While systemic healthcare challenges in low-resource settings are well-documented in Haiti, the lived experiences of persons with disabilities navigating these challenges remain underexplored. This study examines how Haitian adults with physical disabilities acquired during the country's most devastating earthquake address their health needs amid unreliable healthcare access. Using Interpretative Phenomenological Analysis (IPA) of semistructured interviews with 25 participants, the analysis identifies three key strategies: (a) leveraging community efforts to build informal caregiving networks, (b) co-constructing caregiving practices through mutual teaching and experiential knowledge, and (c) adapting caregiving roles to address healthcare gaps under resource constraints. These strategies illustrate both the potential and the limitations of community-driven caregiving in contexts where formal support is needed. Participants redefined caregiving as a relational and adaptive process that integrates individual and collective efforts to navigate systemic barriers. Findings underscore the importance of community-based interventions that amplify local innovations and address the specific needs of underserved populations.
ArnaoutiM. K. C.CahillG.BairdM. D.ManguratL.HarrisR.EdmeL. P. P.JosephM. N.WorltonT.AugustinS.Jr., & Haiti Disaster Response – Junior Research Collaborative (HDR-JRC). (2022). Medical disaster response: A critical analysis of the 2010 Haiti earthquake. Frontiers in Public Health, 10, 995595. https://doi.org/10.3389/fpubh.2022.995595
3.
ArxerS. L.del Puy CirizaM.ShappeckM. (2018). Qualitative and participatory action research. In ArxerS.MurphyJ. (eds), Dimensions of community-based projects in health care (pp. 25–35). Springer.
4.
AulenbacherB.LutzH.RiegrafB. (2018). Introduction: Towards a global sociology of care and care work. Current Sociology, 66(4), 495–502. https://doi.org/10.1177/0011392118765245
5.
AurelusE.SaintilI. (2020). Health disparity in Haiti due to the economic system of the country. Frontiers in Medical Case Reports, 1(4), 1–6. https://doi.org/10.47746/FMCR.2020.1407
6.
BaranyiS.LouisI. (2016). (Dis)ability and development in Haiti: Beyond one-dimensional views. Third World Thematics: A TWQ Journal, 1(3), 321–334. https://doi.org/10.1080/23802014.2016.1216328
7.
BeltR. V.JacquesN.PierreL.GreigE.RahimiK. (2024). Providing healthcare under the threat of gang violence: A survey of Haitian healthcare providers. Conflict and Health, 18, 53. https://doi.org/10.1186/s13031-024-00612-6
8.
BoroE.StollB. (2022). Barriers to COVID-19 health products in low- and middle-income countries during the COVID-19 pandemic: A rapid systematic review and evidence synthesis. Frontiers in Public Health, 10, 928065. https://doi.org/10.3389/fpubh.2022.928065
9.
BurgessC. P.JohnstonF. H.BerryH. L.McDonnellJ.YibarbukD.GunabarraC.MileranA.BailieR. S. (2009). Healthy country, healthy people. Communication, Culture and Health, 190(10), 567–572. https://doi.org/10.5694/j.1326-5377.2009.tb02566.x
10.
CharalambousA. (2023). Caregiving and caregivers: Concepts, caregiving models, and systems. In CharalambousA. (ed.), Informal caregivers: From hidden heroes to integral part of care. Springer. https://doi.org/10.1007/978-3-031-16745-4_1
11.
ClairC. A.TobinK. E.TaylorJ. L. (2023). Caregiver burden and its limitations in describing Black caregivers’ experience. Current Geriatrics Reports, 12(3), 228–234. https://doi.org/10.1007/s13670-023-00402-7
CronkR.BartramJ. (2018). Environmental conditions in health care facilities in low- and middle-income countries: Coverage and inequalities. International Journal of Hygiene and Environmental Health, 221(3), 409–422. https://doi.org/10.1016/j.ijheh.2018.01.004
14.
DanquahL.PolackS.BrusA.MactaggartI.Perrin HoudonC.SeniaP.GallienP.KuperH. (2015). Disability in post-earthquake Haiti: Prevalence and inequality in access to services. Disability and Rehabilitation, 37(12), 1082–1089. https://doi.org/10.3109/09638288.2014.956186
15.
DesRochesR.ComerioM.EberhardM.MooneyW.RixG. J. (2011). Overview of the 2010 Haiti earthquake. Earthquake Spectra, 27(S1), 1–21. https://doi.org/10.1193/1.3630129
16.
DowellS. F.TapperoJ. W.FriedenT. R. (2011). Public health in Haiti—Challenges and progress. The New England Journal of Medicine, 364(4), 300–301. https://doi.org/10.1056/NEJMp1100118
17.
