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'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long‐term care planning during the COVID‐19 pandemic.

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Title: 'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long‐term care planning during the COVID‐19 pandemic.
Authors: Boeije, Hennie (AUTHOR), Leemrijse, Chantal (AUTHOR), Zonneveld, Ellen (AUTHOR), van Schelven, Femke (AUTHOR)
Source: Journal of Applied Research in Intellectual Disabilities. Mar2023, Vol. 36 Issue 2, p310-319. 10p.
Subjects: Caregiver attitudes, Medical quality control, Patient participation, Research methodology, Interviewing, Experience, Advance directives (Medical care), Qualitative research, Health literacy, Psychology of caregivers, Research funding, Intention, People with disabilities, Thematic analysis, Intellectual disabilities, Long-term health care, COVID-19 pandemic, Trust
Geographic Terms: Netherlands
Abstract: Background: Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long‐term care planning and the impact of the COVID‐19 pandemic on their intentions to engage in long‐term planning in the Netherlands. Method: Twenty‐five semi‐structured interviews with family carers of people with an intellectual disability were conducted and 169 answers to an open question were thematically analysed. Data collection took place at three timepoints during 2020 and 2021. Results: Family carers were recurrently concerned with long‐term care planning, especially with finding people to whom they can entrust their tasks. However, they perceived barriers in care planning. The COVID‐19 pandemic reinforced awareness of long‐term care planning and moved some to action. Conclusions: The perceived urge to plan by family carers has grown due to the COVID‐19 pandemic. The current study provides valuable insights for stakeholders to support them in this. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell 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: 'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long‐term care planning during the COVID‐19 pandemic.
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  Data: <searchLink fieldCode="AR" term="%22Boeije%2C+Hennie%22">Boeije, Hennie</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Leemrijse%2C+Chantal%22">Leemrijse, Chantal</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Zonneveld%2C+Ellen%22">Zonneveld, Ellen</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22van+Schelven%2C+Femke%22">van Schelven, Femke</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22">Journal of Applied Research in Intellectual Disabilities</searchLink>. Mar2023, Vol. 36 Issue 2, p310-319. 10p.
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  Data: <searchLink fieldCode="DE" term="%22Caregiver+attitudes%22">Caregiver attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+quality+control%22">Medical quality control</searchLink><br /><searchLink fieldCode="DE" term="%22Patient+participation%22">Patient participation</searchLink><br /><searchLink fieldCode="DE" term="%22Research+methodology%22">Research methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Advance+directives+%28Medical+care%29%22">Advance directives (Medical care)</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative+research%22">Qualitative research</searchLink><br /><searchLink fieldCode="DE" term="%22Health+literacy%22">Health literacy</searchLink><br /><searchLink fieldCode="DE" term="%22Psychology+of+caregivers%22">Psychology of caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Intention%22">Intention</searchLink><br /><searchLink fieldCode="DE" term="%22People+with+disabilities%22">People with disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Thematic+analysis%22">Thematic analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+disabilities%22">Intellectual disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Long-term+health+care%22">Long-term health care</searchLink><br /><searchLink fieldCode="DE" term="%22COVID-19+pandemic%22">COVID-19 pandemic</searchLink><br /><searchLink fieldCode="DE" term="%22Trust%22">Trust</searchLink>
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  Label: Abstract
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  Data: Background: Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long‐term care planning and the impact of the COVID‐19 pandemic on their intentions to engage in long‐term planning in the Netherlands. Method: Twenty‐five semi‐structured interviews with family carers of people with an intellectual disability were conducted and 169 answers to an open question were thematically analysed. Data collection took place at three timepoints during 2020 and 2021. Results: Family carers were recurrently concerned with long‐term care planning, especially with finding people to whom they can entrust their tasks. However, they perceived barriers in care planning. The COVID‐19 pandemic reinforced awareness of long‐term care planning and moved some to action. Conclusions: The perceived urge to plan by family carers has grown due to the COVID‐19 pandemic. The current study provides valuable insights for stakeholders to support them in this. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell 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=161788657
RecordInfo BibRecord:
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      – Type: doi
        Value: 10.1111/jar.13060
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      – Code: eng
        Text: English
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      Pagination:
        PageCount: 10
        StartPage: 310
    Subjects:
      – SubjectFull: Caregiver attitudes
        Type: general
      – SubjectFull: Medical quality control
        Type: general
      – SubjectFull: Patient participation
        Type: general
      – SubjectFull: Research methodology
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Experience
        Type: general
      – SubjectFull: Advance directives (Medical care)
        Type: general
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Health literacy
        Type: general
      – SubjectFull: Psychology of caregivers
        Type: general
      – SubjectFull: Research funding
        Type: general
      – SubjectFull: Intention
        Type: general
      – SubjectFull: People with disabilities
        Type: general
      – SubjectFull: Thematic analysis
        Type: general
      – SubjectFull: Intellectual disabilities
        Type: general
      – SubjectFull: Long-term health care
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      – SubjectFull: COVID-19 pandemic
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      – SubjectFull: Trust
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      – SubjectFull: Netherlands
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    Titles:
      – TitleFull: 'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long‐term care planning during the COVID‐19 pandemic.
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            NameFull: Boeije, Hennie
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            NameFull: Leemrijse, Chantal
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            NameFull: Zonneveld, Ellen
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            – D: 01
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              Text: Mar2023
              Type: published
              Y: 2023
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