A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi, Pakistan

Yousafzai, Aisha K.; Farrukh, Zia; Khan, Khurram J.

doi:10.3109/09638288.2010.520811

Cited by 18 publications

(15 citation statements)

References 18 publications

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“…It is clear that the mesosystem (the immediate family as well as other caregivers) and the exosystem (community workers and professional structures) are crucial for supporting families to nurture and encourage their young children with VI. Carers however, need to feel empowered to be able to support their children with disabilities (Yousafzai et al ). To do this requires basic resources (food security and shelter) and positive mental health.…”

Section: Discussionmentioning

confidence: 99%

‘Maybe I will give some help…. maybe not to help the eyes but different help’: an analysis of care and support of children with visual impairment in community settings in Malawi

Gladstone

McLinden

Douglas

et al. 2017

Child

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BackgroundVisual impairment in children is common in low and middle‐income settings. Whilst visual impairment (VI) can impact on the development of children, many reach full potential with appropriate early intervention programmes. Although there is increased emphasis on early child development globally, it is not yet clear how to provide specific programmes for children with VI in low and middle‐income settings. This study aims to identify facilitators and barriers to the provision of a developmental stimulation programme for children with VI in rural and urban Malawi.MethodsWe undertook 6 focus groups, 10 home observations and 20 in‐depth interviews with carers of children with VI under 6 years in urban and rural Southern Malawi. We utilised topic guides relating to care, play, communication and feeding. Qualitative data were subject to thematic analysis that included placing themes within Bronfenbrenner's ecological framework. We established authenticity of themes through feedback from participants.ResultsWe identified themes within Bronfenbrenner's framework at five levels: (1) blindness acting as a barrier to stimulation and communication, health and complex needs all affecting the individual child; (2) understanding of VI, ability to be responsive at the microsystem level of the carer; (3) support from other carers at microsystem level within a mesosystem; (4) support from other professionals (knowledge of, identification and management of children with VI, responsibilities and gender roles, environmental safety and prejudice, stigma and child protection all at the level of the exosystem.DiscussionThis study has revealed the requirements needed in order to produce meaningful and appropriate programmes to support nutrition, care and early stimulation for children with VI in this and similar African settings. This includes supporting carers to understand their child's developmental needs, how to better communicate with, feed and stimulate their child; offering advice sensitive to carers' responsibilities and professional training to better support carers and challenge community stigma.

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Section: Discussionmentioning

confidence: 99%

‘Maybe I will give some help…. maybe not to help the eyes but different help’: an analysis of care and support of children with visual impairment in community settings in Malawi

Gladstone

McLinden

Douglas

et al. 2017

Child

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“…Seventeen studies were found that explored the impact of caring for CWD on caregivers (table 2). 64–80 A common set of themes were reported in qualitative studies, which highlight the need for interventions to raise awareness on childhood disability, reduce social stigma, build support networks, and support mothers who were often taking the greater caregiving responsbility 64 66 74 80. In all settings, families reported inadequate services and resources.…”

Section: Interventions For Cwd: Impact On Children and Families And Imentioning

confidence: 99%

Moving beyond prevalence studies: screening and interventions for children with disabilities in low-income and middle-income countries

Yousafzai

Lynch

Gladstone

2014

Archives of Disease in Childhood

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Research understanding the lives of children with disabilities in low-income and middle-income countries has predominantly focused on prevalence studies with little progress on evidence-based service development. At the same time, global attention in child health has shifted from child survival strategies to those that bring child survival and development together. This review examines whether intervention research can be better aligned with current theoretical constructs of disability and international guidelines that advocate for the realisation of rights for children with disabilities and inclusive early childhood development.

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“…(14) Empowering caregivers through increased knowledge and communication about their child's condition might increase con dence in childcare and help to battle misconceptions and stigma regarding their child. (14,25) The lack of knowledge regarding CM may be attributed to a lack of education surrounding the illness. Unfortunately, healthcare workers have described their lack of time or expertise to explain details about the child's condition to caregivers.…”

Section: Resultsmentioning

confidence: 99%

“We Can’t Handle Things We don’t Know About”: Perceived Neurorehabilitation Needs and Challenges for Malawian Paediatric Cerebral Malaria Survivors

Boubour

Mboma

et al. 2020

Preprint

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Background: We sought to identify perceptions of neurorehabilitation needs and challenges for paediatric cerebral malaria (CM) survivors post-hospital discharge at Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi. Methods: An exploratory approach was used to qualitatively investigate current available neurorehabilitation services; investigate the needs of caregivers, CM survivors, providers, and the community; and identify challenges and methods to accessing neurorehabilitation services. Data were collected through semi-structured in-depth interviews (IDIs) and focus group discussions (FGDs).Results: Eighteen data-gathering sessions were conducted with 38 total participants, including 3 FGDs with 23 primary caregivers, 11 IDIs with healthcare workers at QECH, and 4 IDIs with community-based rehabilitation workers (CRWs). FGDs revealed that caregivers lack important knowledge about CM and fear recurrence of CM in their children. Post-CM children and families experience substantial stigma and sociocultural barriers to integrating into their community and accessing neurorehabilitative care. At a community-level, rehabilitation infrastructure, including trained staff, equipment, and programmes, is extremely limited. Rehabilitation services are inequitably accessible, and community-based rehabilitation remains largely unavailable.Conclusions: There is an urgent need to establish further training of rehabilitation personnel at all levels and to build accessible rehabilitation infrastructure in Malawi for post-CM patients. Additional work is required to expand this study across multiple regions for a holistic understanding of neurorehabilitation needs.

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A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi, Pakistan

Cited by 18 publications

References 18 publications

‘Maybe I will give some help…. maybe not to help the eyes but different help’: an analysis of care and support of children with visual impairment in community settings in Malawi

‘Maybe I will give some help…. maybe not to help the eyes but different help’: an analysis of care and support of children with visual impairment in community settings in Malawi

Moving beyond prevalence studies: screening and interventions for children with disabilities in low-income and middle-income countries

“We Can’t Handle Things We don’t Know About”: Perceived Neurorehabilitation Needs and Challenges for Malawian Paediatric Cerebral Malaria Survivors

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