A Multidimensional Analysis of Caregiving and Disability Management in St. Kitts and Nevis: Challenges, Resilience, and Policy Implications

A Multidimensional Analysis of Caregiving and Disability Management in St. Kitts and Nevis: Challenges, Resilience, and Policy Implications | 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 Research Article A Multidimensional Analysis of Caregiving and Disability Management in St. Kitts and Nevis: Challenges, Resilience, and Policy Implications Robert Chirima This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7267050/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract This study investigates caregiving and disability management in St. Kitts and Nevis through a multidimensional lens that integrates clinical, cultural, and contextual factors relevant to the care of individuals with developmental and physical disabilities. Employing a qualitative synthesis approach, the research draws on regional policy reviews and semi-structured interviews with caregivers, healthcare professionals, and community stakeholders. Thematic analysis uncovers key determinants shaping caregiving practices, including caregiver resilience, type and severity of disability, health infrastructure, and prevailing social norms. Findings reveal critical gaps in formal disability services, overreliance on informal care networks, and limited access to culturally adapted interventions—challenges compounded by geographic isolation and socio-economic constraints. In response, the study proposes a conceptual framework grounded in rehabilitation, social work, and community health theory to support integrated and inclusive caregiving models. This framework offers a practical tool for clinicians, service providers, and policymakers seeking to develop context-sensitive and sustainable care strategies. By centering the Caribbean caregiving experience, this research contributes original insight to the interdisciplinary literature by providing the first conceptual framework tailored to caregiving in St. Kitts and Nevis, grounded in both global disability theory and Caribbean-specific realities. It also offers actionable insights for health policymakers and practitioners seeking to bridge formal service gaps with community-based solutions. Caregiving Disability Small Island Developing States Caribbean Qualitative Research Conceptual Framework Informal Care Stigma Policy Reform Figures Figure 1 Introduction Please have a look at courier new font provided for text in article. Caregiving for persons with developmental and physical disabilities represents a critical, yet often overlooked, dimension of health and social care systems—particularly in low-resource and geographically isolated settings such as small island developing states (SIDS). While global research has increasingly emphasized the biopsychosocial demands of caregiving (Schulz & Sherwood, 2008 ; Ghosh et al., 2020 ), there remains a substantial research gap in understanding how caregiving practices are shaped by localized socio-cultural, economic, and historical conditions in the Caribbean. St. Kitts and Nevis, like many Caribbean nations, faces compounded challenges in disability management stemming from limited formal health infrastructure, socio-economic precarity, entrenched stigma, and residual colonial legacies in healthcare delivery (Cohen & Wilson, 2017 ; Alleyne et al., 2021 ). However, few empirical studies have systematically investigated the everyday realities and structural conditions of caregiving in this context. This study addresses this gap by offering a multidimensional, qualitative case study of caregiving and disability management in St. Kitts and Nevis. It employs a qualitative synthesis methodology that integrates document analysis of regional policies and scholarly literature with primary data from in-depth interviews conducted with caregivers, healthcare professionals, and local stakeholders. The rationale for this method lies in its ability to capture complex, context-specific dynamics, while also enabling the development of a conceptual framework that reflects the lived experiences of those engaged in caregiving within this unique Caribbean setting (Creswell & Poth, 2018 ). Preliminary findings reveal that caregiving in St. Kitts and Nevis is characterized by an overreliance on informal networks, limited access to specialized services, and insufficient caregiver training—issues compounded by cultural beliefs, social stigma, and geographic barriers. These findings resonate with regional studies that have highlighted similar barriers in access and equity (Bain et al., 2019 ; WHO/PAHO, 2022), yet this paper contributes a novel, country-specific framework that articulates the interdependent factors influencing caregiving outcomes. By centering the voices of caregivers and service providers in a small island developing state, this research contributes original insight to the interdisciplinary fields of rehabilitation, social work, disability studies, and public health. Importantly, the study advances the discourse on inclusive and sustainable disability care by conceptualizing a contextually grounded framework for improved caregiving in underrepresented regions. Research Objectives To examine the socio-cultural, structural, and environmental factors influencing caregiving practices for persons with developmental and physical disabilities in St. Kitts and Nevis. To identify the systemic gaps and strengths in formal and informal disability support systems, including caregiver training, public health infrastructure, and access to rehabilitation services. To develop a context-specific, multidimensional conceptual framework that informs culturally responsive policy and intervention strategies for disability management in small island developing states. Conceptual Framework This study proposes a Multidimensional Conceptual Framework for Disability Caregiving, designed to capture the complex interplay of individual, relational, structural, and cultural factors shaping caregiving practices in St. Kitts and Nevis. The framework draws on Bronfenbrenner’s Ecological Systems Theory (1979), Engel’s Biopsychosocial Model (1977), and the Social Model of Disability (Oliver, 1990 ), integrating them with regional scholarship on caregiving, postcolonial health systems, and disability inclusion (Cohen & Wilson, 2017 ; Bain et al., 2019 ). Core Dimensions of the Framework Individual Level : The interplay between care recipient factors (disability type/severity, developmental needs, communication ability) and caregiver attributes (knowledge, health, resilience, coping mechanisms) significantly impacts care dynamics (Ghosh et al., 2020 ). Interpersonal/Family Level Schulz & Sherwood ( 2008 ) highlight the significance of family structure and intergenerational dynamics, while WHO/PAHO (2022) emphasize the crucial role of informal care networks in the absence of formal support systems. Community/Cultural Level Community attitudes, religious beliefs, cultural norms, and traditional practices significantly influence perceptions and experiences related to disability, dependency, and care. Institutional/Structural Level Institutional and structural factors significantly impact public health outcomes, particularly regarding access to essential services and resources. Addressing policy implementation gaps, enhancing caregiver training, and reevaluating resource allocation are crucial steps. Furthermore, the enduring influence of colonial legacies on public health infrastructures warrants careful consideration. Policy/Systemic