Top

Open Access 17-04-2024 | Original Article

Rearing a child with a language disorder: parents experiences with speech and language therapy services in 10 countries

Authors: Sam Harding, Maja Kelić, Thora Ulfsdottir, Sofia Baena, Julie Feilberg, Kristine M. Jensen de López, Inge S. Klatte, Rena Lyons, Tina C. Mantel, Rama Novogrodsky, Isabel R. Rodriguez-Ortiz, Krisztina Zajdó

Published in: Journal of Public Health

Abstract

Aim

Collaboration between speech and language therapists and parents to help children with language disorders has always been important. The majority of published work is from the perspective of the therapist and what they think and feel parents need to help their children. However, less is known about (1) the processes parents try to access and receive services; (2) how they perceive the journey; and (3) what they think about the service provided to their child. This paper describes an exploration of how parents experience identification and access of services for their children living with language disorders.

Subjects and methods

Parents from ten countries, with a child who had received services for speech language disorder participated in semi-structured qualitative interviews. Thematic analysis was used to interpret the data.

Results

Two main themes were constructed: (1) Parental recognition of the need for services; and (2) difficulties accessing services. Parents detailed how they recognised that their children needed services and how they went about securing them. Parents recounted the process they undertook; from their initial concerns about their child’s development, the feelings this engendered, and how they tried to get support and treatment. Parents talked about the factors that made them decide they had to fight to gain access to services for their children.

Conclusions

Across countries, parents encounter similar experiences. The major obstacles identified by parents lead to the perception of delay in obtaining access to services. Identifying the services that children required was the first hurdle, even before getting a referral to them.

Available only for authorised users

Alemán-Díaz AY, Backhaus S, Siebers LL, Chukwujama O, Fenski F, Henking CN, Kaminska K, Kuttumuratova A, Weber MW (2018) Child and adolescent health in Europe: monitoring implementation of policies and provision of services. Lancet Child Adolescent Health 2(12):891–904. https://doi.org/10.1016/S2352-4642(18)30286-4CrossRefPubMed

Baker S, Harding S, Holme C, Lewis R, Seifert M, Wren Y (2022) Review of early language screening suitable for children in Wales from birth to 5 years. Available from: https://www.gov.wales/review-early-language-screening-suitable-children-wales-birth-5-years-summary-html#102502. Accessed 13 Jan 2024

Beitchman JH, Davidge KM, Kennedy JL, Atkinson L, Lee V, Shapiro S, Douglas L (2003) The serotonin transporter gene in aggressive children with and without ADHD and nonaggressive matched controls. Ann N Y Acad Sci 1008:248–251. https://doi.org/10.1196/annals.1301.025CrossRefPubMed

Berkman ND, Wallace I, Watson L, Coyne-Beasley T, Cullen K, Wood C, Lohr KN (2015) Screening for speech and language delays and disorders in children age 5 years or younger: a systematic review for the U.S. Preventive services task force. Agency for healthcare research and quality, Rockville. (Evidence Syntheses, No. 120.) https://www.ncbi.nlm.nih.gov/books/NBK305674/

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101. https://doi.org/10.1191/1478088706qp063oaCrossRef

Broomfield J, Dodd B (2011) Is speech and language therapy effective for children with primary speech and language impairment? Report of a randomized control trial. Int J Lang Commun Disord 46(6):628–640. https://doi.org/10.1111/j.1460-6984.2011.00039.xCrossRefPubMed

Chapple A, Ziebland S (2017) Methodological and practical issues in cross-national qualitative research: lessons from the literature and a comparative study of the experiences of people receiving a diagnosis of cancer. Qual Health Res 28(5):789–799. https://doi.org/10.1177/1049732317736284CrossRefPubMed

Charmaz K (2006) Constructing grounded theory: a practical guide through qualitative analysis. Sage, London

Davies KE, Marshall J, Brown LJ, Goldbart J (2017) Co-working: parents’ conception of roles in supporting their children’s speech and language development. Child Lang Teach Ther 33(2):171–185. https://doi.org/10.1177/0265659016671169CrossRef

Dollaghan CA (2007) The handbook for evidence-based practice in communication disorders. Brookes, Baltimore

