Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study

被引：2

作者：

Kuld, P. B. ^{[1
,3
]}

Frielink, N. ^{[1
]}

Schuengel, C. ^{[2
]}

Embregts, P. J. C. M. ^{[1
]}

机构：

[1] Tilburg Univ, Tilburg Sch Social & Behav Sci, Dept Tranzo, Tilburg, Netherlands

[2] Vrije Univ, Dept Clin Child & Family Studies, Amsterdam, Netherlands

[3] Tilburg Univ, Acad Werkplaats, Levenmet Verstandelijke Beperking, Box 90153, NL-5000 LE Tilburg, Netherlands

来源：

JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES | 2024年 / 37卷 / 04期

关键词：

concept mapping study; healthcare professionals; relatives; self-determination; severe or profound intellectual and multiple disabilities; ADULTS; QUALITY;

D O I：

10.1111/jar.13267

中图分类号：

G44 [教育心理学];

学科分类号：

0402 ; 040202 ;

摘要：

BackgroundThis study aimed to identify perspectives of relatives and healthcare professionals regarding self-determination support for people with severe or profound intellectual and multiple disabilities, highlighting agreements and differences in their viewpoints.MethodFollowing a concept mapping study, online focus group meetings yielded statements on self-determination support from relatives (residential facilities: n = 6, family homes: n = 7) and healthcare professionals (residential facilities: n = 9, family home: n = 5). Participants clustered and rated statements, resulting in four concept maps interpreted by experts (N = 6).ResultsThe 285 statements were categorised into 5-7 clusters per map, revealing key strategies for self-determination support: communication and choice making (facilitated by aids), sensitivity, familiarity, and collaboration among involved parties.ConclusionEach group placed different emphasis on these strategies, highlighting importance of continuous support in their implementation. Future research should prioritise practical implementations of these strategies to enhance self-determination.

引用

页数：15

共 52 条

[1]

Boat TF, 2015, MENTAL DISORDERS AND DISABILITIES AMONG LOW-INCOME CHILDREN, P1

[2] Perceptions of staff and family of the quality of life of people with severe to profound intellectual disability [J].

de Geus-Neelen, Karin C. J. M. ;

van Oorsouw, Wietske M. W. J. ;

Hendriks, Lex A. H. C. ;

Embregts, Petri J. C. M. .

JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY, 2019, 44 (01) :42-50

[3] Family Role in the Development of Self-Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review [J].

Dean, Evan E. ;

Kirby, Anne, V ;

Hagiwara, Mayumi ;

Shogren, Karrie A. ;

Ersan, Deniz Tekin ;

Brown, Stephanie .

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES, 2021, 59 (04) :315-334

[4]

Deci E. L., 1985, Intrinsic motivation and self-determination in human behavior, DOI [10.1007/978-1-4899-2271-7, DOI 10.1007/978-1-4899-2271-7]

[5] Using an interdisciplinary approach to training to develop the quality of communication with adults with profound learning disabilities by care staff [J].

Dobson, S ;

Upadhyaya, S ;

Stanley, B .

INTERNATIONAL JOURNAL OF LANGUAGE & COMMUNICATION DISORDERS, 2002, 37 (01) :41-57

[6]

Embregts P.J.C.M., 2023, Int. Rev. Res. Dev. Disabil, V65, P43, DOI [10.1016/bs.irrdd.2023.08.003, DOI 10.1016/BS.IRRDD.2023.08.003]

[7] Restraint interventions in people with moderate to profound intellectual disabilities: Perspectives of support staff and family members [J].

Embregts, Petri J. C. M. ;

Negenman, Annemarieke ;

Habraken, Jolanda M. ;

de Boer, Marike E. ;

Frederiks, Brenda J. M. ;

Hertogh, Cees M. P. M. .

JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, 2019, 32 (01) :172-183

[8] Community Living, Intellectual Disability and Extensive Support Needs: A Rights-Based Approach to Assessment and Intervention [J].

Esteban, Laura ;

Navas, Patricia ;

Verdugo, Miguel Angel ;

Arias, Victor B. .

INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH, 2021, 18 (06) :1-19

[9] Autonomy Support, Need Satisfaction, and Motivation for Support Among Adults With Intellectual Disability: Testing a Self-Determination Theory Model [J].

Frielink, Noud ;

Schuengel, Carlo ;

Embregts, Petri J. C. M. .

AJIDD-AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES, 2018, 123 (01) :33-49

[10]

Griffiths C, 2017, J INTELLECT DISABILI, V21, P103, DOI 10.1177/1744629516644380

← 1 2 3 4 5 6 →