Level National disability policies, regional agreements, and international frameworks like the UNCRPD are crucial; however, geographic and economic limitations of SIDS pose significant service delivery challenges. Framework Contribution This framework moves beyond traditional biomedical or psychosocial models by situating caregiving within a Caribbean-specific ecological and postcolonial context. It offers a diagnostic and planning tool for researchers, clinicians, and policymakers seeking to design inclusive interventions that respond to the real-world complexities of caregiving in St. Kitts and Nevis and similar low-resource settings. Methodology This study employed a qualitative case study design to explore the complex, context-specific dynamics of caregiving and disability management in St. Kitts and Nevis. The qualitative approach was chosen to allow for an in-depth exploration of lived experiences, social meanings, and structural conditions that shape caregiving practices—particularly those that are not readily captured through quantitative measures (Creswell & Poth, 2018 ). The approach was selected for its capacity to generate rich, context-specific insights into complex social phenomena (Yin, 2018 ). Research Design and Rationale The case study method was appropriate for examining caregiving in a bounded system—St. Kitts and Nevis—where the socio-cultural, historical, and policy context is critical to understanding disability management (Yin, 2018 ). The approach is also aligned with calls for context-sensitive disability research in underrepresented Global South settings (Grech, 2015 ). Sampling Strategy The study used purposive sampling to identify key participants involved in disability caregiving. These included: family caregivers of persons with developmental or physical disabilities, healthcare professionals such as nurses, community health aides, and rehabilitation workers, and local stakeholders involved in in social services, disability advocacy, and education. Participants were selected based on their experience and geographic diversity across the islands. A total of 20 participants were selected based on criteria such as caregiving experience, professional involvement in disability services, and geographic representation across rural and urban areas on both islands. Ethical approval was obtained through relevant local institutional review boards, and all participants gave informed consent. Data Collection Data were collected over a three-month period through semi-structured interviews (lasting 45–60 minutes) conducted face-to-face or via secure video conferencing platforms and document analysis of local disability policies, national disability policies, Caribbean regional health frameworks, and relevant NGO reports frameworks. Interviews were audio-recorded, transcribed, and conducted in secure settings. Interview guides were informed by the conceptual framework and piloted with local stakeholders to ensure cultural relevance. Data Analysis Interview transcripts and documents were analyzed using thematic analysis (Braun & Clarke, 2006 ), facilitated by qualitative data management software (e.g., NVivo). The analysis followed a six-phase process: familiarization, coding, theme generation, theme review, theme definition, and report writing. Themes were iteratively refined to capture patterns across individual, family, cultural, and systemic levels. Triangulation of data sources (interviews and documents) and participant validation (member checks) enhanced the credibility and trustworthiness of findings. Reflexivity was maintained throughout the research process to account for researcher positionality and cultural bias (Lincoln & Guba, 1985 ). Methodological Contribution This study contributes methodologically by integrating an underutilized Caribbean context into the global discourse on disability caregiving. It also demonstrates the utility of qualitative, inductive approaches in developing frameworks that are grounded in local realities and adaptable for clinical and policy application. Research Findings The thematic analysis of interviews and policy documents revealed four overarching themes that define the caregiving and disability management landscape in St. Kitts and Nevis. These findings highlight the complex, layered nature of caregiving experiences and the systemic challenges within the local context. 1. Informal Caregiving as the Primary Support Structure Participants consistently reported that family-based and informal caregiving networks form the backbone of disability care. With limited access to institutional or residential facilities, caregiving is often undertaken by mothers, grandmothers, or older siblings, many of whom lack formal training. “I never got any training. I just had to learn as I went along. The hospital gave me a list of things, but everything else was trial and error.” – Female caregiver, rural St. Kitts This finding reflects the broader Caribbean caregiving trend documented by Bain et al. ( 2019 ), where structural underinvestment in disability care reinforces dependence on family labor. 2. Cultural Stigma and Misunderstanding of Disability Caregivers and professionals highlighted persistent cultural stigma surrounding disability, especially developmental disorders. Some respondents noted beliefs linking disability to spiritual causes or punishment, leading to social exclusion and emotional strain. “Some people still think it’s obeah. They say I must have done something wrong. That kind of talk makes it harder to come out and ask for help.” – Parent of child with autism This echoes earlier work by Cohen and Wilson ( 2017 ), who emphasized the role of postcolonial belief systems in shaping Caribbean attitudes toward disability. 3. Gaps in Public Infrastructure and Policy Implementation Though disability policies exist in principle, participants noted that implementation is weak , with fragmented services and inconsistent support. Services like speech therapy, occupational therapy, or respite care are rare, particularly outside urban centers. “We have laws, but where are the services? You wait months for appointments. Most of the time, we just do without.” – Health worker, Nevis The findings align with WHO/PAHO (2022) reports identifying health system constraints in Caribbean SIDS, such as limited human resources, funding, and coordination. 4. Caregiver Resilience and Adaptive Coping Mechanisms Despite the challenges, caregivers demonstrated strong resilience and adaptive strategies , including peer support groups, informal resource sharing, and spiritual coping. “My church is my therapy. They pray with me, and some of the ladies have children like mine. We learn from each other.” – Caregiver, Basseterre This aligns with Schulz and Sherwood ( 2008 ), who suggest that informal networks and religious coping can be protective factors in high-stress caregiving contexts. These four themes including informal caregiving dominance, cultural stigma, infrastructural gaps, and adaptive resilience interact across ecological levels. Together, they validate the multidimensional conceptual framework proposed in this study. The findings emphasize the urgent need for culturally informed, locally grounded caregiving interventions that go beyond policy rhetoric to empower caregivers and improve service delivery for persons with disabilities in St. Kitts and Nevis. Multidimensional Conceptual Framework Discussion of Findings The results of this study illuminate the deeply intertwined socio-cultural, structural, and emotional dimensions of caregiving for persons with developmental and physical disabilities in St. Kitts and Nevis. Through the lens of the multidimensional conceptual framework, the discussion below synthesizes how these findings both confirm and extend existing theoretical models, while offering new insights relevant to small island developing states (SIDS). 