Ebbels SH, McCartney E, Slonims V, Dockrell JE, Norbury CF (2019) Evidence-based pathways to intervention for children with language disorders. Int J Lang Commun Disord 54(1):3–19. https://doi.org/10.1111/1460-6984.12387CrossRefPubMed

Feldman HM, Dollaghan CA, Campbell TF, Kurs-Lasky M, Janosky JE, Paradise JL (2000) Measurement properties of the MacArthur communicative development inventories at ages one and two years. Child Dev 71(2):310–322CrossRefPubMed

Feldman HM, Dale PS, Campbell TF, Colborn DK, Kurs-Lasky M, Rockette HE, Paradise JL (2005) Concurrent and predictive validity of parent reports of child language at ages 2 and 3 years. Child Dev 76(4):856–868CrossRefPubMedPubMedCentral

Gibbard D, Roulstone S, Kandala N, Markham C, Morgan L, Harding S, Smith C (2021) A randomised controlled trial of the effectiveness of parent-based models of speech and language therapy intervention for 2 to 3 year old children with primary language delay in areas of social disadvantage. Available from https://www.academy.solent.nhs.uk/media/38404/nuffield-research-trial-main-project-output-july-2021.pdf. Accessed 6 Mar 2022

Gibbard D, Roulstone S, Kandala N, Markham C, Morgan L, Harding S, Smith C (2024) A randomised controlled trial of the effectiveness of parent based models of language intervention for 2 to 3 year old children with speech, language and communication needs (SLCN) in areas of social disadvantage. Int J Lang Commun Disordershttps://doi.org/10.1111/1460-6984.13016

Horwitt D (2010) Introduction to qualitative methods in psychology: putting theory into practice (4th ed.). Pearson, London

ICAN (Registered charity): Freeman K, Hartshorne M (2009) Speech, language and communication needs and the early years. Available from www.ican.uk.org. Accessed 6 Mar 2022

Insignia Health (2014) PAM survey. Available from https://www.insigniahealth.com/products/pam-survey. Accessed 6 Mar 2022

Johnson S and Bountziouka V (2020) For the PARCA-R Study Group. Using the PARCA-R to assess children’s cognitive and language development at two years of age. Infant 16(4):159–63

Klatte IS, Harding S, Roulstone S (2019) Speech and language therapists’ views on parents’ engagement in Parent-Child Interaction Therapy (PCIT). Int J Lang Commun Disord 54(4):553–564. https://doi.org/10.1111/1460-6984.12459CrossRefPubMed

Klatte IS, Lyons R, Davies K, Harding S, Marshall J, McKean C, Roulstone S (2020) Collaboration between parents and SLTs produces optimal outcomes for children attending speech and language therapy: gathering the evidence. Int J Lang Commun Disord 55:618–628. https://doi.org/10.1111/1460-6984.12538CrossRefPubMedPubMedCentral

Klatte IS, Ketelaar M, de Groot A, Bloemen M, Gerrits E (2023) Collaboration: how does it work according to therapists and parents of young children? A systematic review. Child Care Health Dev. https://doi.org/10.1111/cch.13167

Law J, Charlton J, Wilson P, Rush R, Gilroy V, McKean C (2023) The development and productivity of a measure for identifying low language abilities in children aged 24–36 months. BMC Pediatr 23(1):495. https://doi.org/10.1186/s12887-023-04079-xCrossRefPubMedPubMedCentral

Law J, Boyle J, Harris F, Harkness A, Nye C (1998) Screening for speech and language delay: a systematic review of the literature. Health Technol Assess 2:1–184. https://pubmed.ncbi.nlm.nih.gov/9728296/

Law J, McKean C, Murphy CA, Thordardottir E (2019) Managing children with developmental language disorder: theory and practice across Europe and beyond. Routledge, Abingdon-on-Thames

Mancilla-Martinez J, Gámez PB, Vagh SB, Lesaux NL (2016) Parent reports of young Spanish-English bilingual children’s productive vocabulary: a validation study. Lang Speech Hear Serv Sch 47:1–15. https://doi.org/10.1044/2015_LSHSS-15-0013CrossRefPubMed

