting societal negativity. This acceptance is noteworthy, given the cultural narratives around disability in which these caregivers were socialized and presumably had internalized such beliefs themselves. It highlights their capacity to adapt and reconcile societal constructs with their lived experiences, even within highly stigmatizing environments [\u003cspan citationid=\"CR74\" class=\"CitationRef\"\u003e74\u003c/span\u003e]. However, it is important to consider that the caregivers in this study were those who actively sought support for their children and were willing to participate in focus group discussions. This may indicate a self-selecting group with greater openness to accepting their child's condition, a point further discussed in the study\u0026rsquo;s limitations.\u003c/p\u003e \u003cp\u003eResistance strategies, though less common than coping, were another noteworthy finding. Caregivers described educating others about their child\u0026rsquo;s condition, rejecting superstitions, and advocating for inclusion. These acts of resistance challenge societal norms and may reflect a shift toward empowerment and advocacy, despite the societal risks associated with confronting deeply ingrained cultural beliefs. The presence of such strategies in a context where conformity with the collective is valued highlights the caregivers\u0026rsquo; agency and the potential for social change [\u003cspan citationid=\"CR75\" class=\"CitationRef\"\u003e75\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eSocial support, or the lack thereof, emerged as a critical theme in caregivers\u0026rsquo; experiences within our study, a finding present also in other studies [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, \u003cspan citationid=\"CR70\" class=\"CitationRef\"\u003e70\u003c/span\u003e]. While some caregivers described moments of empathy and inclusion, such as invitations to community events, these instances appeared to be isolated and insufficient. Most caregivers expressed a desire for more holistic and consistent support, including practical assistance with caregiving responsibilities and greater awareness within their communities. This aligns with broader research emphasizing the importance of social inclusion and practical support in mitigating the impacts of stigma [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR76\" class=\"CitationRef\"\u003e76\u003c/span\u003e, \u003cspan citationid=\"CR77\" class=\"CitationRef\"\u003e77\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec22\" class=\"Section2\"\u003e \u003ch2\u003eTheoretical and practical implications\u003c/h2\u003e \u003cp\u003eThis study contributes to the theoretical understanding of stigma by association by emphasizing the compounded nature of stigma experienced by caregivers in contexts where cultural narratives link disability to moral failings or supernatural causes [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. While existing theories often focus on stigma as a relational dynamic between the stigmatized individual and their social environment [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e, \u003cspan citationid=\"CR78\" class=\"CitationRef\"\u003e78\u003c/span\u003e], our findings highlight the additional layer of blame and responsibility attributed to caregivers [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. This dual stigma \u0026ndash; comprising both association with the child and blame for their condition \u0026ndash; requires theoretical frameworks to incorporate cultural and spiritual beliefs as variables influencing stigma\u0026rsquo;s enactment and internalization. For instance, integrating constructs from the social-ecological model could provide a more nuanced understanding of how societal structures, cultural narratives, and individual coping mechanisms interact to shape the lived experiences of caregivers [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. By addressing these intersections, future theories can better account for the compounded effects of stigma in diverse cultural contexts, ultimately improving their relevance and applicability in global disability studies.\u003c/p\u003e \u003cp\u003eThe findings of this study suggest strategies to support caregivers of CLWDs that are culturally and contextually sensitive. Interventions could prioritize community-level engagement to encourage inclusive narratives around disability, fostering greater empathy and understanding [\u003cspan citationid=\"CR77\" class=\"CitationRef\"\u003e77\u003c/span\u003e, \u003cspan citationid=\"CR79\" class=\"CitationRef\"\u003e79\u003c/span\u003e]. For example, facilitating dialogues that draw on existing cultural frameworks to present disability as a natural or divine variation may help reduce stigma while respecting local beliefs [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. Practical strategies might include developing caregiver peer networks and counseling that provide emotional support and shared advocacy opportunities, recognizing the importance of solidarity in mitigating stigma. Additionally, community-led initiatives that increase caregivers\u0026rsquo; visibility and inclusion \u0026ndash; such as social events or collective projects \u0026ndash; could help normalize their participation and challenge exclusionary practices [\u003cspan citationid=\"CR79\" class=\"CitationRef\"\u003e79\u003c/span\u003e, \u003cspan citationid=\"CR80\" class=\"CitationRef\"\u003e80\u003c/span\u003e]. Collaborating with local organizations and stakeholders can ensure that such efforts are grounded in the specific needs and cultural contexts of the communities they serve.