Adoptive Parenting and Making Care Possible in Contexts of Disability
DOI:
https://doi.org/10.12707/RVI26.7.45218Keywords:
adoption, persons with disabilities, adoptive parents, continuity of patient care, patient advocacy, phenomenologyAbstract
Background: Adopting children with disabilities challenges norms of care and belonging.
Objective: To understand how care is expressed and sustained every day by families with adopted children with disabilities.
Methodology: A qualitative phenomenological-hermeneutic study based on interviews with primary caregivers (n = 11), conducted between November 2023 and June 2024 in southern Brazil, using iterative part–whole analysis.
Results: Five dimensions emerged — (1) Addressing incomplete information and institutional barriers; (2) Organizing flexible routines in the face of the unpredictable; (3) Activating support networks and advocating for rights; (4) Building connections and a sense of belonging in everyday life; (5) Recognizing what makes care possible. Participants portray care as translation, clinical co-authorship, and an architecture of the ordinary across homes, services, and cities.
Conclusion: Over time, caring builds worlds: families create conditions for care by translating opacity, weaving responsive networks, and introducing plans that breathe. The PPCC model is recommended for communicating care and guiding flexible daily plans.
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References
Antosh, S., Drennan, C., Stolfi, A., Lawson, R., Huntley, E., Mc- Cullough-Roach, R., Hill, M., Adelekan, T., & Vachhrajani, S. (2024). Use of an adaptive sensory environment in patients with autism spectrum disorder (ASD) in the perioperative environment: A parallel, randomized controlled trial. The Lancet Regional Health – Americas, 33, 100736. https://doi.org/10.1016/j.lana.2024.100736
Braun, V., & Clarke, V. (2024). How do you solve a problem like COREQ? A critique of Tong et al.’s (2007) consolidated criteria for reporting qualitative research. Methods in Psychology, 11, 100155. https://doi.org/10.1016/j.metip.2024.100155
Collière, M. F. (1999). Promover a vida: Da prática das mulheres de virtude aos cuidados de enfermagem. Sindicato dos Enfermeiros Portugueses.
Resolução nº 510/2016 do Conselho Nacional de Saúde. (2016). Diário Oficial da União, Seção 1, 44–46.
Coupé, C., & Ollagnier-Beldame, M. (2022). Toward a phenomenologyof taking care. International Journal of Qualitative Studies on Health and Well-Being, 17(1), 2045671. https://doi.org/10.1080/17482631.2022.2045671
Djukanovic, I., Hellström, A., Wolke, A., & Schildmeijer, K. (2024). The meaning of continuity of care from the perspective of older people with complex care needs: A scoping review.
Geriatric Nursing, 55, 354–361. https://doi.org/10.1016/j.gerinurse.2023.12.016
Gréaux, M., Moro, M. F., Kamenov, K., Russell, A. M., Barrett, D., & Cieza, A. (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, 236. https://doi.org/10.1186/s12939-023-02035-w
Hurley, G., Curtis, K., & Hammond, J. A. (2022). Hermeneutic phenomenological research on how nurse educators make meaning of compassion and understand its role in their professional practice. Nurse Education Today, 119, 105588. https://doi.org/10.1016/j.nedt.2022.105588
Kerrissey, M., Satterstrom, P., Pae, J., & Albert, N. M. (2024). Overcoming walls and voids: Responsive practices that enable frontline workers to feel heard. Health Care Management Review, 49(2), 116–126. https://doi.org/10.1097/HMR.0000000000000397
Khatri, R., Endalamaw, A., Erku, D., Wolka, E., Nigatu, F., Zewdie, A., Assefa, Y. (2023). Continuity and care coordination of primary health care: A scoping review. BMC Health Services Research, 23, 750. https://doi.org/10.1186/s12913-023-09718-8
Mitra, M., Long-Bellil, L., Moura, I., Miles, A., & Kaye, H. S. (2022). Advancing health equity and reducing health disparities for people with disabilities in the United States. Health Affairs, 41(10), 1379–1386. https://doi.org/10.1377/hlthaff.2022.00499
Norlyk, A., Martinsen, B., Dreyer, P., & Haahr, A. (2023). Why phenomenology came into nursing: The legitimacy and usefulness of phenomenology in theory building in the discipline of nursing. International Journal of Qualitative Methods, 22, 1–9. https://doi.org/10.1177/16094069231210433
Rentmeester, C., & Liebzeit, M. (2023). A Gadamerian approach to nursing: Merging philosophy with practice. Nursing Philosophy, 24(3), e12453. https://doi.org/10.1111/nup.12453
Santos, M. T., Halberstadt, B. M., Trindade, C. R., Lima, M. A., & Aued, G. K. (2022). Continuity and coordination of care: Conceptual interface and nurses’ contributions. Revista da Escola de Enfermagem da USP, 56, e20220100. https://doi.org/10.1590/1980-220XREEUSP-2022-0100en
Taylor, J. L., DaWalt, L. S., Burke, M. M., Xu, M., & Slaughter, J. C. (2023). Improving parents’ ability to advocate for services for youth with autism: A randomized clinical trial. Autism Research, 16(10), 1976–1988. https://doi.org/10.1002/aur.3001
Van Pijkeren, N., Schuurmans, J., Wallenburg, I., & Bal, R. (2024). The night is for sleeping: How nurses care for conflicting temporal orders in older person care. Health Sociology Review, 33(1), 10–23. https://doi.org/10.1080/14461242.2024.231673
Waldow, V. R. (2012). Cuidado humano: O resgate necessário (5.ª ed.). Sagra Luzzatto.
Walløe, S., Beck, M., Lauridsen, H. H., Morsø, L., & Simonÿ, C. (2024). Quality in care requires kindness and flexibility: A hermeneutic-phenomenological study of patients’ experiences from pathways including transitions across healthcare settings. BMC Health Services Research, 24(1), 117. https://doi.org/10.1186/s12913-024-10545-8