1. Informal Caregiving and the Burden of Responsibility The study underscores the critical role of informal caregivers—primarily family members—in the absence of robust institutional support. Participants described caregiving as a labor-intensive and emotionally demanding role often undertaken without financial compensation or adequate training. This finding is consistent with Schulz and Sherwood ( 2008 ), who emphasize the physical and psychological toll of informal caregiving in the absence of professional supports. However, in the St. Kitts and Nevis context, the dependency on informal care is not merely a function of family values, but a necessity shaped by under-resourced health systems. Caregivers reported learning “on the job” without standardized training—paralleling observations by Bain et al. ( 2019 ) that Caribbean caregivers often operate in knowledge vacuums due to systemic neglect of disability-specific training and resources. This reliance on informal networks also aligns with Bronfenbrenner’s ( 1979 ) ecological systems theory, as caregiving behaviors and burdens are not formed in isolation but are embedded within broader community and institutional environments shaped by interactions across multiple systemic levels—from individual caregiver traits to national policy implementation. For instance, caregiver resilience and reliance on spiritual coping (individual and community levels) exist in tension with systemic barriers such as the lack of access to disability-specific services (institutional level). 2. Cultural Stigma and Spiritual Interpretations of Disability A recurrent theme across interviews was the persistence of cultural stigma associated with disability, including beliefs that frame disability as a punishment, curse, or the result of supernatural intervention. These attitudes not only hinder social inclusion but also discourage caregivers from seeking support due to fear of judgment or shame. These results support Cohen and Wilson’s ( 2017 ) argument that postcolonial legacies and spiritual interpretations of illness continue to shape Caribbean health perceptions. The internalization of stigma among caregivers often resulted in isolation and reluctance to participate in public advocacy or rehabilitation programming. This reinforces the social model of disability (Oliver, 1990 ), which posits that disability is not merely a medical condition but a result of societal exclusion and discrimination. Oliver’s Social Model of Disability (1990), attributes the disabling experience not only to impairments but to the inaccessibility of environments and social attitudes. Cultural beliefs and stigma in St. Kitts and Nevis marginalize persons with disabilities, further burdening caregivers emotionally and socially (Cohen & Wilson, 2017 ). The pervasiveness of stigma also underscores the need for culturally adapted public education campaigns to reframe disability as a human rights and inclusion issue rather than a moral or spiritual failing. 3. Structural Gaps and Inequitable Access to Services The findings further highlight significant structural limitations within the public healthcare and disability support systems. Participants reported long wait times, minimal access to specialized services (e.g., occupational therapy), and geographic disparities in resource availability—especially in rural or economically disadvantaged communities. These gaps reflect the broader challenges identified by WHO/PAHO (2022) regarding health system fragility in the Caribbean, where small population sizes and constrained budgets limit investment in specialized care. In the context of Engel’s ( 1977 ) biopsychosocial model , this lack of institutional support hinders the holistic wellbeing of both caregivers and care recipients. Engel’s Biopsychosocial Model (1977) is evident in the way caregivers described the physical, emotional, and social demands of caregiving. The absence of professional support services often leads caregivers to develop personal coping mechanisms, echoing Ghosh et al. ( 2020 ) on the global invisibility of long-term care in under-resourced settings. The disconnect between policy rhetoric and implementation—where disability rights frameworks exist on paper but are not translated into practice—also reflects the findings of Grech ( 2015 ), who critiques the performativity of disability policies in the Global South. Caregivers in this study routinely expressed frustration with tokenistic or inaccessible programs , reinforcing the need for community-driven, contextually grounded service delivery models . 4. Caregiver Resilience and Adaptive Strategies Despite the burdens and systemic gaps, caregivers demonstrated remarkable resilience, using adaptive coping strategies to meet daily challenges. These included drawing on religious faith, informal knowledge-sharing with other caregivers, and seeking emotional refuge in community networks. This finding resonates with the work of Ghosh et al. ( 2020 ), who emphasize the importance of caregiver agency and informal resilience mechanisms , especially in contexts where state support is absent or unreliable. It also supports Bronfenbrenner’s ( 1979 ) assertion that microsystem-level interactions (e.g., family, peer support, religious involvement) can provide critical buffers against the stress induced by macrosystem-level constraints. These resilience strategies, while admirable, should not be used to justify systemic neglect. Rather, they highlight the need for co-produced solutions that build on community strengths while addressing institutional deficits. By integrating the biopsychosocial, social, and ecological theoretical models, this research underscores the importance of multidimensional approaches to disability management in low-resource and culturally diverse settings. Moreover, the dominance of informal caregiving and underfunded public health services reinforce the argument that caregiving in postcolonial, small-island contexts is a structural issue, not simply a private burden (Grech, 2015 ; WHO/PAHO, 2022). Despite these challenges, the study highlights caregiver agency and resilience, aligning with Schulz and Sherwood ( 2008 ), who argue that emotional, religious, and social resources are key buffers against caregiver burnout. Key Contributions This research contributes original empirical data from a neglected geographic context, emphasizing the role of historical, cultural, and economic factors in shaping caregiving. It challenges the assumption that global disability care frameworks can be universally applied, calling for localized, participatory solutions that acknowledge the realities of caregivers in SIDS. This study also makes a contribution to the disability and caregiving literature by provides the first conceptual framework tailored to caregiving in St. Kitts and Nevis, grounded in both global disability theory and Caribbean-specific realities. The research offers actionable insights for health policymakers and practitioners seeking to bridge formal service gaps with community-based solutions. The findings centering the experiences of caregivers in a previously under-researched SIDS context, demonstrating how macro-structural constraints and cultural scripts