\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section3\"\u003e \u003ch2\u003eLimitations and future research\u003c/h2\u003e \u003cp\u003eThis study provides valuable insights into the experiences of stigma by association among caregivers of CLWDs in Sierra Leone. However, several limitations should be noted. First, while we strived to approach this research with cultural awareness and empathy, we recognize that, as researchers who have not personally experienced these intersecting stigmas, our interpretations are inevitably shaped by our positionality. Second, our overall relatively small sample predominantly consisted of female caregivers (84%), reflecting caregiving norms in Sierra Leone, but limiting exploration of gendered differences in stigma experiences. Future research could investigate how male caregivers experience and respond to stigma. Third, a potential selection bias may have influenced the findings, as most participants expressed positive attitudes toward their children. Caregivers struggling with internalized stigma or negative beliefs, such as viewing the child\u0026rsquo;s condition as a curse, may have been underrepresented. Fourth, this study was conducted in Freetown, the capital city, and does not capture the experiences of caregivers in rural or remote areas, where access to education and healthcare is more limited and traditional beliefs about disability may be even more deeply ingrained.\u003c/p\u003e \u003cp\u003e Fifth, for ethical reasons, we did not directly ask caregivers whether they felt personally responsible for their child\u0026rsquo;s condition, nor did we probe deeply into the spiritual or cultural beliefs they may have internalized in the context of a group setting. While some participants reported being blamed for their child\u0026rsquo;s disability, their own sense of culpability remains unexplored. Future studies could sensitively examine the dynamics of dual stigma, including internalized guilt. Additionally, the experiences of CLWDs themselves were not included, leaving a gap in understanding how children perceive stigma and their caregivers' responses. Finally, this study captured experiences at a single point in time, leaving questions about how stigma and coping strategies evolve over the long term. Research on protective factors, such as community characteristics or access to formal support systems, could also shed light on why some caregivers report less stigma. Evaluating community-based interventions to reduce stigma and support caregivers would be another valuable area for future research.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis focus group study focused on stigma by association experienced by caregivers of CLWDs in Sierra Leone. Caregivers detailed experiences of labeling, avoidance, and societal blame rooted in cultural and spiritual beliefs about disability, revealing the profound social challenges they face. Despite these obstacles, caregivers demonstrated resilience and agency, employing strategies to navigate stigma, including coping through spiritual reframing and, in some cases, resisting societal prejudices. The findings underscore the need for greater understanding and support for caregivers, including interventions that address practical needs and foster social inclusion. By amplifying the voices of caregivers, this study contributes to the broader discourse on stigma, disability, and caregiving, offering insights to inform inclusive policies and culturally sensitive interventions.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCLWD Children living with disabilities\u003c/p\u003e\n\u003cp\u003eETC Enable the Children\u003c/p\u003e\n\u003cp\u003eFGD Focus group discussion\u003c/p\u003e\n\u003cp\u003ePLWD People living with disabilities\u003c/p\u003e\n\u003cp\u003eRQ Research question\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cu\u003eEthics approval and consent to participate\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe research project was granted ethical clearance by the ethical board of the Sierra Leone Ethics and Scientific Review Committee (No. 14.08.2021). Prospective participants from all samples received an information sheet, detailing their role, rights, type of data collection, data protection, and a consent form. Informed consent was obtained from all research participants. Invitations to attend any of the study components were extended to participants solely upon receipt of their signed consent forms. All our procedures have been performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eClinical trial\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eClinical trial number: not applicable\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eConsent for publication\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eWritten consent for publication was obtained from all study participants.