Caregiver-centred empowerment for families raising autistic children: A qualitative case study from Argentina / Zsófia SZLAMKA in Autism, 28-11 (November 2024)  

Public ISBD [article]  inAutism > 28-11 (November 2024) . - p.2768 - 2778 Titre : Caregiver-centred empowerment for families raising autistic children: A qualitative case study from Argentina Type de document : Texte imprimé et/ou numérique Auteurs : Zsófia SZLAMKA, Auteur ; Cukier SEBASTIÁN, Auteur ; Charlotte HANLON, Auteur ; Rosa A. HOEKSTRA, Auteur Article en page(s) : p.2768 - 2778 Langues : Anglais (eng) Mots-clés : advocacy  Argentina  autism spectrum disorder  developmental disabilities  empowerment Index. décimale : PER Périodiques Résumé : 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. Lay abstract Caregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations' representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families. En ligne : https://dx.doi.org/10.1177/13623613241238254 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=537 [article] Caregiver-centred empowerment for families raising autistic children: A qualitative case study from Argentina [Texte imprimé et/ou numérique] / Zsófia SZLAMKA, Auteur ; Cukier SEBASTIÁN, Auteur ; Charlotte HANLON, Auteur ; Rosa A. HOEKSTRA, Auteur . - p.2768 - 2778. Langues : Anglais (eng) in Autism > 28-11 (November 2024) . - p.2768 - 2778 Mots-clés : advocacy  Argentina  autism spectrum disorder  developmental disabilities  empowerment Index. décimale : PER Périodiques Résumé : 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. Lay abstract Caregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations' representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families. En ligne : https://dx.doi.org/10.1177/13623613241238254 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=537

Non-specialist delivery of the WHO Caregiver Skills Training Programme for children with developmental disabilities: Stakeholder perspectives about acceptability and feasibility in rural Ethiopia / Mersha KINFE ; Kamrun Nahar KOLY ; Rehana ABDURAHMAN ; Fikirte GIRMA ; Charlotte HANLON ; Petrus J. DE VRIES ; Rosa A. HOEKSTRA in Autism, 28-1 (January 2024)  