intersect with everyday caregiving, and providing a visual and theoretically grounded framework that can guide culturally responsive interventions and policy reforms. The findings contributes to the Journal of Developmental and Physical Disabilities by presenting a clinically relevant, culturally situated, and evidence-informed model for disability support. Conclusion and Policy/Practice Implications This study sheds light on the structural, cultural, and interpersonal dimensions of caregiving for persons with disabilities in St. Kitts and Nevis. It offers a novel conceptual framework grounded in lived experience and theory, suitable for guiding clinical, policy, and community-based interventions. Policy and Practice Recommendations : Expand formal care services through decentralization and mobile outreach, Implement caregiver training and integrate it into public health systems, Launch public awareness campaigns to address stigma, Introduce financial and emotional support systems for caregivers and Foster participatory policy design with caregiver and disability community input. This research provides a foundation for future studies and offers practical tools for stakeholders to build equitable, resilient, and culturally grounded caregiving systems in the Caribbean and beyond. Declarations Ethical Approval (Not applicable) Funding – No funding received Availability of Data and Materials The qualitative data supporting the findings of this study are available from the corresponding author upon reasonable request. Due to the sensitive nature of interviews involving caregivers and persons with disabilities, data have been anonymized to protect participant confidentiality in accordance with ethical approval standards. Authors Contributions - RC wrote the manuscript All authors read and approved the manuscript. Conflict of Interest Statement – No conflict of interest References Alleyne, G., Lewis-Fuller, E., & Fraser, H. (2021). The Caribbean health context: From colonial to community-oriented systems . Caribbean Public Health. Bain, B., Ferguson, T. S., & Samms-Vaughan, M. (2019). Challenges and opportunities in care for children with disabilities in Jamaica. Disability and Health Journal , 12 (1), 62–70. https://doi.org/10.1016/j.dhjo.2018.07.001 Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology , 3 (2), 77–101. https://doi.org/10.1191/1478088706qp063oa Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature and design . Harvard University Press. Cohen, L., & Wilson, R. (2017). Disability in the Caribbean: A rights-based approach to health. International Journal of Disability Development and Education , 64 (5), 518–532. https://doi.org/10.1080/1034912X.2017.1313387 Creswell, J. W., & Poth, C. N. (2018). Qualitative inquiry and research design: Choosing among five approaches (4th ed.). Sage. Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science , 196 (4286), 129–136. https://doi.org/10.1126/science.847460 Ghosh, S., Greenberg, J. S., & Seltzer, M. M. (2020). Long-term care for adults with developmental disabilities: A global perspective. International Review of Research in Developmental Disabilities , 58 , 1–34. https://doi.org/10.1016/bs.irrdd.2019.10.001 Grech, S. (2015). Decolonising eurocentric disability studies: Why colonialism matters in the disability and global South debate. Social Identities , 21 (1), 6–21. https://doi.org/10.1080/13504630.2014.995347 Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry . Sage. Oliver, M. (1990). The politics of disablement . Palgrave Macmillan. Schulz, R., & Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing , 108 (9 Suppl), 23–27. https://doi.org/10.1097/01.NAJ.0000336406.45248.4c World Health Organization/Pan American Health Organization. (2022). Health systems strengthening in the Caribbean: Equity and access for persons with disabilities . WHO/PAHO. Yin, R. K. (2018). Case study research and applications: Design and methods (6th ed.). Sage. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted 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-7267050","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":506409112,"identity":"c3a25e41-e4c5-453f-bba1-b22668905b94","order_by":0,"name":"Robert Chirima","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA4UlEQVRIiWNgGAWjYFACHjCZwMbA2MDAUMHAYECclgSYljOkaAGzGduI0GLe3nvwceUPuzw+6cOtG37OOyxvzt58gOFHxTacWmTOnEs2PJOQXMzGl9h2s3fbYcOdPccSGHvO3MapRUIix0yyIeFAYhsPY9sN3m2HGTfcyDFgZmzDq8X8J0zLzb9zDtsTo8WMEablNm/D4UTCWnjOJUs2pCVDtMgcS0/ecOZYwkG8fmHvPfixwcYucX4P+7Obb2qsbTccbz744EcFbi3ooBlMHiBaPRDUkaJ4FIyCUTAKRggAAEAWXAKXmWIWAAAAAElFTkSuQmCC","orcid":"","institution":"Zimbabwe Ezekiel Guti University","correspondingAuthor":true,"prefix":"","firstName":"Robert","middleName":"","lastName":"Chirima","suffix":""}],"badges":[],"createdAt":"2025-08-01 03:53:15","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7267050/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7267050/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":90101782,"identity":"6e01a8b5-ad0a-49c6-bd80-d6cb7762277a","added_by":"auto","created_at":"2025-08-28 13:24:15","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":26394,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eMultidimensional Conceptual Framework for Caregiving and Disability Management in St. Kitts and Nevis\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-7267050/v1/582605d76d169fe9588668e5.png"},{"id":90101996,"identity":"bf7b610f-c650-46f6-8d0a-5d68f6365322","added_by":"auto","created_at":"2025-08-28 13:24:30","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1016502,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7267050/v1/0bb79afd-1d50-4a5f-bc6a-ff24dbaf93e4.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"A Multidimensional Analysis of Caregiving and Disability Management in St. Kitts and Nevis: Challenges, Resilience, and Policy Implications","fulltext":[{"header":"Introduction","content":"\u003cp\u003e \u003cspan fontcategory=\"NonProportional\" class=\"\" name=\"Emphasis\"\u003ePlease have a look at courier new font provided for text in article.\u003c/span\u003e\u003c/p\u003e\u003cp\u003eCaregiving for persons with developmental and physical disabilities represents a critical, yet often overlooked, dimension of health and social care systems\u0026mdash;particularly in low-resource and geographically isolated settings such as small island developing states (SIDS). While global research has increasingly emphasized the biopsychosocial demands of caregiving (Schulz \u0026amp; Sherwood, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2008\u003c/span\u003e; Ghosh et al., \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2020\u003c/span\u003e), there remains a substantial research gap in understanding how caregiving practices are shaped by localized socio-cultural, economic, and historical conditions in the Caribbean. St. Kitts and Nevis, like many Caribbean nations, faces compounded challenges in disability management stemming from limited formal health infrastructure, socio-economic precarity, entrenched stigma, and residual colonial legacies in healthcare delivery (Cohen \u0026amp; Wilson, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; Alleyne et al., \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). However, few empirical studies have systematically investigated the everyday realities and structural conditions of caregiving in this context.