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAvailability of data and materials\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eCompeting interests\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe authors report no conflict of interest. The authors alone are responsible for the content and writing of the paper.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eFunding\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eThe research was funded by generic funds raised by World Hope International for the Enable the Children program. Sources of these generic funds included individuals, churches and foundations based in the United States.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAuthors\u0026rsquo; contributions\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eEA conceived of the study design, supported by HLL. EA and FB collected the data, with supervision from AV. HLL and SK analyzed the data, HLL drafted the article. CR contributed to the analytical approach for data analysis. All authors commented on the paper drafts and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cu\u003eAcknowledgments\u003c/u\u003e\u003c/p\u003e\n\u003cp\u003eWe thank all study participants for their participation. We thank H\u0026eacute;l\u0026egrave;ne N.C. Yoder for her critical reading of the draft manuscript and her valuable feedback.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eE Goffman. Stigma: On the management of spoiled identity: Goffman, E. (1963). Stigma: On the management of spoiled identity. Englewood Cliffs: Prentice-Hall 1963.\u003c/li\u003e\n \u003cli\u003eLink B, Hatzenbuehler ML. Stigma as an Unrecognized Determinant of Population Health: Research and Policy Implications. Journal of Health Politics, Policy and Law. 2016;41:653\u0026ndash;73. doi:10.1215/03616878-3620869.\u003c/li\u003e\n \u003cli\u003eRivera-Segarra E, Varas-D\u0026iacute;az N, Santos-Figueroa A. \u0026quot;That\u0026apos;s all Fake\u0026quot;: Health professionals stigma and physical healthcare of people living with Serious Mental Illness. PLoS One. 2019;14:e0226401. doi:10.1371/journal.pone.0226401.\u003c/li\u003e\n \u003cli\u003eScambler G. 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Disability \u0026amp; Society. 2022;37:827\u0026ndash;48. doi:10.1080/09687599.2020.1851172.\u003c/li\u003e\n \u003cli\u003eStone-MacDonald A, Digman Butera G. Cultural Beliefs and Attitudes about Disability in East Africa. Review of Disability Studies. 2014;8.\u003c/li\u003e\n \u003cli\u003eMay-Machunda PM. Living in the Nexus of Disability and Caregiving: An African American Parental Caregiver\u0026apos;s Critical Observations as a Folklorist. Journal of American Folklore. 2024;137:354\u0026ndash;66. doi:10.5406/15351882.137.545.08.\u003c/li\u003e\n \u003cli\u003eBecerra Carrillo N, Guasconi M, Barello S. The Impact of Caregiver Affiliate Stigma on the Psychosocial Well-Being of Caregivers of Individuals with Neurodegenerative Disorders: A Scoping Review. Healthcare (Basel) 2024. doi:10.3390/healthcare12191957.\u003c/li\u003e\n \u003cli\u003eGronholm PC, Henderson C, Deb T, Thornicroft G. Interventions to reduce discrimination and stigma: the state of the art. Soc Psychiatry Psychiatr Epidemiol. 2017;52:249\u0026ndash;58. doi:10.1007/s00127-017-1341-9.\u003c/li\u003e\n \u003cli\u003eHartog K, Hubbard CD, Krouwer AF, Thornicroft G, Kohrt BA, Jordans MJD. Stigma reduction interventions for children and adolescents in low- and middle-income countries: Systematic review of intervention strategies. Soc Sci Med. 2020;246:112749. doi:10.1016/j.socscimed.2019.112749.\u003c/li\u003e\n \u003cli\u003eBos AER, Pryor JB, Reeder GD, Stutterheim SE. Stigma: Advances in Theory and Research. Basic and Applied Social Psychology. 2013;35:1\u0026ndash;9. doi:10.1080/01973533.2012.746147.\u003c/li\u003e\n \u003cli\u003eHearst MO, Adelli R, Hepperlen R, Biggs J, DeGracia D, Ngulube E, et al. Community-based intervention to reduce stigma for children with disabilities in Lusaka, Zambia: a pilot. Disabil Rehabil. 2022;44:2295\u0026ndash;304. doi:10.1080/09638288.2020.1829105.\u003c/li\u003e\n \u003cli\u003eSmythe T, Adelson JD, Polack S. Systematic review of interventions for reducing stigma experienced by children with disabilities and their families in low- and middle-income countries: state of the evidence. Trop Med Int Health. 2020;25:508\u0026ndash;24. doi:10.1111/tmi.13388.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"scientific-reports","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"scirep","sideBox":"Learn more about [Scientific Reports](http://www.nature.com/srep/)","snPcode":"","submissionUrl":"","title":"Scientific Reports","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Scientific Reports","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Stigma by association, Disability, Caregivers, Sierra Leone, Social exclusion, Children living with disabilities","lastPublishedDoi":"10.21203/rs.3.rs-5999892/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5999892/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStigma by association refers to the process by which individuals connected to someone with a stigmatized condition, such as caregivers of children living with disabilities (CLWDs), are themselves marginalized or discredited. In Sierra Leone, cultural beliefs frame certain disabilities, especially congenital or early-onset conditions, as curses or moral failings, leading to blame and a dual burden of social exclusion. This study explores how caregivers experience and respond to this dual form of stigma by association and the social support they encounter or desire.