Public ISBD [article]  inAutism > 28-1 (January 2024) . - p.95?106 Titre : Non-specialist delivery of the WHO Caregiver Skills Training Programme for children with developmental disabilities: Stakeholder perspectives about acceptability and feasibility in rural Ethiopia Type de document : Texte imprimé et/ou numérique Auteurs : Mersha KINFE, Auteur ; Kamrun Nahar KOLY, Auteur ; Rehana ABDURAHMAN, Auteur ; Fikirte GIRMA, Auteur ; Charlotte HANLON, Auteur ; Petrus J. DE VRIES, Auteur ; Rosa A. HOEKSTRA, Auteur Article en page(s) : p.95?106 Mots-clés : caregivers  developmental disabilities  non-specialist facilitators  World Health Organization caregiver skills training Index. décimale : PER Périodiques Résumé : Autism and other developmental disabilities are common in low- and middle-income countries. The World Health Organization developed the caregiver skills training programme to address the needs of families having children with developmental disabilities globally. This study explored the acceptability and feasibility of the caregiver skills training programme facilitated by non-specialists in rural Ethiopia, where contextual factors such as poverty, stigma and low literacy may affect training delivery. In-depth interviews were conducted with caregivers (n?=?19) and four focus groups with non-specialist facilitators (n?=?8) in two rural pilot tests of the caregiver skills training programme. Results suggested that participants experienced the caregiver skills training programme as acceptable and relevant for their context but suggested some modifications to improve the programme. Caregivers? accounts showed that facilitation by non-specialists was acceptable; facilitators emphasised the importance of supervision throughout the programme. Participants indicated that the home visit and group training modalities were acceptable and feasible. Facilitators indicated that some caregiver skills training programme topics were difficult to explain to caregivers; the concept of formalised play between caregiver and child was particularly foreign to caregivers. Lack of available toys made it difficult to practise some of the caregiver skills programme training exercises. These findings may have relevance to non-specialist delivery of the caregiver skills programme training and other parent-mediated interventions in low-resource contexts. Lay abstract Children with developmental disabilities including autism who live in low- and middle-income countries have very limited access to care and intervention. The World Health Organization initiated the caregiver skills training programme to support families with children with developmental disabilities. In Ethiopia, contextual factors such as poverty, low literacy and stigma may affect the success of the programme. In this study, we aimed to find out if the caregiver skills training programme is feasible to deliver in rural Ethiopia and acceptable to caregivers and programme facilitators. We trained non-specialist providers to facilitate the programme. Caregivers and non-specialist facilitators were asked about their experiences in interviews and group discussions. Caregivers found the programme relevant to their lives and reported benefits of participation. Facilitators highlighted the skills they had acquired but also emphasised the importance of support from supervisors during the programme. They described that some caregiver skills training programme topics were difficult to teach caregivers. In particular, the idea of play between caregiver and child was unfamiliar to many caregivers. Lack of available toys made it difficult to practise some of the caregiver skills training programme exercises. Participants indicated that the home visits and group training programme components of the caregiver skills training were acceptable and feasible, but there were some practical barriers, such as transportation issues and lack of time for homework practice. These findings may have importance to non-specialist delivery of the caregiver skills training programme in other low-income countries. En ligne : https://dx.doi.org/10.1177/13623613231162155 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519 [article] Non-specialist delivery of the WHO Caregiver Skills Training Programme for children with developmental disabilities: Stakeholder perspectives about acceptability and feasibility in rural Ethiopia [Texte imprimé et/ou numérique] / Mersha KINFE, Auteur ; Kamrun Nahar KOLY, Auteur ; Rehana ABDURAHMAN, Auteur ; Fikirte GIRMA, Auteur ; Charlotte HANLON, Auteur ; Petrus J. DE VRIES, Auteur ; Rosa A. HOEKSTRA, Auteur . - p.95?106. in Autism > 28-1 (January 2024) . - p.95?106 Mots-clés : caregivers  developmental disabilities  non-specialist facilitators  World Health Organization caregiver skills training Index. décimale : PER Périodiques Résumé : Autism and other developmental disabilities are common in low- and middle-income countries. The World Health Organization developed the caregiver skills training programme to address the needs of families having children with developmental disabilities globally. This study explored the acceptability and feasibility of the caregiver skills training programme facilitated by non-specialists in rural Ethiopia, where contextual factors such as poverty, stigma and low literacy may affect training delivery. In-depth interviews were conducted with caregivers (n?=?19) and four focus groups with non-specialist facilitators (n?=?8) in two rural pilot tests of the caregiver skills training programme. Results suggested that participants experienced the caregiver skills training programme as acceptable and relevant for their context but suggested some modifications to improve the programme. Caregivers? accounts showed that facilitation by non-specialists was acceptable; facilitators emphasised the importance of supervision throughout the programme. Participants indicated that the home visit and group training modalities were acceptable and feasible. Facilitators indicated that some caregiver skills training programme topics were difficult to explain to caregivers; the concept of formalised play between caregiver and child was particularly foreign to caregivers. Lack of available toys made it difficult to practise some of the caregiver skills programme training exercises. These findings may have relevance to non-specialist delivery of the caregiver skills programme training and other parent-mediated interventions in low-resource contexts. Lay abstract Children with developmental disabilities including autism who live in low- and middle-income countries have very limited access to care and intervention. The World Health Organization initiated the caregiver skills training programme to support families with children with developmental disabilities. In Ethiopia, contextual factors such as poverty, low literacy and stigma may affect the success of the programme. In this study, we aimed to find out if the caregiver skills training programme is feasible to deliver in rural Ethiopia and acceptable to caregivers and programme facilitators. We trained non-specialist providers to facilitate the programme. Caregivers and non-specialist facilitators were asked about their experiences in interviews and group discussions. Caregivers found the programme relevant to their lives and reported benefits of participation. Facilitators highlighted the skills they had acquired but also emphasised the importance of support from supervisors during the programme. They described that some caregiver skills training programme topics were difficult to teach caregivers. In particular, the idea of play between caregiver and child was unfamiliar to many caregivers. Lack of available toys made it difficult to practise some of the caregiver skills training programme exercises. Participants indicated that the home visits and group training programme components of the caregiver skills training were acceptable and feasible, but there were some practical barriers, such as transportation issues and lack of time for homework practice. These findings may have importance to non-specialist delivery of the caregiver skills training programme in other low-income countries. En ligne : https://dx.doi.org/10.1177/13623613231162155 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=519

The experiences of parents raising children with developmental disabilities in Ethiopia / Bethlehem TEKOLA in Autism, 27-2 (February 2023)  

Public ISBD [article]  inAutism > 27-2 (February 2023) . - p.539-551 Titre : The experiences of parents raising children with developmental disabilities in Ethiopia Type de document : Texte imprimé et/ou numérique Auteurs : Bethlehem TEKOLA, Auteur ; Mersha KINFE, Auteur ; Fikirte GIRMA BAYOUH, Auteur ; Charlotte HANLON, Auteur ; Rosa A. HOEKSTRA, Auteur Article en page(s) : p.539-551 Langues : Anglais (eng) Mots-clés : children  developmental disabilities  Ethiopia  parents  qualitative Index. décimale : PER Périodiques Résumé : The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. Parents’ lived experiences can provide insights into local conceptualizations of developmental disabilities, challenges children and their families face and their needs. This study explores the experiences of parents (14 mothers and 4 fathers) raising children with developmental disabilities in urban and rural Ethiopia using in-depth interviews. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple and intersecting struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed. En ligne : http://dx.doi.org/10.1177/13623613221105085 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493 [article] The experiences of parents raising children with developmental disabilities in Ethiopia [Texte imprimé et/ou numérique] / Bethlehem TEKOLA, Auteur ; Mersha KINFE, Auteur ; Fikirte GIRMA BAYOUH, Auteur ; Charlotte HANLON, Auteur ; Rosa A. HOEKSTRA, Auteur . - p.539-551. Langues : Anglais (eng) in Autism > 27-2 (February 2023) . - p.539-551 Mots-clés : children  developmental disabilities  Ethiopia  parents  qualitative Index. décimale : PER Périodiques Résumé : The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. Parents’ lived experiences can provide insights into local conceptualizations of developmental disabilities, challenges children and their families face and their needs. This study explores the experiences of parents (14 mothers and 4 fathers) raising children with developmental disabilities in urban and rural Ethiopia using in-depth interviews. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple and intersecting struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed. En ligne : http://dx.doi.org/10.1177/13623613221105085 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=493

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