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Difficulties Experienced by Women with Disabilities in the Perinatal Period and Solution Recommendations

Year 2023, Volume: 26 Issue: 3, 226 - 230, 11.09.2023
https://doi.org/10.5152/JANHS.2023.23377

Abstract

Approximately 15% of the world’s population comprises people with disabilities. It is stated that the rate of disability in all age groups is higher in women than in men. It is estimated that approximately 10% of women of reproductive age have a disability. Although there is not enough data on the proportion of women with disabilities among all women who gave birth, the evidence shows that the number of women with disabilities who become mothers is not negligible. Technological and medical developments in recent years have led to the prolongation of the life expectancy of individuals with disabilities and to lead a more active life, resulting in an increased interest in having children for women with disabilities. However, women with disabilities have more maternal and obstetric risk of complications than those without disabilities. Therefore, comprehensive perinatal care is crucial in improving maternal and fetal outcomes in women with disabilities.
Additionally, it is stated that disabled women have some difficulties accessing healthcare services in the perinatal period. Expanding sexual/reproductive health services to include women
with disabilities is also important in achieving Sustainable Development Goals. For this reason, it is recommended that plans should be made to eliminate the possible perinatal risks and difficulties experienced by disabled women of reproductive age and that nurses, who are in critical positions in perinatal care, should expand their healthcare services to include women with disabilities.