DrenteaP. (2007). Caregiving. In RitzerR. (ed.), Blackwell encyclopedia of sociology. Blackwell Reference Online. http://www.blackwellreference.com
GBD 2019 Diseases and Injuries Collaborators. (2020). Global burden of 369 diseases and injuries in 204 countries and territories, 1990–2019: A systematic analysis for the Global Burden of Disease Study 2019. The Lancet, 396(10258), 1204–1222. https://doi.org/10.1016/S0140-6736(20)30925-9
21.
GérainP.ZechE. (2019). Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Frontiers in Psychology, 10, 1748. https://doi.org/10.3389/fpsyg.2019.01748
22.
GillemanL. (2024). Study of the influence of the United States-Haiti relationship on Haiti’s climate resilience: How is the climate resilience of Haiti affected by the neocolonialism perpetuated by the United States? [Master’s thesis]. Ghent University. https://libstore.ugent.be/fulltxt/RUG01/003/213/932/RUG01-003213932_2024_0001_AC.pdf
23.
GréauxM.MoroM. F.KamenovK.RussellA. M.BarrettD.CiezaA. (2023). Health equity for persons with disabilities: A global scoping review on barriers and interventions in healthcare services. International Journal for Equity in Health, 22(1), 236. https://doi.org/10.1186/s12939-023-02035-w
24.
GrechS. (2011). Recolonizing debates or perpetuated coloniality? Decentering the spaces of disability, development, and community in the Global South. International Journal of Inclusive Education, 15(1), 87–100. https://doi.org/10.1080/13603116.2010.496198
25.
GrechS.SoldaticK. (Eds.). (2016). Disability in the global South: The critical handbook. Springer.
26.
GuillaumeD.ThermyR.SternbergC.SemeJ.MontourT.BivinsB.JeanP.BarnettJ.NicolasG. (2023). Decolonization of global health in Haiti: A call for equity, partnerships, scholarship, and informed action. Global Health: Science and Practice, 11(3), https://doi.org/10.9745/GHSP-D-22-00298
HeineM.HanekomS. (2023). Chronic disease in low-resource settings: Prevention and management throughout the continuum of care—a call for papers. International Journal of Environmental Research and Public Health, 20(4), 3580. https://doi.org/10.3390/ijerph20043580
29.
HoganU.BingleyA.MorbeyH.WalsheC. (2022). The experience of informal caregivers in providing patient care in hospitals in low- and middle-income countries: A qualitative meta-synthesis. Journal of Health Services Research & Policy, 27(4), 321–329. https://doi.org/10.1177/13558196221101968
30.
JeromeG.MyersL. C. (2010). Community health workers in health systems strengthening: A qualitative evaluation from rural Haiti. Aids (London, England), 24(Suppl 1), S67–S72. https://doi.org/10.1097/01.aids.0000366084.75945.c9
31.
KhanT.AbimbolaS.KyobutungiC.PaiM. (2022). How we classify countries and people—and why it matters. BMJ Global Health, 7(6), e009704. https://doi.org/10.1136/bmjgh-2022-009704
32.
KrukM. E.GageA. D.ArsenaultC.JordanK.LeslieH. H.Roder-DeWanS.AdeyiO.BarkerP.DaelmansB.DoubovaS. V.EnglishM.García-ElorrioE.GuanaisF.GurejeO.HirschhornL. R.JiangL.KelleyE.LemangoE. T.LiljestrandJ., … PateM. (2018). High-quality health systems in the Sustainable Development Goals era: Time for a revolution. The Lancet Global Health, 6(11), e1196–e1252. https://doi.org/10.1016/S2214-109X(18)30386-3
33.
LambertS. D.BoweS. J.LivingstonP. M.HeckelL.CookS.KowalP.OrellanaL. (2017). Impact of informal caregiving on older adults’ physical and mental health in low-income and middle-income countries: A cross-sectional, secondary analysis based on the WHO's study on global aging and adult health (SAGE). BMJ Open, 7(11), e017236. https://doi.org/10.1136/bmjopen-2017-017236
34.
LamourS. (2021). Between intersectionality and coloniality: Rereading the figure of the Poto-Mitan woman in Haiti. Women, Gender, and Families of Color, 9(2), 136–151. https://muse.jhu.edu/article/877955
35.
LandryM. D.O’ConnellC.TardifG.BurnsA. (2010). Post-earthquake Haiti: The critical role for rehabilitation services following a humanitarian crisis. Disability and Rehabilitation, 32(19), 1616–1618. https://doi.org/10.3109/09638288.2010.500345
36.
LencuchaR.NeupaneS. (2022). The use, misuse and overuse of the ‘low-income and middle-income countries’ category. BMJ Global Health, 7, e009067. https://doi.org/10.1136/bmjgh-2022-009067
37.
