Sage Journals: Discover world-class research

Abstract

Research focusing on self-determination and individuals with deafblindness (DB) is limited, with self-determination often having a narrow focus for this population. The present phenomenological study explored the self-determination, from their parents’ perspective, of young adults with congenital DB and co-occurring disabilities, with a reflection on both early childhood and current experiences. Eight parents of young adults, aged 18–29 with congenital DB and co-occurring disabilities, were interviewed. The researchers analyzed verbatim transcripts using Moustakas’ modified van Kaam method of thematic analysis, with seven major themes identified from the interview data. Themes included impact of sensory impairments, importance of communication, accommodations and adaptations that facilitated independence during the early years as well as adaptations and accommodations contributing to independence as young adults, helpful therapies, parental flexibility and honoring children’s preferences, and continued supports that foster self-determination.

Keywords

Congenital deafblindness co-occurring disabilities independence parent perspectives self-determination

Get full access to this article

View all access options for this article.

References

Alsaeed

Mansouri

M. C.

Shogren

K. A.

Raley

S. K.

Kurth

J. A.

Leatherman

E. M.

Turner

E. L.

(2023). A systematic review of interventions to promote self-determination for students with extensive support needs. Research and Practice for Persons with Severe Disabilities, 48(1), 3–24. https://doi.org/10.1177/154079692

Anderson

Eppard

(1998). Van Kaam’s method revisited. Qualitative Health Researcher, 8(3), 399–403. https://doi.org/10.1177/1049732398008003

Brock

M. E.

Schaefer

J. M.

Seaman

R. L.

(2020). Self-determination and agency for all: Supporting students with severe disabilities. Theory Into Practice, 59(2), 162–171. https://doi.org/10.1080/00405841.2019.1702450

Bruce

S. M.

(2005). The impact of congenital deafblindness on the struggle to symbolism. International Journal of Disability, Development, and Education, 52(3), 233–251. https://doi.org/10.1080/10349120500252882

Bruce

S. M.

Zatta

M. C.

Gavin

Stelzer

(2016). Socialization and self- determination in different-age dyads of students who are deafblind. Journal of Visual Impairment & Blindness, 110(3), 149–161. https://doi.org/10.1177/0145482X1611000302

Cmar

J. L.

Markoski

(2019). Promoting self-determination for students with visual impairments: A review of the literature. Journal of Visual Impairment & Blindness, 113(2), 100–113. https://doi.org/10.1177/0145482X19839796

Foster

E. A.

Silliman-French

Grenier

(2020). Parents’ perceptions of constraints impacting the development of walking in children with CHARGE syndrome. Research and Practice for Persons with Severe Disabilities, 45(3), 196–211. https://doi.org/10.1177/1540796920927656

Haakma

Janssen

Minnaert

(2016). Understanding the relationship between teacher behavior and motivation in students with acquired deafblindness. American Annals of the Deaf, 161(3), 314–326. https://doi.org/10.1353/aad.2016.0024

Haakma

Janssen

Minnaert

(2017a). Intervening to improve teachers’ need-supportive behaviour using self-determination theory: Its effects on teachers and on the motivation of students with deafblindness. International Journal of Disability, Development and Education, 64(3), 310–327. https://doi.org/10.1080/1034912X.2016.1213376

10.

Haakma

Janssen

Minnaert

(2017b). The influence of need-supportive teacher behavior on the motivation of students with congenital deafblindness. Journal of Visual Impairment & Blindness, 111(3), 247–260. https://doi.org/10.1177/0145482X1711100305

11.

Horn

Parks

(2019). Inclusive special education for young learners with severe and multiple disabilities. In Obiakor

F. E.

Bakken

J. P.

(Eds.), Special education for young learners with disabilities: Advances in special education (Vol. 34; pp. 119–137). Emerald Publishing. https://doi.org/10.1108/S0270-401320190000034008

12.

Intini

Garrino

Conti

Dimonte

Borraccino

(2022). Deaf-blindness through the voices and experiences of parents and educators. Journal of Deaf Studies and Deaf Education, 27(4), 373–384. https://doi.org/10.1093/deafed/enac014

13.

Jaiswal

Aldersey

Wittich

Mirza

Finlayson

(2018). Participation experiences of people with deafblindness or dual sensory loss: A scoping review of global deafblind literature. PLOS ONE, 13(9), Article e0203772. https://doi.org/10.1371/journal.pone.0203772

14.

Janssen

M. J.

Riksen-Walraven

J. M.

van Dijk

J. P. M.

Huisman

Ruijssenaars

W. A. J. J. M

. (2011). Fostering harmonious interactions in a boy with congenital deaf-blindness: A single-case study. Journal of Visual Impairment & Blindness, 105(9), 560–572. https://doi.org/10.1177/0145482X1110500907

15.

