Caregiver-centred empowerment for families raising autistic children: a qualitative case study from Argentina

Szlamka, Zsofia ORCID: 0000-0003-1677-0811, Cukier, Sebastián, Hanlon, Charlotte and Hoekstra, Rosa A. (2024) Caregiver-centred empowerment for families raising autistic children: a qualitative case study from Argentina. Autism, 28 (11). 2768 - 2778. ISSN 1362-3613

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Abstract

Autistic children and their caregivers in Argentina often lack access to information, resources and evidence-based interventions. Caregiver empowerment may help support families to uphold their child’s rights and access suitable education and support. This study aimed to examine the perceptions on empowerment of caregivers of autistic children in Argentina. This was a phenomenological, qualitative study. We conducted 32 semi-structured individual interviews remotely. Participants included caregivers, health service providers, non-governmental organisation representatives, special education teachers and policy representatives. Data were analysed thematically. We developed three main themes: Caregiver agency: from intuitive coping strategies to entrepreneurship; ‘I had to cut down on therapy’: Economic instability and inequality affecting service access; and Equipping caregivers to be empowered. Both caregivers and professionals talked about the contribution of socio-economic inequalities to caregivers’ sense of disempowerment. Caregivers identified coping strategies and discussed their experiences with advocacy. They expressed that in-person and online support groups have an empowering effect. Based on participant views, strategies supporting caregiver empowerment may involve: interventions are co-designed by professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.

Item Type:	Article
Official URL:	https://journals.sagepub.com/home/AUT
Additional Information:	© 2024 The Authors
Divisions:	Care Policy and Evaluation Centre
Subjects:	H Social Sciences > HQ The family. Marriage. Woman H Social Sciences
Date Deposited:	04 Mar 2024 10:33
Last Modified:	15 Nov 2024 03:51
URI:	http://eprints.lse.ac.uk/id/eprint/122149

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