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16 - Capturing the Voice of Parents and Children

The Potential Impact for the Design and Implementation of Research and Services

from Part Three - Impact, Intervention and Equity

Published online by Cambridge University Press:  11 August 2022

James Law
Affiliation:
University of Newcastle upon Tyne
Sheena Reilly
Affiliation:
Griffith University, Queensland
Cristina McKean
Affiliation:
University of Newcastle upon Tyne
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Summary

Research agendas in health and education are largely driven by professionals, resulting in a bias against the concerns of the participants in or receivers of the research. There is growing evidence of the positive influence of public and patient involvement (PPI) in research and within the field of language development and disorders, and there is increasing involvement of parents and children in research design and implementation. In this chapter, we discuss the importance of involving parents and children with language disorders in research and the facilitators and barriers to their involvement. The views of parents and children can redress bias in our research and provide balance to our evidence base. We argue that the voices of parents and children can inform our understanding of the social dimension of language development and disorder and shape the development of outcome measures that are valued and meaningful to children and their families. We also reflect on the contradictions in the professional discourse that reflect attitudes towards parents and children. We end with a consideration of how listening to parents and children might inform the study of language development and language disorder in large cohort studies and in the development and evaluation of interventions.

Type
Chapter
Information
Language Development
Individual Differences in a Social Context
, pp. 376 - 396
Publisher: Cambridge University Press
Print publication year: 2022