References

  • 1. Türk Dil Kurumu. Available at: https://sozluk.gov.tr/. Erişim Tarihi November 23, 2022.
  • 2. World Health Organization & World Bank. World Report on Disability 2011. Genèe: World Health Organization; 2011. Available at: https ://ap ps.wh o.int /iris /hand le/10 665/4 4575. Accessed November 23,2022.
  • 3. World Health Organization. WHO Global Disability Action Plan 2014-2021. Genèe: World Health Organization; 2015. Available at: https ://ww w.who .int/ publi catio ns/i/ item/ who-g lobal -disa bilit y-act ion-plan-2 014-2 021. Accessed November 23, 2022.
  • 4. United Nations. Disability and Development Report Realizing the Sustainable Development Goals by, for and with Persons with Disabilities. New York; 2019. Available at: https ://ww w.un.org/d evelop-ment /desa /dspd /2019 /04/u n-dis abili ty-an d-dev elopment-reportw-realizing-the-sdgs-by-for-and-with-persons-with-disabili-tie s. Accessed November 23, 2022.
  • 5. Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of disabilities and health care access by disability status and type among adults — United States, 2016. MMWR Morb Mortal Wkly Rep. 2018;67(32):882-887. [CrossRef]
  • 6. Carter A, Strnadová I, Watfern C, et al. The sexual and reproductive health and rights of young people with ıntellectual disability: a scoping review. Sex Res Soc Policy. 2022;19(1):372-390. [CrossRef]
  • 7. Ganle JK, Baatiema L, Quansah R, Danso-Appiah A. Barriers facing persons with disability in accessing sexual and reproductive health services in sub-Saharan Africa: a systematic review. PLOS ONE. 2020;15(10):e0238585. [CrossRef]
  • 8. Casebolt MT. Barriers to reproductive health services for womenwith disability in low-and middle-income countries: a review of the literature. Sex Reprod Healthc. 2020;24:100485. [CrossRef]
  • 9. Nguyen TV, King J, Edwards N, Pham CT, Dunne M. Maternal healthcare experiences of and challenges for women with physical disabilities in low and middle-ıncome countries: a review of qualitative evidence. Sex Disabil. 2019;37(2):175-201. [CrossRef]
  • 10. Bloom TL, Mosher W, Alhusen J, Lantos H, Hughes RB. Fertility desires and ıntentions among U.S. women by disability status: findings from the 2011-2013 national survey of family growth. Matern Child Health J. 2017;21(8):1606-1615. [CrossRef]
  • 11. Brown HK, Chen S, Guttmann A, et al. Rates of recognized pregnancy in women with disabilities in Ontario, Canada. Am J Obstet Gynecol. 2020;222(2):189-192. [CrossRef]
  • 12. Horner-Johnson W, Biel FM, Darney BG, Caughey AB. Time trends in births and cesarean deliveries among women with disabilities. Disabil Health J. 2017;10(3):376-381. [CrossRef]
  • 13. Brown HK, Lunsky Y, Wilton AS, Cobigo V, Vigod SN. Pregnancy in women with intellectual and developmental disabilities. J Obstet Gynaecol Can. 2016;38(1):9-16. [CrossRef]
  • 14. Brown HK, Ray JG, Chen S, Guttmann A, Havercamp SM, Parish S, Vigod SN, Tarasoff LA, Lunsky Y. Association of preexisting disability with severe maternal morbidity or mortality in Ontario, Canada. JAMA Netw Open. 2021;4(2):e2034993. [CrossRef]
  • 15. Tarasoff LA, Ravindran S, Malik H, Salaeva D, Brown HK. Maternal disability and risk for pregnancy, delivery, and postpartum complications: a systematic review and meta-analysis. Am J Obstet Gynecol. 2020;222(1):27.e1-27.e32. [CrossRef]
  • 16. Horner-Johnson W, Garg B, Darney BG, Biel FM, Caughey AB. Severe maternal morbidity and other perinatal complications among women with physical, sensory, or intellectual and developmental disabilities. Paediatr Perinat Epidemiol. 2022;36(5):759-768. [CrossRef]
  • 17. Mitra M, Akobirshoev I, Valentine A, Brown HK, Moore Simas TA. Severe maternal morbidity and maternal mortality in women with ıntellectual and developmental disabilities. Am J Prev Med. 2021; 61(6):872-881. [CrossRef]
  • 18. Gleason JL, Grewal J, Chen Z, Cernich AN, Grantz KL. Risk of adverse maternal outcomes in pregnant women with disabilities. JAMA Netw Open. 2021;4(12):e2138414. [CrossRef]
  • 19. Nishat F, Lunsky Y, Tarasoff LA, Brown HK. Continuity of primary care and prenatal care adequacy among women with disabilities in Ontario: a population-based cohort study. Disabil Health J. 2022;15(3):101322. [CrossRef]
