A standardised practice of language and understanding: When deaf parents and their babies meet paediatric nurses in Norwegian health centres for routine postnatal consultations

Abstract

Deaf patients mostly experience unequal and inaccessible health services and bad health encounters with health professionals, both with and without interpreters present. This study provides insight into the perspectives on languages and modalities that emerge when (hearing) health professionals meet deaf parents with their babies in health centres, even with a sign language interpreter present. The study uncovers that deaf signing parents encounter a frame of “normate” that influences how their lived experiences and their signed language are perceived by the health professional. The empirical material comprises four video recordings from consultations, each involving a sign language interpreter, supported by recordings of interviews with deaf women after their routine postnatal consultations. Thematic analysis was applied to scrutinise the empirical material from actual consultations and interviews, this was followed by further analysis and discussion with perspectives from crip theory and crip linguistic lenses. The most significant finding is that spoken language has hegemony; in contrast, signed languages and deaf experiences are poorly supported, or not at all. The health professionals lack knowledge about how to meet, support and encourage deaf parents, their babies, and their preferred language. The lack of knowledge leads to sign language, and being deaf in the family not being understood, overlooked, neglected and poorly supported. Implications for practice may be that health education programmes need to implement an expanded understanding of language.

Keywords

Able-bodied / Crip theory / Crip linguistics / Sign language / Normate / Equality

CRediT authorship contribution statement

Marita Løkken: Writing-original draft, Project administration, Methodology, Investigation, Formal analysis, Conceptualization.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Data availability

The data that has been used is confidential.

Appendix A. Supplementary data

Supplementary data associated with this article can be found in the online version at doi:10.1016/j.laheal.2024.07.003.

References

[1] Act on Patient and Users Right, (1999). Lov om pasient- og brukerrettigheter (pasient- og brukerrettighetsloven) [The Norwegian Act on Patient and Users Right (patient- and user rights act]. Retrived from 〈https://lovdata.no/dokument/NL/lov/1999-07-02-63?q=pasientrettighetsloven〉.AccessedFebruary23,2024.

[2] Act relating to equality and prohibition against discrimination (2017). Lov om likestilling og forbud mot diskriminering (likestillings- og diskrimineringsloven) [The Norwegian Act on equality and prohibition of discrimination (equality and discrimination act). (LOV-2017-06-16-51). Act on equality and prohibition of discrimination in Norway, retrived from: https://lovdata.no/dokument/NLE/lov/2017-06-16-51.AccessedApril29,2024.

[3] Adigun O. T., Akinrinoye O., & Obilor H. N. (2021). Including the excluded in antenatal care: A systematic review of concerns for d/deaf pregnant women. Behavioral Sciences, 11 (5), 67. https://doi.org/10.3390/bs11050067

[4] Adigun O. T., & Mngomezulu T. P. (2020). They Forget I ’ m Deaf ’ : Exploring the Experience and Perception of Deaf Pregnant Women Attending Antenatal Clinics/Care (Article) Annals of Global Health, 86 (1), 96. https://doi.org/10.5334/aogh.2942.

[5] Bishop M., & Hicks S. L. (2008). Hearing, mother father deaf: hearing people in deaf families. Washington DC: Gallaudet University Press.

[6] Boegarde, B. v d, & Lange R. d (2014). Healthcare Accesibility and the Role of Sign Language Interpreters. In B. a. M., & Eds.), Investigations in Healthcare Interpreting (pp. 326-350). Washington DC: Gallaudet University Press.

[7] Braun V., & Clarke V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3 (2), 77-101. https://doi.org/10.1191/1478088706qp063oa

[8] Breivik J.-K. (2000). Døve-funksjonshemmede eller kulturell minoritet? [Deaf people-disabled or cultural minority?]. In Romøren, T.-I. (Ed.), Usynlighetskappen. Levekår for funksjonshemmede [The invisibility cloak. Living conditions for people with disabilities]. Oslo: Akribe Forlag.

