‘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

Hennie Boeije; Chantal Leemrijse; Ellen Zonneveld; Femke van Schelven

doi:10.1111/jar.13060

‘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

Hennie Boeije, Chantal Leemrijse, Ellen Zonneveld, Femke van Schelven

Research output: Contribution to Journal › Article › Academic › peer-review

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.

Original language	English
Pages (from-to)	310-319
Journal	Journal of Applied Research in Intellectual Disabilities
Volume	36
Issue number	2
DOIs	https://doi.org/10.1111/jar.13060
Publication status	Published - 1 Mar 2023
Externally published	Yes

Funding

The first branch of the study on which this article is based was funded by the Dutch Ministry of Health, Welfare and Sport as part of the Program Full Life (Volwaardig leven) (Grant 201865006.025.008). The second and third branch were funded by ZonMw, the Netherlands Organization for Health Research and Development as part of the Program COVID‐19 (Grant 10430022010008). The funders had no role in the design, execution and writing of the study.

Funders	Funder number
ZonMw	10430022010008
Ministerie van Volksgezondheid, Welzijn en Sport	201865006.025.008

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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.",

author = "Hennie Boeije and Chantal Leemrijse and Ellen Zonneveld and {van Schelven}, Femke",

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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. / Boeije, Hennie; Leemrijse, Chantal; Zonneveld, Ellen et al.
In: Journal of Applied Research in Intellectual Disabilities, Vol. 36, No. 2, 01.03.2023, p. 310-319.

Research output: Contribution to Journal › Article › Academic › peer-review

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AU - Boeije, Hennie

AU - Leemrijse, Chantal

AU - Zonneveld, Ellen

AU - van Schelven, Femke

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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

Abstract

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