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References

Akgul, E., Yazci, D., & Akman, B. (2019). Views of parents preferring to raise a bilingual child. Early Child Development and Care, 189(10), 15881601.Google Scholar
Ambridge, B. & Lieven, E.V.M. (2011). Child language acquisition: Contrasting theoretical approaches. Cambridge: Cambridge University Press.Google Scholar
Barnes, S., & Bloch, S. (2019). Why is measuring communication difficult? A critical review of current speech pathology concepts and measures. Clinical Linguistics & Phonetics, 33(3), 219236. doi:10.1080/02699206.2018.1498541CrossRefGoogle ScholarPubMed
Blackburn, S., McLachlan, S., Jowett, S., Kinghorn, P., Gill, P., Higginbottom, A., … Jinks, J. (2018). The extent, quality and impact of patient and public involvement in primary care research: A mixed methods study. BMC Research Involvement and Engagement, 4, 16.CrossRefGoogle ScholarPubMed
Boerma, T., & Blom, E. (2017). Assessment of bilingual children: What if testing both languages is not possible? Journal of Communication Disorders, 66, 6576. doi:10.1016/j.jcomdis.2017.04.001CrossRefGoogle Scholar
Boivin, A., Richards, T., Forsythe, L., Grégoire, A., L’Espérance, A., Abelson, J., & Carman, K. L. (2018). Evaluating patient and public involvement in research. British Medical Journal, 363, k5147. doi:10.1136/bmj.k5147CrossRefGoogle ScholarPubMed
Carroll, C. (2010). ‘It’s not every day that parents get a chance to talk like this’: Exploring parents’ perceptions and expectations of speech-language pathology services for children with intellectual disability. International Journal of Speech-Language Pathology, 12(4), 352361. doi:10.3109/17549500903312107Google Scholar
Carroll, C., & Sixsmith, J. (2016). Exploring the facilitation of young children with disabilities in research about their early intervention service. Child Language Teaching & Therapy, 32 (3), 313325.Google Scholar
Christensen, P. (2004). Children’s participation in ethnographic research: Issues of power and representation. Children & Society, 18(2), 165176.Google Scholar
Coad, J., & Hambly, H. (2011). Listening to children with speech, language, and communication needs through arts-based methods. In Roulstone, S. & McLeod, S. (Eds.), Listening to children and young people with speech, language and communication needs (pp. 131141). Guildford: J&R Press.Google Scholar
Connors, C., & Stalker, K. (2007). Children’s experiences of disability: Pointers to a social model of disability. Disability & Society, 22(1), 1933.Google Scholar
Davies, R., Gibson, A., & Griffiths, S. (2019). Patient and public involvement. In Dobinson, C. & Wren, Y. (Eds.), Creating practice-based evidence: A guide for SLTs, 2nd ed. Guildford: J&R Press.Google Scholar
De Chavez, A. C., Backett-Milburn, K., Parry, O., & Platt, S. (2005). Understanding and researching well-being: Its usage in different disciplines and potential for health research and health promotion. Health Education Journal, 64(1), 7087.Google Scholar
Education Endowment Foundation. (2018). Working with parents to support children’s learning: Guidance report. London: Education Endowment Foundation.Google Scholar
Evans, D., Coad, J., Cottrell, K., Dalrymple, J., Davies, R., Donald, C.Sayers, R. (2014). Public involvement in research: Assessing impact through realist evaluation. Health Services and Delivery Research, 2, 36.Google Scholar
Feeney, R., Desha, L., Ziviani, J., & Nicholson, J. (2012). Health-related quality-of-life of children with speech and language difficulties: A review of the literature. International Journal of Speech-Language Pathology, 14(1), 5972.CrossRefGoogle ScholarPubMed
Ferguson, A. (2009). The discourse of speech-language pathology. International Journal of Speech-Language Pathology, 11(2), 104112.CrossRefGoogle Scholar
Flynn, R., Walton, S., & Scott, S. D. (2019). Engaging children and families in pediatric health research: A scoping review. Research Involvement and Engagement, 5(1), 32. doi:10.1186/s40900-019-0168-9Google Scholar
Fourie, R., Crowley, N., & Oliviera, A. (2011). A qualitative exploration of therapeutic relationships from the perspective of six children receiving speech-language therapy. Topics in Language Disorders, 31(4), 310324.Google Scholar
Gallagher, A. L., Murphy, C. A., Conway, P. F., & Perry, A. (2019). Engaging multiple stakeholders to improve speech and language therapy services in schools: An appreciative inquiry-based study. BMC Health Services Research, 19(1), 226226. doi:10.1186/s12913-019-4051-zGoogle Scholar
Gallagher, A. L., Tancredi, H., & Graham, L. J. (2018). Advancing the human rights of children with communication needs in school. International Journal of Speech-Language Pathology, 20(1), 128132. doi:10.1080/17549507.2018.1395478Google Scholar
Glogowska, M. (1998). Parents’ beliefs and ideas about children’s early speech and language difficulties. International Journal of Language and Communication Disorders, 33(S), 538542.CrossRefGoogle ScholarPubMed