  • 20. Ransohoff JI, Sujin Kumar P, Flynn D, Rubenstein E. Reproductive and pregnancy health care for women with intellectual and developmenttal disabilities: a scoping review. J Appl Res Intellect Disabil. 2022;35(3):655-674. [CrossRef]
  • 21. World Health Organization. WHO Recommendations on Antenatal Care for a Positive Pregnancy Experience. Genèe: World Health Organization; 2016. Available at: https ://ww w.who.int/ publi catio ns/i/item/ 9789241549 912. Accessed November 23, 2022.
  • 22. Lappeteläinen A, Sevón E, Vehkakoski T. Forbidden option or planned decision? Physically disabled women’s narratives on the choice of motherhood. Scand J Disabil Res. 2017;19(2):140-150. [CrossRef]
  • 23. Walsh-Gallagher D, Sinclair M, Mc Conkey R. The ambiguity of disabled women’s experiences of pregnancy, childbirth and motherhood: a phenomenological understanding. Midwifery. 2012;28(2):156-162. [CrossRef]
  • 24. Schildberger B, Zenzmaier C, König-Bachmann M. Experiences of Austrian mothers with mobility or sensory impairments during preg- nancy, childbirth and the puerperium: a qualitative study. BMC Pregnancy Childbirth. 2017;17(1):201. [CrossRef]
  • 25. Saeed G, Brown HK, Lunsky Y, et al. Barriers to and facilitators of effective communication in perinatal care: a qualitative study of the experiences of birthing people with sensory, intellectual, and/or developmental disabilities. BMC Pregnancy Childbirth. 2022;22(1): 364. [CrossRef]
  • 26. Heideveld-Gerritsen M, van Vulpen M, Hollander M, Oude Maatman SO, Ockhuijsen H, van den Hoogen A. Maternity care experi- ences of women with physical disabilities: a systematic review. Midwifery. 2021;96:102938. [CrossRef]
  • 27. Malouf R, Henderson J, Redshaw M. Access and quality of maternity care for disabled women during pregnancy, birth and the postnatal period in England: data from a national survey. BMJ Open. 2017;7(7):e016757. [CrossRef]
  • 28. Hall J, Hundley V, Collins B, Ireland J. Dignity and respect during pregnancy and childbirth: a survey of the experience of disabled women. BMC Pregnancy Childbirth. 2018;18(1):328. [CrossRef]
  • 29. Blair A, Cao J, Wilson A, Homer C. Access to, and experiences of, maternity care for women with physical disabilities: a scoping review. Midwifery. 2022;107:103273. [CrossRef]
  • 30. Redshaw M, Malouf R, Gao H, Gray R. Women with disability: the experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC Pregnancy Childbirth. 2013;13:174. [CrossRef]
  • 31. Smeltzer SC, Mitra M, Iezzoni LI, Long-Bellil L, Smith LD. Perinatal experiences of women with physical disabilities and their recom- mendations for clinicians. J Obstet Gynecol Neonatal Nurs. 2016;45(6):781-789. [CrossRef]
  • 32. Diamanti A, Sarantaki A, Gourounti K, Lykeridou A. Perinatal care in women with vision disorders: a systematic review. Maedica (Bucur). 2021;16(2):261-267. [CrossRef]
  • 33. Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. Physical accessibility of routine prenatal care for women with mobility disability. J Womens Health (Larchmt). 2015;24(12):1006-1012. [CrossRef]
  • 34. Ganle JK, Otupiri E, Obeng B, Edusie AK, Ankomah A, Adanu R. Challenges women with disability face in accessing and using maternal healthcare services in Ghana: a qualitative study. PLOS ONE. 2016;11(6):e0158361. [CrossRef]
  • 35. Taheri M, Takian A, Taghizadeh Z, Jafari N, Sarafraz N. Creating a positive perception of childbirth experience: systematic review and meta-analysis of prenatal and intrapartum interventions. Reprod Health. 2018;15(1):73. [CrossRef]
  • 36. Henriksen L, Grimsrud E, Schei B, Lukasse M, Bidens Study Group. Factors related to a negative birth experience- a mixed methods study. Midwifery. 2017;51:33-39. [CrossRef]
  • 37. Clements KM, Mitra M, Zhang J, Parish SL. Postpartum health care among women with ıntellectual and developmental disabilities. Am J Prev Med. 2020;59(3):437-444. [CrossRef]
  • 38. Coren E, Ramsbotham K, Gschwandtner M. Parent training interventions for parents with intellectual disability. Cochrane Database Syst Rev. 2018;7(7):CD007987. [CrossRef]