LowranceD. W.TapperoJ. W.PonceletJ. L.EtienneC.FriedenT. R.DelsoinsD. (2017). Public health progress in Haiti. The American Journal of Tropical Medicine and Hygiene, 97(4 Suppl), 1–3. https://doi.org/10.4269/ajtmh.17-0347
MurthyS.AdhikariN. K. (2013). Global health care of the critically ill in low-resource settings. Annals of the American Thoracic Society, 10(5), 509–513. https://doi.org/10.1513/AnnalsATS.201307-246OT
42.
NkambuleS.MsiskaG. (2024). Chronic illness experience in the context of resource-limited settings: A concept analysis. International Journal of Qualitative Studies on Health and Well-Being, 19(1), 2378912. https://doi.org/10.1080/17482631.2024.2378912
43.
N’Zengou-TayoM.-J. (1998). Fanm se poto mitan: Haitian woman, the pillar of society. Feminist Review, 59(1), 118–142. https://doi.org/10.1080/014177898339497
44.
Office de la Protection du Citoyen [Office of the Ombudsperson]. (2018). Rapport alternatif sur l’application de la convention relative aux droits des personnes handicapées. https://www.opchaiti.com/publication/rapport/142
45.
OleribeO. O.MomohJ.UzochukwuB. S.MbofanaF.AdebiyiA.BarberaT.WilliamsR.Taylor-RobinsonS. D. (2019). Identifying key challenges facing healthcare systems in Africa and potential solutions. International Journal of General Medicine, 12, 395–403. https://doi.org/10.2147/IJGM.S223882
46.
OlivierD. (2021). The political anatomy of Haiti’s armed gangs: In Port-au-Prince, botched NGO and military interventions have fragmented urban space, triggering an explosive proliferation of violent armed groups. NACLA Report on the Americas, 53(1), 83–87. https://doi.org/10.1080/10714839.2021.1891648
PeterieM.BroomA. (2024). Conceptualising care: Critical perspectives on informal care and inequality. Social Theory & Health, 22, 53–70. https://doi.org/10.1057/s41285-023-00200-3
Purdie-VaughnsV.EibachR. P. (2008). Intersectional invisibility: The distinctive advantages and disadvantages of multiple subordinate-group identities. Sex Roles, 59(5-6), 377–391. https://doi.org/10.1007/s11199-008-9424-4
53.
RainhornJ.-D. (2012). Haïti. Réinventer l’avenir. Éditions de la Maison des Sciences de l’Homme; Éditions de L’Université d’État d’Haïti.
54.
Sanjuán-QuilesÁ.Alcañiz-GarránM. D. M.Montejano-LozoyaR.Ramos-PichardoJ. D.García-SanjuánS. (2023). La perspectiva de las personas cuidadoras desde un análisis de género [The perspective of caregivers from a gender analysis]. Revista Española de Salud Pública, 97, e202307062. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10541258/
55.
SchulzR.TompkinsC. A. (2010). Informal caregivers in the United States: Prevalence, caregiver characteristics, and ability to provide care. In OlsonS. (ed.), The role of human factors in home health care: Workshop summary (pp. 322). National Academies Press.
56.
SchutzA.LuckmannT. (1974). The structure of the lifeworld. Northwestern University Press.
57.
SeideK. (2022). Bringing in the black body: A phenomenological study of disability among Haitian earthquake survivors [Doctoral dissertation, University of Miami]. University of Miami Scholarly Repository. https://scholarship.miami.edu/esploro/outputs/991031690717302976
SripadP.CasseusA.KennedyS.IsaacB.VissieresK.WarrenC. E.TernierR. (2021). “Eternally restarting” or “a branch line of continuity”? Exploring consequences of external shocks on community health systems in Haiti. Journal of Global Health, 11, 07004. https://doi.org/10.7189/jogh.11.07004
60.
ThrushA.HyderA. (2014). The neglected burden of caregiving in low- and middle-income countries. Disability and Health Journal, 7(3), 262–272. https://doi.org/10.1016/j.dhjo.2014.01.003
van ZylC.BadenhorstM.HanekomS.HeineM. (2021). Unravelling ‘low-resource settings’: A systematic scoping review with qualitative content analysis. BMJ Global Health, 6, e005190. https://doi.org/10.1136/bmjgh-2021-005190
65.
WennbergA.-M.AndersonL. R.CagninA.Chen-EdinboroL. P.PiniL. (2023). How both positive and burdensome caregiver experiences are associated with care recipient cognitive performance: Evidence from the National Health and Aging Trends Study and National Study of Caregiving. Frontiers in Public Health, 11, 1130099. https://doi.org/10.3389/fpubh.2023.1130099
World Health Organization. (2011). World report on disability. World Health Organization. https://www.who.int/publications/i/item/9789241564182
69.
World Health Organization. (2022, December 2). Health inequities lead to early death in many persons with disabilities. https://www.who.int/news/item/02-12-2022-health-inequities-lead-to-early-death-in-many-persons-with-disabilities
