Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities

S.T.A.  Lahaije; Jorien Luijkx; Aly Waninge; Annette Van der Putten

doi:10.1352/1934-9556-62.2.101

Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities

S.T.A. Lahaije, Jorien Luijkx, Aly Waninge, Annette Van der Putten

Participation and Health of Persons with Intellectual and Visual Disabilities

University of Groningen, Faculty of Behavioural and Social Sciences, Inclusive and Special Needs Education

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

Abstract

Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience their family resilience, and if and how it affects their FQOL. Participants were 64 parents of a person with PIMD from 44 families. Total family resilience, as well as most subscales received positive scores, and also had a significant positive effect on FQOL. These results provide more insight into the family dynamics of families with a child with PIMD, which should inform policies, and provided services for these families.

Translated title of the contribution	Veerkracht van het gezin beïnvloedt het welzijn van gezinnen met een kind met ernstige verstandelijke en meervoudige beperkingen
Original language	English
Article number	2
Pages (from-to)	101-113
Number of pages	12
Journal	Intellectual and Developmental Disabilities
Volume	62
Issue number	2
DOIs	https://doi.org/10.1352/1934-9556-62.2.101
Publication status	Published - 28 Mar 2024

Keywords

care load
disability
family resilience
family well-being
profound intellectual and multiple disabilities

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title = "Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities",

abstract = "Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience their family resilience, and if and how it affects their FQOL. Participants were 64 parents of a person with PIMD from 44 families. Total family resilience, as well as most subscales received positive scores, and also had a significant positive effect on FQOL. These results provide more insight into the family dynamics of families with a child with PIMD, which should inform policies, and provided services for these families.",

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AU - Lahaije, S.T.A.

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AU - Waninge, Aly

AU - Van der Putten, Annette

PY - 2024/3/28

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AB - Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience their family resilience, and if and how it affects their FQOL. Participants were 64 parents of a person with PIMD from 44 families. Total family resilience, as well as most subscales received positive scores, and also had a significant positive effect on FQOL. These results provide more insight into the family dynamics of families with a child with PIMD, which should inform policies, and provided services for these families.

KW - ernstige verstandelijke en meervoudige beperkingen

KW - handicaps

KW - veerkracht van gezinnen

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KW - zorgbelasting

KW - care load

KW - disability

KW - family resilience

KW - family well-being

KW - profound intellectual and multiple disabilities

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Family Resilience Affecting Well-Being of Families With a Child With Profound Intellectual and Multiple Disabilities

Abstract

Keywords

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