\u003c/p\u003e\u003cp\u003eThis study addresses this gap by offering a multidimensional, qualitative case study of caregiving and disability management in St. Kitts and Nevis. It employs a qualitative synthesis methodology that integrates document analysis of regional policies and scholarly literature with primary data from in-depth interviews conducted with caregivers, healthcare professionals, and local stakeholders. The rationale for this method lies in its ability to capture complex, context-specific dynamics, while also enabling the development of a conceptual framework that reflects the lived experiences of those engaged in caregiving within this unique Caribbean setting (Creswell \u0026amp; Poth, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2018\u003c/span\u003e).\u003c/p\u003e\u003cp\u003ePreliminary findings reveal that caregiving in St. Kitts and Nevis is characterized by an overreliance on informal networks, limited access to specialized services, and insufficient caregiver training\u0026mdash;issues compounded by cultural beliefs, social stigma, and geographic barriers. These findings resonate with regional studies that have highlighted similar barriers in access and equity (Bain et al., \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2019\u003c/span\u003e; WHO/PAHO, 2022), yet this paper contributes a novel, country-specific framework that articulates the interdependent factors influencing caregiving outcomes.\u003c/p\u003e\u003cp\u003eBy centering the voices of caregivers and service providers in a small island developing state, this research contributes original insight to the interdisciplinary fields of rehabilitation, social work, disability studies, and public health. Importantly, the study advances the discourse on inclusive and sustainable disability care by conceptualizing a contextually grounded framework for improved caregiving in underrepresented regions.\u003c/p\u003e\u003cp\u003e\u003cb\u003eResearch Objectives\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eTo examine the socio-cultural, structural, and environmental factors influencing caregiving practices for persons with developmental and physical disabilities in St. Kitts and Nevis.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eTo identify the systemic gaps and strengths in formal and informal disability support systems, including caregiver training, public health infrastructure, and access to rehabilitation services.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eTo develop a context-specific, multidimensional conceptual framework that informs culturally responsive policy and intervention strategies for disability management in small island developing states.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eConceptual Framework\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis study proposes a Multidimensional Conceptual Framework for Disability Caregiving, designed to capture the complex interplay of individual, relational, structural, and cultural factors shaping caregiving practices in St. Kitts and Nevis. The framework draws on Bronfenbrenner\u0026rsquo;s Ecological Systems Theory (1979), Engel\u0026rsquo;s Biopsychosocial Model (1977), and the Social Model of Disability (Oliver, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e1990\u003c/span\u003e), integrating them with regional scholarship on caregiving, postcolonial health systems, and disability inclusion (Cohen \u0026amp; Wilson, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2017\u003c/span\u003e; Bain et al., \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2019\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cb\u003eCore Dimensions of the Framework\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eIndividual Level\u003c/b\u003e:\u003c/p\u003e\u003cp\u003eThe interplay between care recipient factors (disability type/severity, developmental needs, communication ability) and caregiver attributes (knowledge, health, resilience, coping mechanisms) significantly impacts care dynamics (Ghosh et al., \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2020\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cb\u003eInterpersonal/Family Level\u003c/b\u003e\u003c/p\u003e\u003cp\u003eSchulz \u0026amp; Sherwood (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2008\u003c/span\u003e) highlight the significance of family structure and intergenerational dynamics, while WHO/PAHO (2022) emphasize the crucial role of informal care networks in the absence of formal support systems.\u003c/p\u003e\u003cp\u003e\u003cb\u003eCommunity/Cultural Level\u003c/b\u003e\u003c/p\u003e\u003cp\u003eCommunity attitudes, religious beliefs, cultural norms, and traditional practices significantly influence perceptions and experiences related to disability, dependency, and care.\u003c/p\u003e\u003cp\u003e\u003cb\u003eInstitutional/Structural Level\u003c/b\u003e\u003c/p\u003e\u003cp\u003eInstitutional and structural factors significantly impact public health outcomes, particularly regarding access to essential services and resources. Addressing policy implementation gaps, enhancing caregiver training, and reevaluating resource allocation are crucial steps. Furthermore, the enduring influence of colonial legacies on public health infrastructures warrants careful consideration.\u003c/p\u003e\u003cp\u003e\u003cb\u003ePolicy/Systemic Level\u003c/b\u003e\u003c/p\u003e\u003cp\u003eNational disability policies, regional agreements, and international frameworks like the UNCRPD are crucial; however, geographic and economic limitations of SIDS pose significant service delivery challenges.\u003c/p\u003e\u003cp\u003e\u003cb\u003eFramework Contribution\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis framework moves beyond traditional biomedical or psychosocial models by situating caregiving within a Caribbean-specific ecological and postcolonial context. It offers a diagnostic and planning tool for researchers, clinicians, and policymakers seeking to design inclusive interventions that respond to the real-world complexities of caregiving in St. Kitts and Nevis and similar low-resource settings.\u003c/p\u003e"},{"header":"Methodology","content":"\u003cp\u003eThis study employed a qualitative case study design to explore the complex, context-specific dynamics of caregiving and disability management in St. Kitts and Nevis. The qualitative approach was chosen to allow for an in-depth exploration of lived experiences, social meanings, and structural conditions that shape caregiving practices\u0026mdash;particularly those that are not readily captured through quantitative measures (Creswell \u0026amp; Poth, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). The approach was selected for its capacity to generate rich, context-specific insights into complex social phenomena (Yin, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2018\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cb\u003eResearch Design and Rationale\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe case study method was appropriate for examining caregiving in a bounded system\u0026mdash;St. Kitts and Nevis\u0026mdash;where the socio-cultural, historical, and policy context is critical to understanding disability management (Yin, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2018\u003c/span\u003e). The approach is also aligned with calls for context-sensitive disability research in underrepresented Global South settings (Grech, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2015\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cb\u003eSampling Strategy\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe study used purposive sampling to identify key participants involved in disability caregiving. These included: family caregivers of persons with developmental or physical disabilities, healthcare professionals such as nurses, community health aides, and rehabilitation workers, and local stakeholders involved in in social services, disability advocacy, and education. Participants were selected based on their experience and geographic diversity across the islands.