[9] Breivik J.-K. (2007). Døv identitet i endring: lokale liv-globale bevegelser [Changing deaf identity: local lives, global movements]. Oslo: Universitetsforlaget.

[10] Brother M. (1983). CODA. Introductory issue.

[11] Brueggemann B. J. (1997). On (Almost) Passing. College English, 59 (6), 647-660. https://doi.org/10.2307/378278

[12] Costa A. D., Vogt S. E., Ruas, E. D. G., Holzmann A. P. F., & da Silva,P. L. N. (2018). Welcome and listen to the silence: nursing care from the perspective of deaf woman during pregnancy, childbirth and postpartum. Revista De Pesquisa-Cuidado E Fundamental Online, 10 (1), 123-129. https://doi.org/10.9789/2175-5361.2018.v10i1.123-129

[13] De Clerck G. A. M. (2017). Deaf Epistemologies, Identity, and Learning: A Comparative Perspective. Washington DC: Gallaudet University Press.

[14] De Meulder M. (2017). The influence of deaf people ’ s dual category status on sign language planning: the British Sign Language (Scotland) Act (2015). Current Issues in Language Planning, 18 (2), 215-232. https://doi.org/10.1080/14664208.2016.1248139

[15] De Meulder M., & Haualand H. (2021). Sign language interpreting services: A quick fix for inclusion? Translation and Interpreting, 16 (1), 19-40. https://doi.org/10.1075/tis.18008.dem

[16] De Meulder M., & Murray J. J. (2017). Buttering their bread on both sides?: The recognition of sign languages and the aspirations of deaf communities. Language Problems and Language Planning, 41 (2), 136-158. https://doi.org/10.1075/lplp.41.2.04dem

[17] Directorate of Health. (2014). Nasjonal Faglig retningslinje for barselomsorgen [National professional guideline for maternity care]. (IS-2057). ThenationalprofessionalguidelineformaternitycareinNorway,retrievedfrom〈http://www.helsedirektoratet.no/publikasjoner〉.AccessedFebruary19,2024.

[18] Direcorate of Health (2023). Helsestasjonsprogrammet 0-5 år [ Health centre programme 0-5 years]. The national health centre programme in Norway, retrived from 〈https://www.helsedirektoratet.no/retningslinjer/helsestasjons-og-skolehelsetjenesten/dokumenter-helsestasjons-og-skolehelsetjenesten/Helsestasjonsprogrammet-0-5.pdf/_/attachment/inline/0e915096-a9ff-4afb-9dc8-a78d70335603:213884cf3ea80ee975e5e31c4b8d24f1dc34d0b4/Helsestasjonsprogrammet%200-5%20%C3%A5r.pdf〉.AccessedJanuary12,2024.

[19] Friedner M. (2016). Understanding and Not-Understanding. What Do Epistemologies and Ontologies Do in Deaf Worlds?? Sign language studies, 16 (2), 184-203. 〈 http://www.jstor.org/stable/26191026〉.

[20] Garland-Thomson R. (2017). Extraordinary bodies: figuring physical disability in American culture and literature (Twentieth anniversary edition. ed.). Columbia University Press.

[21] Gichane M. W., Heap M., Fontes M., & London L. (2017). They must understand we are people": Pregnancy and maternity service use among signing Deaf women in Cape Town. Disability and Health Journal, 10 (3), 434-439. https://doi.org/10.1016/j.dhjo.2017.03.016

[22] Goodwin C. (1995). Co-constructing meaning in conversations with an aphasic man. Research on Language and Social Interaction, 28 (3), 233-260.

[23] Goodwyn S. W., Acredolo L. P., & Brown C. A. (2000). Impact on symbolic gesturing on early language development. Journal of Nonverbal Behavior, 24 (2), 81. https://doi.org/10.1023/a:1006653828895

[24] Grech S., & Soldatic K. (2015). Disability and colonialism: (dis)encounters and anxious intersectionalities. Social Identities, 21 (1), 1-5. https://doi.org/10.1080/13504630.2014.995394

[25] Green M. (2014). The Nature of Signs: Nepal’s Deaf Society, Local Sign, and the Production of Communicative Sociality. University of California-Berkeley.