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethod\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe conducted six focus group discussions with 37 caregivers of CLWDs in Freetown, Sierra Leone, recruited through hospitals and an NGO providing therapeutic services. Discussions were guided by a semi-structured interview protocol and analyzed using qualitative content analysis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eCaregivers reported experiencing stigma by association through labeling, avoidance, societal blame, and coercion into traditional practices. Stigma was deeply rooted in cultural narratives that attribute disability to supernatural causes, often extending blame to caregivers. Participants employed three overarching strategies to navigate stigma: withdrawing, coping (e.g., spiritual reframing, focusing on positive interactions), and resisting (e.g., challenging superstitious beliefs, advocating for inclusion). Despite some positive experiences of empathy and social inclusion, caregivers expressed a strong need for more practical support, community awareness, and holistic interventions to reduce stigma and foster understanding.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eDiscussion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study illuminates the complex interplay of cultural beliefs and social stigma shaping the experiences of caregivers of CLWDs. While caregivers demonstrated resilience and adaptive strategies, the dual stigma of association and societal blame underscores the urgent need for inclusive policies and community-based interventions. Amplifying the voices of caregivers and addressing their needs holistically are essential steps toward reducing stigma and creating supportive environments. This study contributes to the broader discourse on caregiving and stigma, offering insights for research and interventions in similar cultural contexts.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTrial registration\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eN/A\u003c/p\u003e","manuscriptTitle":"Experiencing and Responding to Dual Stigma: A Focus Group Study with Caregivers of Children Living with Disabilities in Freetown, Sierra Leone","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-02-13 10:17:05","doi":"10.21203/rs.3.rs-5999892/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-05-19T05:12:31+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-05-05T13:17:42+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"236420568924513464665915930983405857214","date":"2025-04-22T14:23:26+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-03-13T09:47:07+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"275784221488363284029191302118292561311","date":"2025-03-10T08:40:36+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-03-10T08:26:06+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-03-10T08:20:13+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-02-12T18:51:49+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-02-11T14:10:23+00:00","index":"","fulltext":""},{"type":"submitted","content":"Scientific Reports","date":"2025-02-10T13:59:33+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"scientific-reports","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"scirep","sideBox":"Learn more about [Scientific Reports](http://www.nature.com/srep/)","snPcode":"","submissionUrl":"","title":"Scientific Reports","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Scientific Reports","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"3baab6b4-6b08-45a5-8f22-a06437207070","owner":[],"postedDate":"February 13th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[{"id":44248349,"name":"Biological sciences/Psychology/Human behaviour"},{"id":44248350,"name":"Health sciences/Health care/Public health"},{"id":44248351,"name":"Health sciences/Health care/Patient education"}],"tags":[],"updatedAt":"2025-06-23T15:58:17+00:00","versionOfRecord":{"articleIdentity":"rs-5999892","link":"https://doi.org/10.1038/s41598-025-07034-1","journal":{"identity":"scientific-reports","isVorOnly":false,"title":"Scientific Reports"},"publishedOn":"2025-06-20 15:56:54","publishedOnDateReadable":"June 20th, 2025"},"versionCreatedAt":"2025-02-13 10:17:05","video":"","vorDoi":"10.1038/s41598-025-07034-1","vorDoiUrl":"https://doi.org/10.1038/s41598-025-07034-1","workflowStages":[]},"version":"v1","identity":"rs-5999892","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5999892","identity":"rs-5999892","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}