Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study

Kasper Kruithof; Lisa IJzerman; Appolonia Nieuwenhuijse; Sylvia Huisman; Alice Schippers; Dick Willems; Erik Olsman

doi:10.3109/13668250.2021.1892261

Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study

Kasper Kruithof, Lisa IJzerman, Appolonia Nieuwenhuijse, Sylvia Huisman, Alice Schippers, Dick Willems, Erik Olsman

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

Abstract

Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings’ role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Conclusions: Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents’ and siblings’ views regarding an expected future burden.

Original language	English
Pages (from-to)	351-361
Journal	Journal of Intellectual and Developmental Disability
Volume	46
Issue number	4
DOIs	https://doi.org/10.3109/13668250.2021.1892261
Publication status	Published - 2021
Externally published	Yes

Funding

This work was supported by ZonMw (The Netherlands Organization for Health Research and Development) [grant number 845004009]. The funding body has imposed no restrictions on free access to or publication of the research data. We like to thank Sarike de Zoeten, Ilse van Driel and Bas Kleijwegt for their help and support during the data collection phase of the research. Finally, we like to thank all respondents for sharing their personal stories with us. All authors have contributed to, seen, and approved of the manuscript and agree to the order of authors as listed on the title page.

Funders	Funder number
Netherlands Organization for Health Research and Development	845004009
Sarike de Zoeten
ZonMw

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Kruithof, K., IJzerman, L., Nieuwenhuijse, A., Huisman, S., Schippers, A., Willems, D., & Olsman, E. (2021). Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study. Journal of Intellectual and Developmental Disability, 46(4), 351-361. https://doi.org/10.3109/13668250.2021.1892261

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title = "Siblings{\textquoteright} and parents{\textquoteright} perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study",

abstract = "Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings{\textquoteright} role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Conclusions: Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents{\textquoteright} and siblings{\textquoteright} views regarding an expected future burden.",

author = "Kasper Kruithof and Lisa IJzerman and Appolonia Nieuwenhuijse and Sylvia Huisman and Alice Schippers and Dick Willems and Erik Olsman",

year = "2021",

doi = "10.3109/13668250.2021.1892261",

language = "English",

volume = "46",

pages = "351--361",

journal = "Journal of Intellectual and Developmental Disability",

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}

Kruithof, K, IJzerman, L, Nieuwenhuijse, A, Huisman, S, Schippers, A, Willems, D & Olsman, E 2021, 'Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study', Journal of Intellectual and Developmental Disability, vol. 46, no. 4, pp. 351-361. https://doi.org/10.3109/13668250.2021.1892261

Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study. / Kruithof, Kasper; IJzerman, Lisa; Nieuwenhuijse, Appolonia et al.
In: Journal of Intellectual and Developmental Disability, Vol. 46, No. 4, 2021, p. 351-361.

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

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T1 - Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities

T2 - A qualitative study

AU - Kruithof, Kasper

AU - IJzerman, Lisa

AU - Nieuwenhuijse, Appolonia

AU - Huisman, Sylvia

AU - Schippers, Alice

AU - Willems, Dick

AU - Olsman, Erik

PY - 2021

Y1 - 2021

N2 - Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings’ role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Conclusions: Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents’ and siblings’ views regarding an expected future burden.

AB - Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents. Method: To explore how parents and siblings of persons with PIMD view siblings’ role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically. Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility. Despite a lack of explicit communication, expectations of parents and siblings regarding future responsibilities corresponded. However, some siblings mentioned the lack of explicit communication made them feel unprepared for the future. Conclusions: Explicit family communication may make siblings feel more prepared for the future and decrease the discrepancy between parents’ and siblings’ views regarding an expected future burden.

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JO - Journal of Intellectual and Developmental Disability

JF - Journal of Intellectual and Developmental Disability

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Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study

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