Golding, S., Leitão, S., & Williams, C. (2013). Speech and language development of intercountry adopted children aged 3 to 6 years: An explorative study of Australian parents’ knowledge, beliefs, and experiences. Adoption Quarterly, 16(1), 4061. doi:10.1080/10926755.2012.754811Google Scholar
Gomersall, T., Spencer, S., Basaris, H., Tsuchiya, A., Clegg, J., Sutton, A., & Dickinson, K. (2015). Measuring quality of life in children with speech and language difficulties: A systematic review of existing approaches. International Journal of Language and Communication Disorders, 50(4), 416435.Google Scholar
Goodall, J., & Montgomery, C. (2014). Parental involvement to parental engagement: A continuum. Educational Review, 66(4), 399410. doi:10.1080/00131911.2013.781576Google Scholar
Greenhalgh, T. (2016). Cultural contexts of health: The use of narrative research in the health sector. Copenhagen: WHO Regional Office for Europe (Health Evidence Network (HEN) synthesis report 49). Copenhagen: WHO. www.euro.who.int/__data/assets/pdf_file/0004/317623/HEN-synthesis-report-49.pdfGoogle Scholar
Greenhalgh, T., Snow, R., Ryan, S., Rees, S., & Salisbury, H. (2015). Six ‘biases’ against patients and carers in evidence-based medicine. BMC Medicine, 13, 200.Google Scholar
Hambly, H. (2018). A relational understanding of language impairment: children’s experiences in the context of their social worlds. In Runswick-Cole, K., Curran, T., & Liddiard, K. (Eds.), The Palgrave handbook of disabled children’s childhood studies (pp. 409423). London: Palgrave Macmillan.CrossRefGoogle Scholar
Hammer, C. S. (2011). Broadening our knowledge about diverse populations. American Journal of Speech-Language Pathology, 20(2), 7172. doi:10.1044/1058-0360(2011/ed-02)Google Scholar
Harkness, S., Super, E., Sutherland, M., Blom, U., Mavradis, J., & Axia, G. (2007). Culture and the construction of habits in daily life: Implications for the successful development of children with disabilities. Occupation, Participation and Health, 27, 335405.Google Scholar
INVOLVE. (2013). Exploring the impact of public involvement on the quality of research: examples. NIHR Guidance on co-producing a research project. Southampton: INVOLVE. www.invo.org.uk/wp-content/uploads/2019/04/Copro_Guidance_Feb19.pdfGoogle Scholar
Kelic, M., Roulstone, S., Pavicic Dokosa, K., & McKean, C. (2019). Attitudes and rules governing work with parents: An exploration of the perspectives of speech and language therapists. Poster presented at the 2019 Conference of the UK Royal College of Speech & Language Therapists, Nottingham.Google Scholar
Law, J., Roulstone, S., & Lindsay, G. (2015). Integrating external evidence of intervention effectiveness with both practice and the parent perspective: Development of ‘What Works’ for speech, language, and communication needs (SLCN). Developmental Medicine & Child Neurology, 57, 223228.Google Scholar
Lee, M., Shetgiri, R., Barina, A., Tillitski, J., & Flores, G. (2015). Raising bilingual children: A qualitative study of parental attitudes, beliefs and intended behaviours. Hispanic Journal of Behavioural Sciences, 37(4), 503521.Google Scholar
Lyons, R., O’Malley, M. P., O’Conner, P., & Monaghan, U. (2010). ‘It’s just so lovely to hear him talking’: Exploring the intervention expectations and experiences of parents. Child, Language, Teaching and Therapy, 26, 6176.Google Scholar
Lyons, R., & Roulstone, S. (2017). Labels, identity and narratives in children with primary speech and language impairments. International Journal of Speech-Language Pathology, 5, 503518. doi:10.1080/17549507.2016.1221455Google Scholar
Lyons, R., & Roulstone, S. (2018a). Listening to the voice of children with developmental speech and language disorders using narrative inquiry: Methodological considerations. Journal of Communication Disorders, 72, 1625. doi:10.1016/j.jcomdis.2018.02.006Google Scholar
Lyons, R., & Roulstone, S. (2018b). Well-being and resilience in children with speech and language disorders. Journal of Speech, Language, and Hearing Research, 61(2), 324344. doi:10.1044/2017_JSLHR-L-16-0391Google Scholar
Marjanovič‐Umek, L., Fekonja, U., Podlesek, A., & Kranjc, S. (2011). Assessing toddler language competence: Agreement of parents’ and preschool teachers’ assessments. European Early Childhood Education Research Journal, 19(1), 2143. doi:10.1080/1350293X.2011.548957CrossRefGoogle Scholar
Markham, C., & Dean, T. (2006). Parents’ and professionals’ perceptions of quality of life in children with speech and language difficulty. International Journal of Language and Communication Disorders, 41, 189212.Google Scholar
Markham, C., van Laar, D., Gibbard, D., & Dean, T. (2009). Children with speech, language and communication needs: Their perceptions of their quality of life. International Journal of Language and Communication Disorders, 44(5), 748768.Google Scholar