Engelli Kadınların Perinatal Dönemde Yaşadığı Güçlükler ve Çözüm Önerileri

Year 2023, Volume: 26 Issue: 3, 226 - 230, 11.09.2023
https://doi.org/10.5152/JANHS.2023.23377

Abstract

Dünya nüfusunun yaklaşık %15’ini engelli bireyler oluşturmaktadır. Her yaş grubunda engellilik oranının erkeklere kıyasla kadınlarda daha yüksek olduğu belirtilmektedir. Üreme çağındaki kadın-
ların yaklaşık %10’unun engelli olduğu tahmin edilmektedir. Doğum yapan tüm kadınlar arasında engelli kadınların oranına ilişkin yeterli veri olmamakla birlikte kanıtlar anne olan engelli kadın
sayısının ihmal edilmeyecek oranda olduğunu göstermektedir. Son yıllarda yaşanan teknolojik ve tıbbi gelişmeler engelli bireylerin yaşam süresinin uzamasına ve daha aktif bir yaşamın sürmele-
rine neden olup, engelli kadınların çocuk sahibi olmasına yönelik ilginin artmasına neden olmuştur Bununla birlikte, engelli kadınlar engelli olmayanlara göre daha fazla maternal ve obstetrik
komplikasyon riskine sahiptir. Bu nedenle engelli kadınlarda maternal ve fetal sonuçların iyileştirilmesinde kapsamlı perinatal bakımın önemi büyüktür. Buna karşın engelli kadınların perinatal
dönemde sağlık bakım hizmetlerine erişimde de birtakım güçlükler yaşadıkları belirtilmektedir. Cinsel sağlık/üreme sağlığı hizmetlerinin engelli kadınları kapsayacak şekilde genişletilmesi
Sürdürülebilir Kalkınma Hedeflerine ulaşmada da büyük önem arz etmektedir. Bu nedenle doğurgan çağdaki engelli kadınların olası perinatal risklerinin ve yaşadıkları güçlüklerin ortadan kaldırıl-
masına yönelik planlamaların yapılması, perinatal bakımda anahtar pozisyonda olan hemşirelerin sağlık bakım hizmet sunumlarını engelli kadınları kapsayacak şekilde genişletmesi önerilmektedir.