Kuld

P. B.

Frielink

Zijlmans

Schuengel

Embregts

P. J. C. M

. (2023). Promoting self-determination of persons with severe or profound intellectual disabilities: A systematic review and meta-analysis. Journal of Intellectual Disability Research, 67(7), 589–629. https://doi.org/10.1111/jir.13036

16.

Lieberman

L. J.

Kirk

T. N.

Haegele

J. A.

(2018). Physical education and transition planning experiences relating to recreation among adults who are deafblind: A recall analysis. Journal of Visual Impairment & Blindness, 112(1), 73–86. https://doi.org/10.1177/0145482X1811200107

17.

Mar

Sall

(1994). Programmatic approach to use of technology in communication instruction for children with dual sensory impairments. Augmentative and Alternative Communication, 10(3), 138–150. https://doi.org/10.1080/07434619412331276850

18.

Martens

M. A. W.

Janssen

M. J.

Ruijssenaars

W. A. J. J. M.

Huisman

Riksen-Walraven

J. M.

(2014). Applying the Intervention Model for Fostering Affective Involvement with persons who are congenitally deafblind: An effect study. Journal of Visual Impairment & Blindness, 108(5), 399–413. https://doi.org/10.1177/0145482X1410800505

19.

Martens

M. A. W.

Janssen

M. J.

Ruijssenaars

W. A. J. J. M.

Huisman

Riksen-Walraven

J. M.

(2017). Fostering emotion expression and affective involvement with communication partners in people with congenital deafblindness and intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 30(5), 872–884. https://doi.org/10.1111/jar.12279

20.

McKittrick

L. L.

(2022). The benefits of teaching self-determination skills to very young students with sensory loss. https://www.laneofinquiry.org/research/the-benefits-of-teaching-self-determination-skills-to-very-young-students-with-sensory-loss

21.

Meral

B. F.

Wehmeyer

M. L.

Palmer

S. B.

Ruh

A. B.

Yilmaz

(2023). Parenting styles and practices in enhancing self-determination of children with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 128(4), 282–301. https://doi.org/10.1352/1944-7558-128.4.282

22.

Morgan

Bixler

McNamara

(2002). Self-determination for children and young adults who are deaf-blind [NTAC Briefing Paper]. https://www.nationaldb.org/media/doc/self-determination.pdf

23.

Moustakas

(1994). Phenomenological research methods. Sage. https://doi.org/10.4135/9781412995658

24.

National Center on Deafblindness. (2023). 2022 national deafblind child count report. https://ncdb-childcount-2022.netlify.app

25.

Preisler

(2005). Development of communication in deafblind children. Scandinavian Journal of Disability Research, 7(1), 41–62. https://doi.org/10.1080/15017410510032145

26.

Qian

Shogren

Odejimi

O. A.

Little

(2022). Differences in self-determination across disability categories: Findings from National Longitudinal Transition Study 2012. Journal of Disability Policy Studies, 32(4), 245–256. https://doi.org/10.1177/1044207320964396

27.

Rødbroe

Janssen

(2006). Congenital deafblindness and the core principles of intervention (Vol. 1). Danish Resource Centre on Congenital Deafblindness (VCDBF).

28.

Shogren

K. A.

Turnbull

A. P.

(2006). Promoting self-determination in young children with disabilities: The critical role of families. Infants and Young Children, 19(4), 338–352. https://doi.org/10.1097/00001163-200610000-00006

29.

Skarsaune

S. N.

Hanisch

H. M.

(2023). Holding and professional care: On self-determination for persons with profound intellectual and multiple disabilities. Research and Practice for Persons with Severe Disabilities, 48(1), 25–40. https://doi.org/10.1177/15407969231153579

30.

Sutter

Demchak

Grumstrup

Forsyth

Grattan

(2020). Research and journal publications in the field of deafblindness: What designs and literature inform our practices? Educational Research: Theory and Practice, 31(3), 18–35. http://www.nrmera.org/wp-content/uploads/2020/11/2-Sutter-et-al-Research-and-Journal-Publications.pdf

31.

Wehmeyer

M. L.

Palmer

S. B.

(2000). Promoting the acquisition and development of self-determination in young children with disabilities. Early Education and Development, 11(4), 465–481. https://doi.org/10.1207/s15566935eed1104_6

32.

H. Y.

Chu

S. Y.

(2012). Self-determination of young children with special needs from culturally and linguistically diverse backgrounds. Preventing School Failure: Alternative Education for Children and Youth, 56(3), 149–156. https://doi.org/10.1080/1045988X.2011.619221

Parental experiences in fostering self-determination for children with congenital deafblindness and co-occurring disabilities

Abstract

Keywords

Get full access to this article

References