Disabled pregnant women: overview of pre-delivery care available in Brazil and worldwide

Authors

DOI:

https://doi.org/10.5965/2316796313252024003

Keywords:

disabled pregnant women, pre-delivery preparation, maternity, deficiency, health care

Abstract

The experiences lived during pregnancy can influence the quality of motherhood. When it comes to pregnant women with disabilities, the challenges are even greater. This study aimed to identify, through a systematic search, studies on the practices of aid and support for the preparation of disabled pregnant women and health professionals related to childbirth, in order to establish a picture of the current situation of how these women are being supported in Brazil and in the world. As a result, it was found that most studies report the experiences of both disabled pregnant women and health professionals, the needs of both in relation to their interactions, and few are discussed about solutions for these needs, demonstrating the relevance of this discussion.

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Author Biographies

Mariana Colin Stelzner, Santa Catarina State University

Master's degree in Design - Ergonomics and Human Factors in the Postgraduate Program in Design at the University of the State of Santa Catarina (UDESC). Architect and urban planner with a degree in Architecture and Urbanism from the Federal University of Santa Catarina (UFSC) and academic exchange at the Polytechnic University of Madrid- Spain (UPM ETSAM). Fluent English and Spanish. Research grant from the group PET / ARQ - UFSC for two and a half years in which they are investigated on the themes of Urban Landscape (2009), Urban Morphology (2011). Participation and awards in design competitions.

Milton José Cinelli, Santa Catarina State University

Possui graduação em Física Bacharelado pela Universidade Federal de Santa Catarina (1989), mestrado em Física pela Universidade Federal de Santa Catarina (1992) e doutorado em Chimie Physique Option Matériaux - Université de Limoges - França (1996). Professor Associado e Professor Permanente do Programa de Pós-Graduação em Design na linha Interfaces e Interações Físicas da Universidade do Estado de Santa Catarina. Tem experiência na área de Física, atuando principalmente nos seguintes temas: Tecnologias Assistivas, Metrologia, Técnicas Gerais de Laboratório, Sistemas de Instrumentações ópticos. Coordenador de Pesquisa Institucional da UDESC 2010-2016. Atuou como pesquisador/inventor no projeto de desenvolvimento da bengala eletrônica que culminou com a obtenção da patente, marca e desenho industrial. É um dos inventores do sistema de código de cores em revelo para percepção tátil destinado às pessoas cegas, baixa visão e daltônicos, concessão 10/01/2023, com sublicenciamento industrial para empresa SEE COLOR.

References

ANDREWS, E. E.; POWELL, R. M.; AYERS, K. B. Experiences of Breastfeeding among Disabled Women. Women’s Health Issues, 2020.

BASSOUMAH, B.; MOHAMMED, A. A. The socio-cultural challenges to maternal and neonatal care: The views of women with disabilities receiving maternity care in the Chereponi district of the Northern Ghana. Scientific African, v. 7, p. e00258, 2020.

BRASIL. MINISTÉRIO DA SAÚDE. DEPARTAMENTO DE ATENÇÃO BÁSICA. Diretrizes de Atenção à Saúde das Mulheres com Deficiência e Mobilidade Reduzida. 2018. Disponível em: https://portalarquivos2.saude.gov.br/images/pdf/2018/julho/10/Diretriz-mulher-com-deficiencia-Consulta-Publica.pdf . Acesso em: 11 nov. 2020.

BYRNES, L.; HICKEY, M. Perinatal Care for Women With Disabilities: Clinical Considerations. The Journal for Nurse Practitioners, v. 12, n. 8, p. 503–509, 2016.

CARVALHO, C. F. DA S.; BRITO, R. S. DE. Rede de apoio no ciclo gravídico-puerperal: Concepções de mulheres com deficiência física. Texto e Contexto Enfermagem, v. 25, n. 2, 2016.

CASTELL, E.; STENFERT KROESE, B. Midwives׳ experiences of caring for women with learning disabilities – A qualitative study. Midwifery, v. 36, p. 35–42, 2016.

CHEDID, R. A.; TERRELL, R. M.; PHILLIPS, K. P. Best practices for online Canadian prenatal health promotion: A public health approach. Women and Birth, v. 31, n. 4, p. e223–e231, 2018.