\u003c/p\u003e\u003cp\u003eA total of \u003cb\u003e20 participants\u003c/b\u003e were selected based on criteria such as caregiving experience, professional involvement in disability services, and geographic representation across rural and urban areas on both islands. Ethical approval was obtained through relevant local institutional review boards, and all participants gave informed consent.\u003c/p\u003e\u003cp\u003e\u003cb\u003eData Collection\u003c/b\u003e\u003c/p\u003e\u003cp\u003eData were collected over a three-month period through semi-structured interviews (lasting 45\u0026ndash;60 minutes) conducted face-to-face or via secure video conferencing platforms and document analysis of local disability policies, national disability policies, Caribbean regional health frameworks, and relevant NGO reports frameworks. Interviews were audio-recorded, transcribed, and conducted in secure settings. Interview guides were informed by the conceptual framework and piloted with local stakeholders to ensure cultural relevance.\u003c/p\u003e\u003cdiv id=\"Sec2\" class=\"Section2\"\u003e\u003ch2\u003eData Analysis\u003c/h2\u003e\u003cp\u003eInterview transcripts and documents were analyzed using \u003cb\u003ethematic analysis\u003c/b\u003e (Braun \u0026amp; Clarke, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2006\u003c/span\u003e), facilitated by qualitative data management software (e.g., NVivo). The analysis followed a six-phase process: familiarization, coding, theme generation, theme review, theme definition, and report writing. Themes were iteratively refined to capture patterns across individual, family, cultural, and systemic levels.\u003c/p\u003e\u003cp\u003eTriangulation of data sources (interviews and documents) and participant validation (member checks) enhanced the credibility and trustworthiness of findings. Reflexivity was maintained throughout the research process to account for researcher positionality and cultural bias (Lincoln \u0026amp; Guba, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e1985\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cb\u003eMethodological Contribution\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis study contributes methodologically by integrating an underutilized Caribbean context into the global discourse on disability caregiving. It also demonstrates the utility of qualitative, inductive approaches in developing frameworks that are grounded in local realities and adaptable for clinical and policy application.\u003c/p\u003e"},{"header":"Research Findings","content":"\u003cp\u003eThe thematic analysis of interviews and policy documents revealed four overarching themes that define the caregiving and disability management landscape in St. Kitts and Nevis. These findings highlight the complex, layered nature of caregiving experiences and the systemic challenges within the local context.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003e1. Informal Caregiving as the Primary Support Structure\u003c/h3\u003e\n\u003cp\u003eParticipants consistently reported that \u003cb\u003efamily-based and informal caregiving networks\u003c/b\u003e form the backbone of disability care. With limited access to institutional or residential facilities, caregiving is often undertaken by mothers, grandmothers, or older siblings, many of whom lack formal training.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I never got any training. I just had to learn as I went along. The hospital gave me a list of things, but everything else was trial and error.\u0026rdquo;\u003c/em\u003e \u0026ndash; Female caregiver, rural St. Kitts\u003c/p\u003e\u003cp\u003eThis finding reflects the broader Caribbean caregiving trend documented by Bain et al. (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2019\u003c/span\u003e), where structural underinvestment in disability care reinforces dependence on family labor.\u003c/p\u003e\n\u003ch3\u003e2. Cultural Stigma and Misunderstanding of Disability\u003c/h3\u003e\n\u003cp\u003eCaregivers and professionals highlighted \u003cb\u003epersistent cultural stigma\u003c/b\u003e surrounding disability, especially developmental disorders. Some respondents noted beliefs linking disability to spiritual causes or punishment, leading to social exclusion and emotional strain.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;Some people still think it\u0026rsquo;s obeah. They say I must have done something wrong. That kind of talk makes it harder to come out and ask for help.\u0026rdquo;\u003c/em\u003e \u0026ndash; Parent of child with autism\u003c/p\u003e\u003cp\u003eThis echoes earlier work by Cohen and Wilson (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2017\u003c/span\u003e), who emphasized the role of postcolonial belief systems in shaping Caribbean attitudes toward disability.\u003c/p\u003e\n\u003ch3\u003e3. Gaps in Public Infrastructure and Policy Implementation\u003c/h3\u003e\n\u003cp\u003eThough disability policies exist in principle, participants noted that \u003cb\u003eimplementation is weak\u003c/b\u003e, with fragmented services and inconsistent support. Services like speech therapy, occupational therapy, or respite care are rare, particularly outside urban centers.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;We have laws, but where are the services? You wait months for appointments. Most of the time, we just do without.\u0026rdquo;\u003c/em\u003e \u0026ndash; Health worker, Nevis\u003c/p\u003e\u003cp\u003eThe findings align with WHO/PAHO (2022) reports identifying health system constraints in Caribbean SIDS, such as limited human resources, funding, and coordination.\u003c/p\u003e\n\u003ch3\u003e4. Caregiver Resilience and Adaptive Coping Mechanisms\u003c/h3\u003e\n\u003cp\u003eDespite the challenges, caregivers demonstrated \u003cb\u003estrong resilience and adaptive strategies\u003c/b\u003e, including peer support groups, informal resource sharing, and spiritual coping.\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;My church is my therapy. They pray with me, and some of the ladies have children like mine. We learn from each other.\u0026rdquo;\u003c/em\u003e \u0026ndash; Caregiver, Basseterre\u003c/p\u003e\u003cp\u003eThis aligns with Schulz and Sherwood (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2008\u003c/span\u003e), who suggest that informal networks and religious coping can be protective factors in high-stress caregiving contexts.\u003c/p\u003e\u003cp\u003eThese four themes including informal caregiving dominance, cultural stigma, infrastructural gaps, and adaptive resilience interact across ecological levels. Together, they validate the multidimensional conceptual framework proposed in this study. The findings emphasize the urgent need for \u003cb\u003eculturally informed, locally grounded caregiving interventions\u003c/b\u003e that go beyond policy rhetoric to empower caregivers and improve service delivery for persons with disabilities in St. Kitts and Nevis.