Marshall, J., Goldbart, J., & Phillips, J. (2007). Parents’ and speech and language therapists’ explanatory models of language development, language delay and intervention. International Journal of Language & Communication Disorders, 42(5), 533555. doi:10.1080/13682820601053753Google Scholar
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. International Journal of Language & Communication Disorders, 52(4), 489500. doi:10.1111/1460-6984.12288CrossRefGoogle ScholarPubMed
McAndrew, B., & O’Malley-Keighran, M.-P. (2017). ‘She didn’t have a word of English; we didn’t have a word of Vietnamese’: Exploring parent experiences of communication with toddlers who were adopted internationally. Journal of Communication Disorders, 68, 89102. doi:10.1016/j.jcomdis.2017.06.011Google Scholar
McCormack, J., McLeod, S., McAllister, L., & Harrison, L. (2010). My speech problem, your listening problem, and my frustration: The experience of living with childhood speech impairment. Language, Speech, and Hearing Services in Schools, 41, 379392.Google Scholar
McCurtin, A., & Clifford, A. M. (2015). What are the primary influences on treatment decisions? How does this reflect on evidence-based practice? Indications from the discipline of speech and language therapy. Journal of Evaluation in Clinical Practice, 21(6), 11781189.CrossRefGoogle ScholarPubMed
McKean, C., Mensah, F. K., Eadie, P., Bavin, E. L., Bretherton, L., Cini, E., & Reilly, S. (2015). Levers for language growth: Characteristics and predictors of language trajectories between 4 and 7 years. PLoS ONE, 10(8), e0134251. doi:10.1371/journal.pone.0134251Google Scholar
McLeod, S., Daniel, G., & Barr, J. (2013). ‘When he’s around his brothers he’s not so quiet’: The private and public worlds of school-aged children with speech sound disorder. Journal of Communication Disorders, 46, 7083.Google Scholar
McLeod, S., McCormack, J., McAllister, L., Harrison, L., & Holliday, E. (2011). Listening to 4- to 5-year old children with speech impairment using drawings, interviews and questionnaires. In Roulstone, S. & McLeod, S. (Eds.), Listening to children and young people with speech, language and communication need (pp. 179193). Guildford: J&R Publishers.Google Scholar
Merrick, R., & Roulstone, S. (2011). Children’s views of communication and speech-language pathology. International Journal of Speech-Language Pathology, 13(4), 281290.Google Scholar
Michael-Luna, S. (2013). What linguistically diverse parents know and how it can help early childhood educators: A case study of a dual language preschool community. Early Childhood Education Journal, 41(6), 447455. doi:10.1007/s10643-013-0574-9Google Scholar
Ochs, E., & Schieffelin, B. (1984). Language acquisition and socialization: Three developmental stories and their implications. In Schweder, R. A. & LeVine, R. A. (Eds.), Culture theory: Essays on mind, self, and emotion (pp. 276320). Cambridge: Cambridge University Press.Google Scholar
Ocloo, J., & Matthews, R. (2016). From tokenism to empowerment: Progressing patient and public involvement in healthcare improvement. British Medical Journal Quality and Safety, 25, 626632.Google Scholar
Owen, R., Hayett, L., & Roulstone, S. (2004). Children’s views of speech and language therapy in school: Consulting children with communication difficulties. Child Language Teaching and Therapy, 20(1), 5573.Google Scholar
Rabiee, P., Sloper, P., & Beresford, B. (2005). Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication. Health & Social Care in the Community, 13(5), 478487. doi:10.1111/j.1365-2524.2005.00578.xGoogle Scholar
Rannard, A., Lyons, C., & Glenn, S. (2004). Children with specific language impairment: Parental accounts of the early years. Journal of Child Health Care, 8(2), 165176. doi:10.1177/1367493504041875Google Scholar
Rannard, A., Lyons, C., & Glenn, S. (2005). Parent concerns and professional responses: The case of specific language impairment. British Journal of General Practice, 55(518), 710714.Google Scholar
Roulstone, S., Coad, J., Ayre, A., Hambly, H., & Lindsay, G. (2012). The preferred outcomes of children with speech, language and communication needs and their parents. London: DfE.Google Scholar
Roulstone, S., Glogowska, M., Peters, T. J., & Enderby, P. (2003). A 12 month follow-up of preschool children investigating the natural history of speech and language delay. Child: Care Health & Development, 29(4), 245255.Google Scholar
Roulstone, S., Harding, S., & Morgan, L. (2016). Exploring the involvement of children and young people with speech, language and communication needs and their families in decision-making: A research project. London: The Communication Trust. www.thecommunicationtrust.org.uk/involveGoogle Scholar
Roulstone, S., & Lindsay, G. (2012). The perspectives of children and young people who have speech, language and communication needs, and their parents. Department for Education Research Report DFR-RR247-BCRP7. www.education.gov.uk/publications/standard/publicationDetail/Page1/DFE-RR247-BCRP7Google Scholar