DARNEY, B. G. et al. Primary Cesarean Delivery Patterns among Women with Physical, Sensory, or Intellectual Disabilities. Women’s Health Issues, v. 27, n. 3, p. 336–344, 2017. HAYWARD, K. et al. Reproductive healthcare experiences of women with cerebral palsy. Disability and Health Journal, v. 10, n. 3, p. 413–418, 2017.

EQUIPE INCLUSIVE. Participação das Mulheres com Deficiência é crescente no Brasil. 2008. Disponível em: http://www.inclusive.org.br/arquivos/2085 .Acesso 11 nov de 2020.

FERENHOF, H. A.; FERNANDES, R. F. Desmistificando a revisão de literatura como base para redação científica: Método SFF demystifying the literature review as basis for scientific writing: SSF method. Revista ACB, v. 21, n. 3, p. 550–563, 2016.

FERRAZ, Luane. O parto quando não se vê: audiodescrição e a legitimidade das mães deficientes visuais. 2020. Disponível em: https://www.retruco.com.br/post/o-parto-quando-não-se-vê-audiodescrição-e-a-legitimidade-de-mães-deficientes-visuais . Acesso em 11 nov. 2020.

GICHANE, M. W. et al. “They must understand we are people”: Pregnancy and maternity service use among signing Deaf women in Cape Town. Disability and Health Journal, v. 10, n. 3, p. 434–439, 2017.

HALL, J. et al. Dignity and respect during pregnancy and childbirth: A survey of the experience of disabled women. BMC Pregnancy and Childbirth, v. 18, n. 1, 13 ago. 2018.

HENRIQUE, A. J. et al. Understanding childbirth pain in Brazilian women: A qualitativedescriptive study. Women and Birth, n. 2019, 2020.

HORNER-JOHNSON, W. et al. Pregnancy among US women: differences by presence, type, and complexity of disability. American Journal of Obstetrics and Gynecology, v. 214, n. 4, p. 529.e1-529.e9, 2016.

HORNER-JOHNSON, W. et al. Time trends in births and cesarean deliveries among women with disabilities. Disability and Health Journal, v. 10, n. 3, p. 376–381, 1 jul. 2017.

IEZZONI, L. I. et al. Recommendations about Pregnancy from Women with Mobility Disability to Their Peers. Women’s Health Issues, v. 27, n. 1, p. 75–82, 1 jan. 2017.

KÖNIG-BACHMANN, M.; ZENZMAIER, C.; SCHILDBERGER, B. Health professionals’ views on maternity care for women with physical disabilities: A qualitative study. BMC Health Services Research, v. 19, n. 1, 6 ago. 2019.

LIMA, Daiana Silva. Necessidades de cuidado na gestação, parto e nascimento: o olhar da mulher cadeirante. Rio de Janeiro, 2014. Dissertação (Mestrado em Enfermagem) - Universidade Federal do Estado do Rio de Janeiro.

LONG-BELLIL, L. et al. Experiences and unmet needs of women with physical disabilities for pain relief during labor and delivery. Disability and Health Journal, v. 10, n. 3, p. 440–444, 2017.

LONG-BELLIL, L. et al. The Impact of Physical Disability on Pregnancy and Childbirth. Journal of Women’s Health, v. 26, n. 8, p. 878–885, 1 ago. 2017.

MALOUF, R. et al. “We both just wanted to be normal parents”: A qualitative study of the experience of maternity care for women with learning disability. BMJ Open, v. 7, n. 3, 1 mar. 2017.

MAZURKIEWICZ, B.; STEFANIAK, M.; DMOCH-GAJZLERSKA, E. Perinatal care needs and expectations of women with low vision or total blindness in Warsaw, Poland. Disability and Health Journal, v. 11, n. 4, p. 618–623, 1 out. 2018.

MCGARRY, A.; STENFERT KROESE, B.; COX, R. How Do Women with an Intellectual Disability Experience the Support of a Doula During Their Pregnancy, Childbirth and After the Birth of Their Child? Journal of Applied Research in Intellectual Disabilities, v. 29, n. 1, p. 21–33, 1 jan. 2016.

