Parents' tacit knowledge of their child with profound intellectual and multiple disabilities: A qualitative study

被引：3

作者：

Kruithof, Kasper ^{[1
]}

Hoogesteyns, Maartje ^{[1
]}

Zaal-Schuller, Ilse ^{[2
,3
]}

Huisman, Sylvia ^{[2
,3
]}

Willems, Dick ^{[1
]}

Nieuwenhuijse, Appolonia ^{[1
]}

机构：

[1] Univ Amsterdam, Dept Ethics Law & Humanities, Amsterdam UMC, Amsterdam, Netherlands

[2] Amsterdam UMC, Dept Paediat, Amsterdam, Netherlands

[3] Prinsenstichting, Inst Outpatient Clin People Intellectual Disabil, Purmerend, Netherlands

来源：

JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY | 2024年

关键词：

profound intellectual and multiple disabilities; tacit knowledge; experiential knowledge; parents; caregivers; care; LIFE DECISION-MAKING; DEVELOPMENTAL-DISABILITIES; PEOPLE; ADULTS; END;

D O I：

10.3109/13668250.2024.2336084

中图分类号：

G76 [特殊教育];

学科分类号：

040109 ;

摘要：

BackgroundParents' tacit knowledge plays an important role in the care of persons with profound intellectual and multiple disabilities (PIMD). As little is known about its nature and use, we aimed to explore this parental tacit knowledge.MethodWe conducted semi-structured interviews with parents (n = 11) about their tacit knowledge of their child, based upon video recordings they made of their child's behaviour, and analysed the data thematically.ResultsParents described their tacit knowledge as the capacity to read their child's subtle signs, or to sense and "just know" their child's situation. They had developed this knowledge because of their shared history of proximity and interaction and emphasised that it was crucial in ensuring their children's needs are met.ConclusionsWe describe how parents' tacit knowledge contributes to "good care" for persons with PIMD, interpret the implications for (medical) care practice, and discuss ways to deal with its limitations.

引用

页数：10

共 50 条

[21] Time use of parents raising children with severe or profound intellectual and multiple disabilities
Luijkx, J.
van der Putten, A. A. J.
Vlaskamp, C.
[J]. CHILD CARE HEALTH AND DEVELOPMENT, 2017, 43 (04) : 518 - 526
[22] PHYSICIANS' PERCEPTIONS ON QUALITY OF LIFE OF PERSONS WITH PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES. A QUALITATIVE STUDY
Nieuwenhuijse, A. M.
[J]. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 2019, 63 (07) : 821 - 821
[23] The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study
Nieuwenhuijse, A. M.
Willems, D. L.
van Goudoever, J. B.
Olsman, E.
[J]. INTERNATIONAL JOURNAL OF DEVELOPMENTAL DISABILITIES, 2022, 68 (02) : 190 - 197
[24] ADOLESCENTS WITH PROFOUND INTELLECTUAL AND MULTIPLE DISABILITIES
Schoenmakers, H.
deVos-Dijkslag, N.
[J]. JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 2019, 63 (07) : 822 - 822
[25] Parental behavior and child interactive engagement: A longitudinal study on children with profound intellectual and multiple disabilities
van Keer, Ines
Bodner, Nadja
Ceulemans, Eva
van Leeuwen, Karla
Maes, Bea
[J]. JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, 2021, 34 (05) : 1194 - 1194
[26] "I love my sister, but sometimes I don't": A qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities
Luijkx, Jorien
van der Putten, Annette A. J.
Vlaskamp, Carla
[J]. JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY, 2016, 41 (04): : 279 - 288
[27] SIBLINGS OF ADULTS WITH PROFOUND INTELLECTUAL DISABILITIES. QUALITATIVE STUDY IN POLAND
Girynski, A.
Krus-Kubaszewska, K.
Aksamit, D.
[J]. 12TH INTERNATIONAL CONFERENCE OF EDUCATION, RESEARCH AND INNOVATION (ICERI2019), 2019, : 6071 - 6078
[28] Caring for children with profound intellectual and multiple disabilities: images and metaphors expressed by Dutch parents
Geuze, Liesbeth
Goossensen, Anne
[J]. DISABILITY & SOCIETY, 2024, 39 (07) : 1840 - 1858
[29] Staff's and Managers' Conceptions of Participation for Adults with Profound Intellectual Disabilities or Profound Intellectual and Multiple Disabilities
Talman, Lena
Wilder, Jenny
Stier, Jonas
Gustafsson, Christine
[J]. SCANDINAVIAN JOURNAL OF DISABILITY RESEARCH, 2019, 21 (01) : 78 - 88
[30] "It is important that we also remain a person ourselves": A qualitative study about the role of healthcare and social welfare services by Dutch parents caring for a child with profound intellectual and multiple disabilities at home
Geuze, Liesbeth
Schrevel, Samuel
Goossensen, Anne
[J]. SSM-QUALITATIVE RESEARCH IN HEALTH, 2023, 4

← 1 2 3 4 5 →