Roulstone, S., Marshall, J. E., Powell, G. G., Goldbart, J., Wren, Y. E., Coad, J., … Coad, R. (2015). Evidence-based intervention for preschool children with primary speech and language impairments: Child Talk – An exploratory mixed-methods study, Programme Grants for Applied Research, 3(5). www.journalslibrary.nihr.ac.uk/programmes/pgfar/RP-PG-0109-10073/#/Google Scholar
Sanger, D., Moore-Brown, B., Montgomery, J., Rezac, C., & Keller, H. (2003). Female incarcerated adolescents with language problems talk about their own communication behaviours and learning. Journal of Communication Disorders, 36, 465486.Google Scholar
Sawyer, B. E., Manz, P. H., & Martin, K. A. (2017). Supporting preschool dual language learners: Parents’ and teachers’ beliefs about language development and collaboration. Early Child Development and Care, 187(3–4), 707726.Google Scholar
Segawa, N. (2017). Beating English into kids’ heads? Parents in Uganda split over corporal punishment. Global Press Journal, 14 January. https://globalpressjournal.com/africa/uganda/beating-english-kids-heads-parents-uganda-split-corporal-punishmentGoogle Scholar
Smith, E., Manthorpe, J., Brearley, S., Ross, F., Donovan, S., Sitzia, J., & Beresford, P. (2005). User involvement in the design and undertaking of midwifery and health visiting research. Report to the National Co-ordinating Centre for NHS Service Delivery and Organisation R&D. London: HMSO.Google Scholar
Staley, K. (2009). Exploring impact: Public involvement in NHS, public health and social care research. www.invo.org.uk/wp-content/uploads/2011/11/Involve_Exploring_Impactfinal28.10.09.pdfGoogle Scholar
Sugden, E., Munro, N., Trivette, C. M., Baker, E., & Williams, A. L. (2019). Parents’ experiences of completing home practice for speech sound disorders. Journal of Early Intervention, 41(2), 159181. doi:10.1177/1053815119828409Google Scholar
Sylvestre, A., Nadeau, L., Charron, L., Larose, N., & Lepage, C. (2013). Social participation by children with developmental coordination disorder compared to their peers. Disability & Rehabilitation, 35, 18141820.CrossRefGoogle ScholarPubMed
Tancredi, H. (2019). Meeting obligations to consult students with disability: Methodological considerations and successful elements for consultation. The Australian Educational Researcher, 47(2), 201217.CrossRefGoogle Scholar
Tisdall, E. K. M., Davis, J., & Gallagher, M. (2009). Introduction. In Tisdall, E. K. M., Davis, J., & Gallagher, M. (Eds.), Researching for children and young people: Research design, methods and analysis (pp. 110). London: SAGE.Google Scholar
Tomblin, J. B., & Christiansen, M. H. (2009). Explaining developmental communication disorders. In Paul, R. (Ed.) Speech disorders (pp. 3549). San Diego, CA: Plural.Google Scholar
Tuller, L. (2015). Clinical use of parental questionnaires in multilingual contexts. In Atmon-Lotem, S., de Jong, J., & Meir, N. (Eds.), Assessing multilingual children. Disentangling Bilingualism from language impairment (pp. 301330). Bristol: Multilingual Matters.Google Scholar
United Nations. (1989). United Nations Convention on the Rights of the Child. www.unicef.org/child-rights-convention/convention-text/Google Scholar
van Kleeck, A. (1994). Potential cultural bias in training parents as conversational partners with their children who have delays in language development. American Journal of Speech-Language Pathology, 3(1), 6778.Google Scholar
Volkmer, A., Broomfield, K., & Longhurst, L. (2019). From engagement to co-production in research and clinical practice: PPI in practice. Workshop presented at the UK RCSLT conference, Nottingham, September.Google Scholar
Watts Pappas, N., McAllister, L., & McLeod, S. 2016. Parental beliefs and experiences regarding involvement in intervention for the child with speech sound disorder. Child Language Teaching and Therapy, 32(2), 223239.Google Scholar
Wessells, M. G. (2015). Bottom-up approaches to strengthening child protection systems: Placing children, families and communities at the centre. Child Abuse and Neglect, 43, 821.Google Scholar
Wickenden, M. (2010). Teenage worlds, different voices: An ethnographic study of identity and lifeworlds of disabled teenagers who use AAC. Doctoral thesis, University of Sheffield.Google Scholar
Wilson, P., Mathie, E., Keenan, J., McNeilly, E., Goodman, C., Howe, A., … Peckham, S. (2015). Research with patient and public involvement: A realist evaluation – the RAPPORT study. Health Services and Delivery Research, 3(38).Google Scholar
Wing, C., Kohnert, K., Pham, G., Codero, K. N., Ebert, K. D., Kan, P. F., & Blaiser, K. (2007). Culturally consistent treatment for late talkers. Communication Disorders Quarterly, 29(1), 2027.Google Scholar
World Health Organisation. (2001). International Classification of Functioning, Disability, and Health. Geneva: World Health Organisation.Google Scholar

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