[26] Grue L. (2016). Normalitet [Normality]. Bergen: Fagbokforlaget.

[27] Halvorsen R.P. (2020). Få øye på tegn: innføring i norsk tegnspråk [Spot the signs. Introduction to Norwegian Sign Language]. Bergen: Fagbokforlaget.

[28] Haualand H.. (2008). Sound and belonging: What is a community? In Bauman H.D.(Ed.) Open Your Eyes-Deaf Studies Talking (pp. 111-126).

[29] Helsenorge (2023). Infant healthcare programme, age 0-5 years. The Directorate of e-health. Retrived from 〈https://www.helsenorge.no/en/help-services-in-the-municipalities/infant-healthcare-programme-age-0-5-years/〉.AccessedJanuary10,2023.

[30] Henner J., & Robinson O. (2023). Unsettling Languages, Unruly Bodyminds: A Crip Linguistics Manifesto. Journal of Critical Study of Communication and Disability, 1 (1), 7-37. https://doi.org/10.48516/jcscd_2023vol1iss1.4

[31] Interpretation Act. (2021). Lov om offentlige organers ansvar for bruk av tolk mv. (tolkeloven) [The Norwegian Act on public organizations’ responsibility for the use of interpreters (interpretation act]. (LOV-2021-06-11-79). TheinterpretationactinNorway,retrivedfrom〈https://lovdata.no/dokument/NL/lov/2021-06-11-79〉.AccessedFebruary10,2024.

[32] James T. G., Panko T., Smith L. D., Helm, K. V. T., Katz G. R., Caballero M. E., Cooley M. M., Mitra M., & McKee M. M. (2023). Healthcare communication access among deaf and hard-of-hearing people during pregnancy. Patient Education and Counseling, 112, Article 107743. https://doi.org/10.1016/j.pec.2023.107743

[33] Johannessen A., Christoffersen L., and Tufte P.A. (2021). Introduksjon til samfunnsvitenskapelig metode [Introduction to social science methodology]. (6th edition). Oslo: Abstrakt forlag.

[34] Kelsall J. (1992). She can lip-read, she’ll be all right: improving maternity care for the deaf and hearing-impaired. Midwifery, 8 (4), 178-183. https://doi.org/10.1016/s0266-6138(05)80004-x

[35] Kendall F.E. (2012). Understanding white privilege:Creating pathways to authentic relationships across race, second edition. Understanding White Privilege: Creating Pathways to Authentic Relationships Across Race, Second Edition, 1-218. https://doi.org/10.4324/9780203114162.

[36] Kermit P. (2009). Deaf or deaf? Questioning alleged antinomies in the bioethical discourses on cochlear implantation and suggesting an alternative approach to d/Deafness [Article]. Scandinavian Journal of Disability Research, 11 (2), 159-174. https://doi.org/10.1080/15017410902830744

[37] Kusters A., & De Meulder M. (2019). Language portraits: Investigating embodied multilingual and multimodal repertoires. Forum, Qualitative Social Research, 20 ( 3). 〈https://doi.org/10.17169/fqs-20.3.3239〉.

[38] Language Act (2022). Lov om språk (språklova) [The Norwegian Language Act (Language Act)]. (LOV-2021-05-21-42). ThelanguageactinNorway,retrivedfromhttps://lovdata.no/dokument/NL/lov/2021-05-21-42/%C2%A77#%C2%A77.AccessedFebruary24,2024.