\u003c/p\u003e\u003cp\u003e\u003cb\u003eMultidimensional Conceptual Framework\u003c/b\u003e\u003c/p\u003e"},{"header":"Discussion of Findings","content":"\u003cp\u003eThe results of this study illuminate the deeply intertwined socio-cultural, structural, and emotional dimensions of caregiving for persons with developmental and physical disabilities in St. Kitts and Nevis. Through the lens of the multidimensional conceptual framework, the discussion below synthesizes how these findings both confirm and extend existing theoretical models, while offering new insights relevant to small island developing states (SIDS).\u003c/p\u003e\n\u003ch3\u003e1. Informal Caregiving and the Burden of Responsibility\u003c/h3\u003e\n\u003cp\u003eThe study underscores the critical role of informal caregivers\u0026mdash;primarily family members\u0026mdash;in the absence of robust institutional support. Participants described caregiving as a labor-intensive and emotionally demanding role often undertaken without financial compensation or adequate training. This finding is consistent with Schulz and Sherwood (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2008\u003c/span\u003e), who emphasize the physical and psychological toll of informal caregiving in the absence of professional supports.\u003c/p\u003e\u003cp\u003eHowever, in the St. Kitts and Nevis context, the dependency on informal care is not merely a function of family values, but a necessity shaped by under-resourced health systems. Caregivers reported learning \u0026ldquo;on the job\u0026rdquo; without standardized training\u0026mdash;paralleling observations by Bain et al. (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2019\u003c/span\u003e) that Caribbean caregivers often operate in knowledge vacuums due to systemic neglect of disability-specific training and resources.\u003c/p\u003e\u003cp\u003eThis reliance on informal networks also aligns with Bronfenbrenner\u0026rsquo;s (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e1979\u003c/span\u003e) ecological systems theory, as caregiving behaviors and burdens are not formed in isolation but are embedded within broader community and institutional environments shaped by interactions across multiple systemic levels\u0026mdash;from individual caregiver traits to national policy implementation. For instance, caregiver resilience and reliance on spiritual coping (individual and community levels) exist in tension with systemic barriers such as the lack of access to disability-specific services (institutional level).\u003c/p\u003e\n\u003ch3\u003e2. Cultural Stigma and Spiritual Interpretations of Disability\u003c/h3\u003e\n\u003cp\u003eA recurrent theme across interviews was the persistence of cultural stigma associated with disability, including beliefs that frame disability as a punishment, curse, or the result of supernatural intervention. These attitudes not only hinder social inclusion but also discourage caregivers from seeking support due to fear of judgment or shame.\u003c/p\u003e\u003cp\u003eThese results support Cohen and Wilson\u0026rsquo;s (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2017\u003c/span\u003e) argument that postcolonial legacies and spiritual interpretations of illness continue to shape Caribbean health perceptions. The internalization of stigma among caregivers often resulted in isolation and reluctance to participate in public advocacy or rehabilitation programming. This reinforces the social model of disability (Oliver, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e1990\u003c/span\u003e), which posits that disability is not merely a medical condition but a result of societal exclusion and discrimination. Oliver\u0026rsquo;s Social Model of Disability (1990), attributes the disabling experience not only to impairments but to the inaccessibility of environments and social attitudes. Cultural beliefs and stigma in St. Kitts and Nevis marginalize persons with disabilities, further burdening caregivers emotionally and socially (Cohen \u0026amp; Wilson, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e2017\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe pervasiveness of stigma also underscores the need for culturally adapted public education campaigns to reframe disability as a human rights and inclusion issue rather than a moral or spiritual failing.\u003c/p\u003e\n\u003ch3\u003e3. Structural Gaps and Inequitable Access to Services\u003c/h3\u003e\n\u003cp\u003eThe findings further highlight \u003cb\u003esignificant structural limitations\u003c/b\u003e within the public healthcare and disability support systems. Participants reported long wait times, minimal access to specialized services (e.g., occupational therapy), and geographic disparities in resource availability\u0026mdash;especially in rural or economically disadvantaged communities.\u003c/p\u003e\u003cp\u003eThese gaps reflect the broader challenges identified by WHO/PAHO (2022) regarding health system fragility in the Caribbean, where small population sizes and constrained budgets limit investment in specialized care. In the context of Engel\u0026rsquo;s (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e1977\u003c/span\u003e) \u003cb\u003ebiopsychosocial model\u003c/b\u003e, this lack of institutional support hinders the holistic wellbeing of both caregivers and care recipients. Engel\u0026rsquo;s \u003cb\u003eBiopsychosocial Model\u003c/b\u003e (1977) is evident in the way caregivers described the physical, emotional, and social demands of caregiving. The absence of professional support services often leads caregivers to develop personal coping mechanisms, echoing Ghosh et al. (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2020\u003c/span\u003e) on the global invisibility of long-term care in under-resourced settings.\u003c/p\u003e\u003cp\u003eThe disconnect between policy rhetoric and implementation\u0026mdash;where disability rights frameworks exist on paper but are not translated into practice\u0026mdash;also reflects the findings of Grech (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2015\u003c/span\u003e), who critiques the performativity of disability policies in the Global South. Caregivers in this study routinely expressed frustration with \u003cb\u003etokenistic or inaccessible programs\u003c/b\u003e, reinforcing the need for \u003cb\u003ecommunity-driven, contextually grounded service delivery models\u003c/b\u003e.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\n\u003ch3\u003e4. Caregiver Resilience and Adaptive Strategies\u003c/h3\u003e\n\u003cp\u003eDespite the burdens and systemic gaps, caregivers demonstrated remarkable resilience, using \u003cb\u003eadaptive coping strategies\u003c/b\u003e to meet daily challenges. These included drawing on religious faith, informal knowledge-sharing with other caregivers, and seeking emotional refuge in community networks.\u003c/p\u003e\u003cp\u003eThis finding resonates with the work of Ghosh et al. (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e2020\u003c/span\u003e), who emphasize the importance of \u003cb\u003ecaregiver agency and informal resilience mechanisms\u003c/b\u003e, especially in contexts where state support is absent or unreliable. It also supports Bronfenbrenner\u0026rsquo;s (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e1979\u003c/span\u003e) assertion that microsystem-level interactions (e.g., family, peer support, religious involvement) can provide critical buffers against the stress induced by macrosystem-level constraints.\u003c/p\u003e\u003cp\u003eThese resilience strategies, while admirable, should not be used to justify systemic neglect. Rather, they highlight the need for co-produced solutions that build on community strengths while addressing institutional deficits.