References

  • 1. Türk Dil Kurumu. Available at: https://sozluk.gov.tr/. Erişim Tarihi November 23, 2022.
  • 2. World Health Organization & World Bank. World Report on Disability 2011. Genèe: World Health Organization; 2011. Available at: https ://ap ps.wh o.int /iris /hand le/10 665/4 4575. Accessed November 23,2022.
  • 3. World Health Organization. WHO Global Disability Action Plan 2014-2021. Genèe: World Health Organization; 2015. Available at: https ://ww w.who .int/ publi catio ns/i/ item/ who-g lobal -disa bilit y-act ion-plan-2 014-2 021. Accessed November 23, 2022.
  • 4. United Nations. Disability and Development Report Realizing the Sustainable Development Goals by, for and with Persons with Disabilities. New York; 2019. Available at: https ://ww w.un.org/d evelop-ment /desa /dspd /2019 /04/u n-dis abili ty-an d-dev elopment-reportw-realizing-the-sdgs-by-for-and-with-persons-with-disabili-tie s. Accessed November 23, 2022.
  • 5. Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of disabilities and health care access by disability status and type among adults — United States, 2016. MMWR Morb Mortal Wkly Rep. 2018;67(32):882-887. [CrossRef]
  • 6. Carter A, Strnadová I, Watfern C, et al. The sexual and reproductive health and rights of young people with ıntellectual disability: a scoping review. Sex Res Soc Policy. 2022;19(1):372-390. [CrossRef]
  • 7. Ganle JK, Baatiema L, Quansah R, Danso-Appiah A. Barriers facing persons with disability in accessing sexual and reproductive health services in sub-Saharan Africa: a systematic review. PLOS ONE. 2020;15(10):e0238585. [CrossRef]
  • 8. Casebolt MT. Barriers to reproductive health services for womenwith disability in low-and middle-income countries: a review of the literature. Sex Reprod Healthc. 2020;24:100485. [CrossRef]
  • 9. Nguyen TV, King J, Edwards N, Pham CT, Dunne M. Maternal healthcare experiences of and challenges for women with physical disabilities in low and middle-ıncome countries: a review of qualitative evidence. Sex Disabil. 2019;37(2):175-201. [CrossRef]
  • 10. Bloom TL, Mosher W, Alhusen J, Lantos H, Hughes RB. Fertility desires and ıntentions among U.S. women by disability status: findings from the 2011-2013 national survey of family growth. Matern Child Health J. 2017;21(8):1606-1615. [CrossRef]
  • 11. Brown HK, Chen S, Guttmann A, et al. Rates of recognized pregnancy in women with disabilities in Ontario, Canada. Am J Obstet Gynecol. 2020;222(2):189-192. [CrossRef]
  • 12. Horner-Johnson W, Biel FM, Darney BG, Caughey AB. Time trends in births and cesarean deliveries among women with disabilities. Disabil Health J. 2017;10(3):376-381. [CrossRef]
  • 13. Brown HK, Lunsky Y, Wilton AS, Cobigo V, Vigod SN. Pregnancy in women with intellectual and developmental disabilities. J Obstet Gynaecol Can. 2016;38(1):9-16. [CrossRef]
  • 14. Brown HK, Ray JG, Chen S, Guttmann A, Havercamp SM, Parish S, Vigod SN, Tarasoff LA, Lunsky Y. Association of preexisting disability with severe maternal morbidity or mortality in Ontario, Canada. JAMA Netw Open. 2021;4(2):e2034993. [CrossRef]
  • 15. Tarasoff LA, Ravindran S, Malik H, Salaeva D, Brown HK. Maternal disability and risk for pregnancy, delivery, and postpartum complications: a systematic review and meta-analysis. Am J Obstet Gynecol. 2020;222(1):27.e1-27.e32. [CrossRef]
  • 16. Horner-Johnson W, Garg B, Darney BG, Biel FM, Caughey AB. Severe maternal morbidity and other perinatal complications among women with physical, sensory, or intellectual and developmental disabilities. Paediatr Perinat Epidemiol. 2022;36(5):759-768. [CrossRef]
  • 17. Mitra M, Akobirshoev I, Valentine A, Brown HK, Moore Simas TA. Severe maternal morbidity and maternal mortality in women with ıntellectual and developmental disabilities. Am J Prev Med. 2021; 61(6):872-881. [CrossRef]
  • 18. Gleason JL, Grewal J, Chen Z, Cernich AN, Grantz KL. Risk of adverse maternal outcomes in pregnant women with disabilities. JAMA Netw Open. 2021;4(12):e2138414. [CrossRef]
  • 19. Nishat F, Lunsky Y, Tarasoff LA, Brown HK. Continuity of primary care and prenatal care adequacy among women with disabilities in Ontario: a population-based cohort study. Disabil Health J. 2022;15(3):101322. [CrossRef]
  • 20. Ransohoff JI, Sujin Kumar P, Flynn D, Rubenstein E. Reproductive and pregnancy health care for women with intellectual and developmenttal disabilities: a scoping review. J Appl Res Intellect Disabil. 2022;35(3):655-674. [CrossRef]