[39] Lid I. M. (2022). Ableisme på norsk: om diskriminering på grunnlag av funksjonsnedsettelse. [Ableism in Norwegian: About discrimination on the basis of disability]. Nytt norsk tidsskrift, 39 (3), 231-241. https://doi.org/10.18261/nnt.39.3.6

[40] Livingston J. (2006). Insights from an African History of Disability. Radical History Review, 2006, 111-126. https://doi.org/10.1215/01636545-2006-94-111

[41] Luton M., Allan H. T., & Kaur H. (2022). Deaf women’s experiences of maternity and primary care: An integrative review (Article) Midwifery, 104, Article 103190. https://doi.org/10.1016/j.midw.2021.103190.

[42] Major, G., & Napier J. (2019). "I’m there sometimes as a just in case". Examining role fluidity in healthcare interpreting. In M. Ji, M. Taibi, & Eds.), Multicultural Health Translation, Interpreting and Communication. Routledge.

[43] McRuer R. (2006). Crip Theory: Cultural Signs of Queerness and Disability. New York University Press.

[44] Mery Karlsson M., & Rydström J. (2023). Crip theory: a useful tool for social analysis. NORA: Nordic Journal of Women’s Studies, ahead-of-print(ahead-of-print), 1-16. https://doi.org/10.1080/08038740.2023.2179108

[45] Mitchell R. E., & Karchmer M. A. (2004). When parents are deaf versus hard of hearing: patterns of sign use and school placement of deaf and hard-of-hearing children. Journal of Deaf Studies and Deaf Education, 9 (2), 133-152. https://doi.org/10.1093/deafed/enh017

[46] Mueller V., & Acosta A. (2015). Infants’ use of baby sign to extract unfamiliar words from the speech stream. Early Child Development and Care, 185 (6). https://doi.org/10.1080/03004430.2014.970184

[47] O’Connell N. (2023). Problematising the Problem: Exploring How Hearing Privilege Fosters Employment Inequality for Deaf People. International Journal of Disability and Social Justice, 3 (2), 71-90. https://doi.org/10.13169/intljofdissocjus.3.2.0071

[48] Panko T. L., Cuculick J., Albert S., Smith L. D., Cooley M. M., Herschel M., Mitra M., & McKee M. (2023). Experiences of pregnancy and perinatal healthcare access of women who are deaf: a qualitative study. BJOG, 130 (5), 514-521. https://doi.org/10.1111/1471-0528.17300

[49] Perniss P. (2018). Why we should study multimodal language, 1109-1109 Frontiers in Psychology, 9. https://doi.org/10.3389/fpsyg.2018.01109.

[50] Preston P. (1998). Mother Father Deaf: Living between sound and silence. London: Harvard University Press.

[51] Robinson O. (2023). Sign for Crip in Crip Linguistics. In: Not An Angry Deaf Person. 〈https://notanangrydeafperson.medium.com/sign-for-crip-in-crip-linguistics-e0b578abe934〉.AccessedSeptember20th,2023.

[52] Sandahl C. (2003). Queering the Crip or Cripping the Queer?: Intersections of Queer and Crip Identies in Solo Autobiographical Performance. Journal of Lesbian and Gay Studies, 9 (1), 25-56. 〈 https://muse.jhu.edu/pub/4/article/40804〉.

[53] Schalk S. (2013). Coming to Claim Crip: Disidentification with/in Disability Studies. Disability Studies Quarterly, 33. https://doi.org/10.18061/dsq.v33i2.3705

[54] Solem I. (2015). Hørende i ørene, døv i magen. [Hearing in the ears, deaf in the stomach]. Trondheim: CODA Norge.

[55] Tøssebro J. (2010). Hva er funksjonshemming. [What is disability]. Oslo: Universitetsforlaget.

[56] WHO (2024). Deafness and hearing loss. World Health Organization. Retrived from 〈https://www.who.int/news-room/fact-sheets/detail/deafness-and-hearing-loss〉.AccessedJune17,2024.

[57] Fontes Marx M., Heap M., Gichane M. W., & London L. (2018). Validity and reliability of maternal recall of pregnancy history and service use among signing Deaf women: a cross-sectional descriptive study from South Africa. BMJ Open, 8 (12), Article e023896. https://doi.org/10.1136/bmjopen-2018-023896