Marchman VA, Martínez-Sussman C (2002) Concurrent validity of caregiver/parent report measures of language for children who are learning both English and Spanish. J Speech Lang Hear Res 45(5):983–997. https://doi.org/10.1044/1092-4388(2002/080)CrossRefPubMed

Marshall J, Harding S, Roulstone S (2017) Language development, delay and intervention - the views of parents from communities that speech and language therapy managers in England consider to be under-served. Int J Lang Commun Disord 52(4):489–500. https://doi.org/10.1111/1460-6984.12288CrossRefPubMed

McGregor KK (2020) How we fail children with developmental language disorder. Lang Speech Hear Serv Schools 51:981–992. https://doi.org/10.1044/2020_LSHSS-20-00003CrossRef

Melvin K, Meyer C, Scarinci N (2019) What does “engagement” mean in early speech pathology intervention? A qualitative systematised review. Disabil Rehabil 42(18):2665–2678. https://doi.org/10.1080/09638288.2018.1563640CrossRefPubMed

Nayeb L, Lagerberg D, Sarkadi A, Salameh EK, Eriksson M (2021) Identifying language disorder in bilingual children aged 2.5 years requires screening in both languages. Acta Paediatrica, Int J Paediat 110(1):265–272. https://doi.org/10.1111/apa.15343CrossRef

Patton MQ (2002) Qualitative research & evaluation methods (3rd ed.) Sage, London

Public Health England (2020) Early language identification measure and intervention, guidance handbook. To support children’s speech, language, and communication development as part of the 2 to 2½ year review in England. Available from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/939872/ELIM_Handbook_December-2020.pdf. Accessed 6 Mar 2022

Roulstone S, Peters TJ, Glogowska M, Enderby P (2003) A 12-month follow-up of preschool children investigating the natural history of speech and language delay. Child: Care Health Dev 29(4):245–255. https://doi.org/10.1046/j.1365-2214.2003.00339.x

Roulstone S, Marshall JE, Powell G, Goldbart J, Wren Y, Coad J, Daykin N, Powell JE, Lascelles L, Hollingworth W, Emond A, Peters TJ, Pollock JI, Fernandes C, Moultrie J, Harding SA, Morgan L, Hambly HF, Parker NK, Coad RA (2015) Evidence-based intervention for preschool children with primary speech and language impairments: child talk - an exploratory mixed-methods study. Programme Grants Appl Res 3(5). https://doi.org/10.3310/pgfar03050

Ruggero L, McCabe P, Ballard KJ, Munro N (2012) Paediatric speech-language pathology service delivery: an exploratory survey of Australian parents. Int J Speech Lang Pathol 14(4):338–350. https://doi.org/10.3109/17549507.2011.650213CrossRefPubMed

Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care: J Int Soc Qual Health Care 19(6):349–357. https://doi.org/10.1093/intqhc/mzm042CrossRef

UNICEF (1989) Convention on the rights of the child. www.unicef.org/child-rights-convention. Accessed 2 Dec 2023

World Health Organization. Regional Office for Europe (2020) Framework on early childhood development in the WHO European region. Available from https://www.euro.who.int/en/health-topics/Life-stages/child-and-adolescenthealth/publications/2020/framework-on-early-childhood-development-in-the-who-european-region-2020

Title: Rearing a child with a language disorder: parents experiences with speech and language therapy services in 10 countries
Authors: Sam Harding
Maja Kelić
Thora Ulfsdottir
Sofia Baena
Julie Feilberg
Kristine M. Jensen de López
Inge S. Klatte
Rena Lyons
Tina C. Mantel
Rama Novogrodsky
Isabel R. Rodriguez-Ortiz
Krisztina Zajdó
Publication date: 17-04-2024
Publisher: Springer Berlin Heidelberg
Published in: Journal of Public Health
Print ISSN: 2198-1833
Electronic ISSN: 1613-2238
DOI: https://doi.org/10.1007/s10389-024-02264-5

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Rearing a child with a language disorder: parents experiences with speech and language therapy services in 10 countries

Abstract

Aim

Subjects and methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Aim

Subjects and methods

Results

Conclusions

Please log in to get access to this content