Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis
Background Parents’ knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge. Method We conducted an interpretative synthesis,...
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| Published in | Journal of applied research in intellectual disabilities Vol. 33; no. 6; pp. 1141 - 1150 |
|---|---|
| Main Authors | , , , |
| Format | Journal Article |
| Language | English |
| Published |
England
Wiley
01.11.2020
Wiley Subscription Services, Inc John Wiley and Sons Inc |
| Subjects | |
| Online Access | Get full text |
| ISSN | 1360-2322 1468-3148 1468-3148 |
| DOI | 10.1111/jar.12740 |
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| Abstract | Background
Parents’ knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge.
Method
We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies.
Results
Parents’ knowledge was based on their long‐lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well‐being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge.
Conclusions
Suggestions are made on how to apply and retain parents’ knowledge to improve care and support for people with PIMD. |
|---|---|
| AbstractList | Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge.BACKGROUNDParents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge.We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies.METHODWe conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies.Parents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge.RESULTSParents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge.Suggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD.CONCLUSIONSSuggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD. BackgroundParents’ knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge.MethodWe conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies.ResultsParents’ knowledge was based on their long‐lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well‐being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge.ConclusionsSuggestions are made on how to apply and retain parents’ knowledge to improve care and support for people with PIMD. Background: Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge. Method: We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies. Results: Parents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge. Conclusions: Suggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD. Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge. We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies. Parents' knowledge was based on their long-lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well-being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge. Suggestions are made on how to apply and retain parents' knowledge to improve care and support for people with PIMD. Background Parents’ knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The aim of this study was to explore the nature and transferability of this knowledge. Method We conducted an interpretative synthesis, searched PubMed, CINAHL, Philosopher's Index and PsycINFO and included fourteen studies. Results Parents’ knowledge was based on their long‐lasting and special bond with their child and described as an intuition, a gut feeling, a sixth sense and a sense of knowing. Parents applied their knowledge as experts in interpreting their child's intended communication, well‐being and pain, and as advocates opposing the more objectivist approach of medical professionals. Showing by example and passing on narratives were seen as important ways of transferring this knowledge. Conclusions Suggestions are made on how to apply and retain parents’ knowledge to improve care and support for people with PIMD. |
| Author | Olsman, Erik Kruithof, Kasper Willems, Dick Etten‐Jamaludin, Faridi |
| AuthorAffiliation | 2 Department of Medical Ethics & Health Law Leiden University Medical Center Leiden The Netherlands 1 Section of Medical Ethics Department of General Practice Amsterdam UMC Location AMC University of Amsterdam Amsterdam The Netherlands 3 Department of Spiritual Care Hoofddorp The Netherlands |
| AuthorAffiliation_xml | – name: 3 Department of Spiritual Care Hoofddorp The Netherlands – name: 2 Department of Medical Ethics & Health Law Leiden University Medical Center Leiden The Netherlands – name: 1 Section of Medical Ethics Department of General Practice Amsterdam UMC Location AMC University of Amsterdam Amsterdam The Netherlands |
| Author_xml | – sequence: 1 givenname: Kasper orcidid: 0000-0001-9528-2124 surname: Kruithof fullname: Kruithof, Kasper email: k.kruithof@amsterdamumc.nl organization: Leiden University Medical Center – sequence: 2 givenname: Dick surname: Willems fullname: Willems, Dick organization: University of Amsterdam – sequence: 3 givenname: Faridi surname: Etten‐Jamaludin fullname: Etten‐Jamaludin, Faridi organization: Department of Spiritual Care – sequence: 4 givenname: Erik surname: Olsman fullname: Olsman, Erik organization: Department of Spiritual Care |
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| Copyright | 2020 The Authors. published by John Wiley & Sons Ltd 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd. 2020. This article is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. |
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Parents’ knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their... Background: Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their... Parents' knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their child. The... BackgroundParents’ knowledge of their child with profound intellectual and multiple disabilities (PIMD) is seen as crucial in the support and care for their... |
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| SubjectTerms | ageing Caregiver Role Child Child Advocacy Children Children with disabilities Communication disability Disabled Children Expertise Family Humans Intellectual disabilities Intellectual Disability Intuition Knowledge Knowledge Level Multiple Disabilities Nonverbal communication Pain Parent Child Relationship Parent-child relations Parents Parents & parenting PIMD Professional-Family Relations Quality of life Research Reports Review Reviews Severe Disabilities Well being |
| Title | Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis |
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