MITRA, M. et al. Access to and Satisfaction with Prenatal Care among Pregnant Women with Physical Disabilities: Findings from a National Survey. Journal of Women’s Health, v. 26, n. 12, p. 1356–1363, 1 dez. 2017.

MITRA, M. et al. Pregnancy among women with physical disabilities: Unmet needs and recommendations on navigating pregnancy. Disability and Health Journal, v. 9, n. 3, p. 457–463, 2016.

NGUYEN, T. V. et al. “Nothing suitable for us”: experiences of women with physical disabilities in accessing maternal healthcare services in Northern Vietnam. Disability and Rehabilitation, 2020.

ORGANIZAÇÃO MUNDIAL DA SAÚDE (ONU). Relatório mundial sobre a deficiência. Governo do Estado de São Paulo, 2011. Disponível em: http://apps.who.int/iris/bitstream/handle/10665/70670/WHO_NMH_VIP_11.01_por.pdf;jsessionid=AEE261879960A7F944D2D4773161EB46?sequence=9 . Acesso em: 11 nov. 2020.

POTVIN, L. A.; BROWN, H. K.; COBIGO, V. Social support received by women with intellectual and developmental disabilities during pregnancy and childbirth: An exploratory qualitative study. Midwifery, v. 37, p. 57–64, 1 jun. 2016.

ROGERS, C. et al. Perinatal issues for women with high functioning autism spectrum disorder. Women and Birth, v. 30, n. 2, p. e89–e95, 1 abr. 2017.

ROYAL COLLEGE OF NURSING. Pregnancy and Disability: RCN guidance for midwives and nurses. London. Royal College of Nursing, 2007.

SANTOS, Livia Fajin de Mello dos. Gestação sobre rodas: assistência de saúde à mulher cadeirante durante o pré-natal, parto e nascimento. Rio de Janeiro, 2011. Dissertação (Mestrado em Enfermagem) - Escola de Enfermagem Anna Nery, Universidade Federal do Rio de Janeiro.

SCHILDBERGER, B.; ZENZMAIER, C.; KÖNIG-BACHMANN, M. Experiences of Austrian mothers with mobility or sensory impairments during pregnancy, childbirth and the puerperium: A qualitative study. BMC Pregnancy and Childbirth, v. 17, n. 1, 26 jun. 2017.

SILVA, C. N. da. Ergonomia aplicada na qualificação da ambiência do espaço de nascer. In Revista Sustinere, v. 6, issue 1, p. 150–174, 2018.

SMELTZER, S. C. et al. Labor, delivery, and anesthesia experiences of women with physical disability. Birth, v. 44, n. 4, p. 315–324, 1 dez. 2017.

SMELTZER, S. C. et al. Obstetric clinicians’ experiences and educational preparation for caring for pregnant women with physical disabilities: A qualitative study. Disability and Health Journal, v. 11, n. 1, p. 8–13, 2018.

SMELTZER, S. C. et al. Perinatal Experiences of Women With Physical Disabilities and Their Recommendations for Clinicians. Journal of Obstetric, Gynecologic & Neonatal Nursing, v. 45, n. 6, p. 781–789, 2016.

TOSTES, Natalia Almeida; SEIDL, Eliane Maria Fleury. Expectativas de gestantes sobre o parto e suas percepções acerca da preparação para o parto. Temas psicol., Ribeirão Preto , v. 24, n. 2, p. 681-693, jun. 2016 .

WOMEN HUMAN RIGHTS. Women and Girls with Disabilities. Disponível em: https://www.hrw.org/legacy/women/disabled.html Acessado em 23/11/2020.

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Published

2024-09-12

How to Cite

COLIN STELZNER, Mariana; CINELLI, Milton José. Disabled pregnant women: overview of pre-delivery care available in Brazil and worldwide. Human Factors in Design, Florianópolis, v. 13, n. 25, p. 003–016, 2024. DOI: 10.5965/2316796313252024003. Disponível em: https://periodicos.udesc.br/index.php/hfd/article/view/20558. Acesso em: 27 sep. 2024.

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Vol. 13 No. 25 (2024): Human Factors in Design

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