  • 21. World Health Organization. WHO Recommendations on Antenatal Care for a Positive Pregnancy Experience. Genèe: World Health Organization; 2016. Available at: https ://ww w.who.int/ publi catio ns/i/item/ 9789241549 912. Accessed November 23, 2022.
  • 22. Lappeteläinen A, Sevón E, Vehkakoski T. Forbidden option or planned decision? Physically disabled women’s narratives on the choice of motherhood. Scand J Disabil Res. 2017;19(2):140-150. [CrossRef]
  • 23. Walsh-Gallagher D, Sinclair M, Mc Conkey R. The ambiguity of disabled women’s experiences of pregnancy, childbirth and motherhood: a phenomenological understanding. Midwifery. 2012;28(2):156-162. [CrossRef]
  • 24. Schildberger B, Zenzmaier C, König-Bachmann M. Experiences of Austrian mothers with mobility or sensory impairments during preg- nancy, childbirth and the puerperium: a qualitative study. BMC Pregnancy Childbirth. 2017;17(1):201. [CrossRef]
  • 25. Saeed G, Brown HK, Lunsky Y, et al. Barriers to and facilitators of effective communication in perinatal care: a qualitative study of the experiences of birthing people with sensory, intellectual, and/or developmental disabilities. BMC Pregnancy Childbirth. 2022;22(1): 364. [CrossRef]
  • 26. Heideveld-Gerritsen M, van Vulpen M, Hollander M, Oude Maatman SO, Ockhuijsen H, van den Hoogen A. Maternity care experi- ences of women with physical disabilities: a systematic review. Midwifery. 2021;96:102938. [CrossRef]
  • 27. Malouf R, Henderson J, Redshaw M. Access and quality of maternity care for disabled women during pregnancy, birth and the postnatal period in England: data from a national survey. BMJ Open. 2017;7(7):e016757. [CrossRef]
  • 28. Hall J, Hundley V, Collins B, Ireland J. Dignity and respect during pregnancy and childbirth: a survey of the experience of disabled women. BMC Pregnancy Childbirth. 2018;18(1):328. [CrossRef]
  • 29. Blair A, Cao J, Wilson A, Homer C. Access to, and experiences of, maternity care for women with physical disabilities: a scoping review. Midwifery. 2022;107:103273. [CrossRef]
  • 30. Redshaw M, Malouf R, Gao H, Gray R. Women with disability: the experience of maternity care during pregnancy, labour and birth and the postnatal period. BMC Pregnancy Childbirth. 2013;13:174. [CrossRef]
  • 31. Smeltzer SC, Mitra M, Iezzoni LI, Long-Bellil L, Smith LD. Perinatal experiences of women with physical disabilities and their recom- mendations for clinicians. J Obstet Gynecol Neonatal Nurs. 2016;45(6):781-789. [CrossRef]
  • 32. Diamanti A, Sarantaki A, Gourounti K, Lykeridou A. Perinatal care in women with vision disorders: a systematic review. Maedica (Bucur). 2021;16(2):261-267. [CrossRef]
  • 33. Iezzoni LI, Wint AJ, Smeltzer SC, Ecker JL. Physical accessibility of routine prenatal care for women with mobility disability. J Womens Health (Larchmt). 2015;24(12):1006-1012. [CrossRef]
  • 34. Ganle JK, Otupiri E, Obeng B, Edusie AK, Ankomah A, Adanu R. Challenges women with disability face in accessing and using maternal healthcare services in Ghana: a qualitative study. PLOS ONE. 2016;11(6):e0158361. [CrossRef]
  • 35. Taheri M, Takian A, Taghizadeh Z, Jafari N, Sarafraz N. Creating a positive perception of childbirth experience: systematic review and meta-analysis of prenatal and intrapartum interventions. Reprod Health. 2018;15(1):73. [CrossRef]
  • 36. Henriksen L, Grimsrud E, Schei B, Lukasse M, Bidens Study Group. Factors related to a negative birth experience- a mixed methods study. Midwifery. 2017;51:33-39. [CrossRef]
  • 37. Clements KM, Mitra M, Zhang J, Parish SL. Postpartum health care among women with ıntellectual and developmental disabilities. Am J Prev Med. 2020;59(3):437-444. [CrossRef]
  • 38. Coren E, Ramsbotham K, Gschwandtner M. Parent training interventions for parents with intellectual disability. Cochrane Database Syst Rev. 2018;7(7):CD007987. [CrossRef]
There are 38 citations in total.

Details

Primary Language Turkish
Subjects Obstetrics and Gynocology Nursing, Nursing (Other)
Journal Section Reviews
Authors

Aliye Doğan Gangal 0000-0002-7467-6455

Eda Şimşek Şahin This is me 0000-0002-1614-9569

Ayten Şentürk Erenel

Early Pub Date September 21, 2023
Publication Date September 11, 2023
Published in Issue Year 2023 Volume: 26 Issue: 3

Cite

AMA Doğan Gangal A, Şimşek Şahin E, Şentürk Erenel A. Engelli Kadınların Perinatal Dönemde Yaşadığı Güçlükler ve Çözüm Önerileri. Journal of Nursology. September 2023;26(3):226-230. doi:10.5152/JANHS.2023.23377

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