\u003c/p\u003e\u003cp\u003eBy integrating the biopsychosocial, social, and ecological theoretical models, this research underscores the importance of multidimensional approaches to disability management in low-resource and culturally diverse settings. Moreover, the dominance of informal caregiving and underfunded public health services reinforce the argument that caregiving in postcolonial, small-island contexts is a structural issue, not simply a private burden (Grech, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2015\u003c/span\u003e; WHO/PAHO, 2022). Despite these challenges, the study highlights caregiver agency and resilience, aligning with Schulz and Sherwood (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2008\u003c/span\u003e), who argue that emotional, religious, and social resources are key buffers against caregiver burnout.\u003c/p\u003e\u003cp\u003e\u003cb\u003eKey Contributions\u003c/b\u003e\u003c/p\u003e\u003cp\u003e This research contributes original empirical data from a neglected geographic context, emphasizing the role of historical, cultural, and economic factors in shaping caregiving. It challenges the assumption that global disability care frameworks can be universally applied, calling for localized, participatory solutions that acknowledge the realities of caregivers in SIDS. This study also makes a contribution to the disability and caregiving literature by provides the first conceptual framework tailored to caregiving in St. Kitts and Nevis, grounded in both global disability theory and Caribbean-specific realities. The research offers actionable insights for health policymakers and practitioners seeking to bridge formal service gaps with community-based solutions. The findings centering the experiences of caregivers in a previously under-researched SIDS context, demonstrating how macro-structural constraints and cultural scripts intersect with everyday caregiving, and providing a visual and theoretically grounded framework that can guide culturally responsive interventions and policy reforms. The findings contributes to the \u003cem\u003eJournal of Developmental and Physical Disabilities\u003c/em\u003e by presenting a clinically relevant, culturally situated, and evidence-informed model for disability support.\u003c/p\u003e\u003cp\u003e\u003cb\u003eConclusion and Policy/Practice Implications\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThis study sheds light on the structural, cultural, and interpersonal dimensions of caregiving for persons with disabilities in St. Kitts and Nevis. It offers a novel conceptual framework grounded in lived experience and theory, suitable for guiding clinical, policy, and community-based interventions.\u003c/p\u003e\u003cp\u003e\u003cb\u003ePolicy and Practice Recommendations\u003c/b\u003e:\u003c/p\u003e\u003cp\u003eExpand formal care services through decentralization and mobile outreach, Implement caregiver training and integrate it into public health systems, Launch public awareness campaigns to address stigma, Introduce financial and emotional support systems for caregivers and Foster participatory policy design with caregiver and disability community input. This research provides a foundation for future studies and offers practical tools for stakeholders to build equitable, resilient, and culturally grounded caregiving systems in the Caribbean and beyond.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthical Approval\u003c/strong\u003e (Not applicable)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003e– No funding received\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of Data and Materials\u003c/strong\u003e\u003cbr\u003e\u0026nbsp;The qualitative data supporting the findings of this study are available from the corresponding author upon reasonable request. Due to the sensitive nature of interviews involving caregivers and persons with disabilities, data have been anonymized to protect participant confidentiality in accordance with ethical approval standards.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors Contributions\u003c/strong\u003e - RC wrote the manuscript\u003cbr\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAll authors read and approved the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of Interest Statement\u003c/strong\u003e – No conflict of interest\u003cbr\u003e\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAlleyne, G., Lewis-Fuller, E., \u0026amp; Fraser, H. (2021). \u003cem\u003eThe Caribbean health context: From colonial to community-oriented systems\u003c/em\u003e. Caribbean Public Health.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBain, B., Ferguson, T. S., \u0026amp; Samms-Vaughan, M. (2019). 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Sage.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Caregiving, Disability, Small Island Developing States, Caribbean, Qualitative Research, Conceptual Framework, Informal Care, Stigma, Policy Reform","lastPublishedDoi":"10.21203/rs.3.rs-7267050/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7267050/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eThis study investigates caregiving and disability management in St. Kitts and Nevis through a multidimensional lens that integrates clinical, cultural, and contextual factors relevant to the care of individuals with developmental and physical disabilities. Employing a qualitative synthesis approach, the research draws on regional policy reviews and semi-structured interviews with caregivers, healthcare professionals, and community stakeholders. Thematic analysis uncovers key determinants shaping caregiving practices, including caregiver resilience, type and severity of disability, health infrastructure, and prevailing social norms. Findings reveal critical gaps in formal disability services, overreliance on informal care networks, and limited access to culturally adapted interventions\u0026mdash;challenges compounded by geographic isolation and socio-economic constraints. In response, the study proposes a conceptual framework grounded in rehabilitation, social work, and community health theory to support integrated and inclusive caregiving models. This framework offers a practical tool for clinicians, service providers, and policymakers seeking to develop context-sensitive and sustainable care strategies. By centering the Caribbean caregiving experience, this research contributes original insight to the interdisciplinary literature by providing the first conceptual framework tailored to caregiving in St. Kitts and Nevis, grounded in both global disability theory and Caribbean-specific realities. It also offers actionable insights for health policymakers and practitioners seeking to bridge formal service gaps with community-based solutions.\u003c/p\u003e","manuscriptTitle":"A Multidimensional Analysis of Caregiving and Disability Management in St. Kitts and Nevis: Challenges, Resilience, and Policy Implications","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-08-28 13:23:54","doi":"10.21203/rs.3.rs-7267050/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"1b150aeb-96d2-44e2-8ba8-a684b6290eef","owner":[],"postedDate":"August 28th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-08-28T13:23:54+00:00","versionOfRecord":[],"versionCreatedAt":"2025-08-28 13:23:54","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7267050","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7267050","identity":"rs-7267050","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}