"It makes me a better person": The unique experiences of parenting multiple children who experience neurodevelopmental disability.

Mothering Multiplex families Neurodevelopmental disability Qualitative Social participation Well-being

Journal

Research in developmental disabilities
ISSN: 1873-3379
Titre abrégé: Res Dev Disabil
Pays: United States
ID NLM: 8709782

Informations de publication

Date de publication:
19 Feb 2024
Historique:
received: 07 11 2023
revised: 20 01 2024
accepted: 10 02 2024
medline: 21 2 2024
pubmed: 21 2 2024
entrez: 20 2 2024
Statut: aheadofprint

Résumé

Much research has explored how raising a child with a neurodevelopmental disability influences parents' well-being. However, little research has focused on the unique experiences of parenting multiple children with neurodevelopmental disabilities. We explored the unique experiences of parenting multiple children with neurodevelopmental disabilities with a focus on mothers' well-being and social participation. Ten mothers who parent multiple children with neurodevelopmental disabilities participated in semi-structured interviews. Interviews were analyzed using a reflexive thematic approach. Three themes were identified: 'Knowledge is power' described positive influences of enhanced disability knowledge and advocacy with each child who experienced disability. 'Shifts in wellbeing' acknowledged these mothers' exhaustion, decreased time for self-care, and invisible work, yet also increased feelings of empowerment, purpose and empathy for others. '(Dis)Connection and engagement with others' reflected struggles of balancing responsibilities, social and community participation, and experiences with isolation. Yet, mothers' also experienced enhanced disability community and family connections, and a sense of meaning and purpose. Findings highlighted challenges, and many rewarding and unique experiences of parenting multiple children with neurodevelopmental disabilities. Health, education and social service practitioners are encouraged to acknowledge parent's challenges, but also celebrate and draw on families' strengths and knowledge.

Sections du résumé

BACKGROUND BACKGROUND
Much research has explored how raising a child with a neurodevelopmental disability influences parents' well-being. However, little research has focused on the unique experiences of parenting multiple children with neurodevelopmental disabilities. We explored the unique experiences of parenting multiple children with neurodevelopmental disabilities with a focus on mothers' well-being and social participation.
METHODS METHODS
Ten mothers who parent multiple children with neurodevelopmental disabilities participated in semi-structured interviews. Interviews were analyzed using a reflexive thematic approach.
RESULTS RESULTS
Three themes were identified: 'Knowledge is power' described positive influences of enhanced disability knowledge and advocacy with each child who experienced disability. 'Shifts in wellbeing' acknowledged these mothers' exhaustion, decreased time for self-care, and invisible work, yet also increased feelings of empowerment, purpose and empathy for others. '(Dis)Connection and engagement with others' reflected struggles of balancing responsibilities, social and community participation, and experiences with isolation. Yet, mothers' also experienced enhanced disability community and family connections, and a sense of meaning and purpose.
CONCLUSIONS AND IMPLICATIONS CONCLUSIONS
Findings highlighted challenges, and many rewarding and unique experiences of parenting multiple children with neurodevelopmental disabilities. Health, education and social service practitioners are encouraged to acknowledge parent's challenges, but also celebrate and draw on families' strengths and knowledge.

Identifiants

pubmed: 38377706
pii: S0891-4222(24)00029-5
doi: 10.1016/j.ridd.2024.104697
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

104697

Informations de copyright

Copyright © 2024 Elsevier Ltd. All rights reserved.

Déclaration de conflit d'intérêts

Declaration of Competing Interest The authors have no competing interests to declare.

Auteurs

Sandy Thompson-Hodgetts (S)

Department of Occupational Therapy, University of Alberta, 2-64 Corbett Hall, Edmonton T6G 2G4, Canada. Electronic address: sandy.hodgetts@ualberta.ca.

Marcela Barahona Ortega (MB)

Department of Pediatrics, University of Alberta, 11405 87 Ave, Edmonton T6G 1C9, Canada.

Claire Anthony (C)

Department of Occupational Therapy, University of Alberta, 2-64 Corbett Hall, Edmonton T6G 2G4, Canada.

Hayley McComish (H)

Department of Occupational Therapy, University of Alberta, 2-64 Corbett Hall, Edmonton T6G 2G4, Canada.

Emily Sharp (E)

Department of Occupational Therapy, University of Alberta, 2-64 Corbett Hall, Edmonton T6G 2G4, Canada.

Classifications MeSH