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"Continuously struggling for balance": The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities.

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Title: "Continuously struggling for balance": The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities.
Authors: Geuze, Liesbeth, Goossensen, Anne, Schrevel, Samuel
Source: Journal of Intellectual & Developmental Disability. Jun2023, Vol. 48 Issue 2, p161-171. 11p. 1 Chart.
Subjects: Health services accessibility, Parents of children with disabilities, Postural balance, Interviewing, Uncertainty, Experience, Parenting, Multiple human abnormalities, Qualitative research, Phenomenology, Psychosocial factors, Disabilities, Interpersonal relations, Assistive technology, Quality of life, Research funding, Parent-child relationships, Economic aspects of diseases, Intellectual disabilities
Geographic Terms: Netherlands
Abstract: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon "parenting a child with PIMD." We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. The essential meaning of the phenomenon was understood as "continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time." The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents' challenges offers them the possibility to participate in society. Healthcare professionals should address the parents' perspectives related to the child's quality of life. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Intellectual & Developmental Disability is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: "Continuously struggling for balance": The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities.
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  Data: <searchLink fieldCode="AR" term="%22Geuze%2C+Liesbeth%22">Geuze, Liesbeth</searchLink><br /><searchLink fieldCode="AR" term="%22Goossensen%2C+Anne%22">Goossensen, Anne</searchLink><br /><searchLink fieldCode="AR" term="%22Schrevel%2C+Samuel%22">Schrevel, Samuel</searchLink>
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Intellectual+%26+Developmental+Disability%22">Journal of Intellectual & Developmental Disability</searchLink>. Jun2023, Vol. 48 Issue 2, p161-171. 11p. 1 Chart.
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  Data: <searchLink fieldCode="DE" term="%22Health+services+accessibility%22">Health services accessibility</searchLink><br /><searchLink fieldCode="DE" term="%22Parents+of+children+with+disabilities%22">Parents of children with disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Postural+balance%22">Postural balance</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Uncertainty%22">Uncertainty</searchLink><br /><searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Parenting%22">Parenting</searchLink><br /><searchLink fieldCode="DE" term="%22Multiple+human+abnormalities%22">Multiple human abnormalities</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative+research%22">Qualitative research</searchLink><br /><searchLink fieldCode="DE" term="%22Phenomenology%22">Phenomenology</searchLink><br /><searchLink fieldCode="DE" term="%22Psychosocial+factors%22">Psychosocial factors</searchLink><br /><searchLink fieldCode="DE" term="%22Disabilities%22">Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Interpersonal+relations%22">Interpersonal relations</searchLink><br /><searchLink fieldCode="DE" term="%22Assistive+technology%22">Assistive technology</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+life%22">Quality of life</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Parent-child+relationships%22">Parent-child relationships</searchLink><br /><searchLink fieldCode="DE" term="%22Economic+aspects+of+diseases%22">Economic aspects of diseases</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+disabilities%22">Intellectual disabilities</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22Netherlands%22">Netherlands</searchLink>
– Name: Abstract
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  Data: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon "parenting a child with PIMD." We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. The essential meaning of the phenomenon was understood as "continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time." The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents' challenges offers them the possibility to participate in society. Healthcare professionals should address the parents' perspectives related to the child's quality of life. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
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  Group: Ab
  Data: <i>Copyright of Journal of Intellectual & Developmental Disability is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=163489156
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.3109/13668250.2022.2073707
    Languages:
      – Code: eng
        Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 11
        StartPage: 161
    Subjects:
      – SubjectFull: Health services accessibility
        Type: general
      – SubjectFull: Parents of children with disabilities
        Type: general
      – SubjectFull: Postural balance
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Uncertainty
        Type: general
      – SubjectFull: Experience
        Type: general
      – SubjectFull: Parenting
        Type: general
      – SubjectFull: Multiple human abnormalities
        Type: general
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Phenomenology
        Type: general
      – SubjectFull: Psychosocial factors
        Type: general
      – SubjectFull: Disabilities
        Type: general
      – SubjectFull: Interpersonal relations
        Type: general
      – SubjectFull: Assistive technology
        Type: general
      – SubjectFull: Quality of life
        Type: general
      – SubjectFull: Research funding
        Type: general
      – SubjectFull: Parent-child relationships
        Type: general
      – SubjectFull: Economic aspects of diseases
        Type: general
      – SubjectFull: Intellectual disabilities
        Type: general
      – SubjectFull: Netherlands
        Type: general
    Titles:
      – TitleFull: "Continuously struggling for balance": The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities.
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Geuze, Liesbeth
      – PersonEntity:
          Name:
            NameFull: Goossensen, Anne
      – PersonEntity:
          Name:
            NameFull: Schrevel, Samuel
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 06
              Text: Jun2023
              Type: published
              Y: 2023
          Identifiers:
            – Type: issn-print
              Value: 13668250
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            – Type: volume
              Value: 48
            – Type: issue
              Value: 2
          Titles:
            – TitleFull: Journal of Intellectual & Developmental Disability
              Type: main
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