Mothers’ Life-Worlds in a Developing Context when a Child has Special Needs

Hemming, Eve Caroline.; Akhurst, Jacqui

doi:10.1080/20797222.2009.11433988

Cited by 8 publications

(19 citation statements)

References 8 publications

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“…Supporting previous studies [ 25 – 27 , 33 – 35 , 77 , 78 ], and the construct of economic consequences of disease and injury framework [ 46 ], the current study’s participants incurred high healthcare costs, necessitating the cancelation of the medical treatments (e.g. stop buying supplements and brain scans) for some children with a disability.…”

Section: Discussionsupporting

confidence: 62%

The psychosocial and economic impacts on female caregivers and families caring for children with a disability in Belu District, Indonesia

Abanit¹,

Fauk

Ward

et al. 2020

PLoS ONE

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The current study aimed to understand psychosocial and economic impacts of female caregivers and families caring for children with a disability in Belu district, Indonesia. A qualitative inquiry employing one-on-one in-depth interviews was used to collect data from participants (n = 22). Data analysis was guided by a framework analysis for qualitative research. Social implications framework and the economic consequence of disease and injury framework were used to guide the conceptualisation, analysis and discussion of the findings. Findings indicated that female caregivers of children with a disability experienced significant psychosocial challenges. These included feeling frustrated, sad, angry, worried, inferior and insecure due to rejection of their children by other kids with no disability. Poor physical conditions of and negative labelling given to their children and the fear of what the future held for their children with a disability added yet another layer of psychosocial challenges experienced by these women. Separation or divorce and reduced social interaction and engagement in the community were expressed social impact loaded to these women resulting from poor acceptability of the children by their fathers, increased time spent caring and discriminatory and stigmatising attitudes against their children with a disability. The participants also experienced economic impacts, such as increased health and transport expenses, loss of jobs and productivity, and lack of savings. The findings indicate the need for programs and interventions addressing the needs of mothers or female caregivers and families with disabled children. Further studies with large number of participants covering mothers, fathers and caregivers to understand broader experiences and the need of caring for children with a disability are recommended.

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Section: Discussionsupporting

confidence: 62%

The psychosocial and economic impacts on female caregivers and families caring for children with a disability in Belu District, Indonesia

Abanit¹,

Fauk

Ward

et al. 2020

PLoS ONE

View full text Add to dashboard Cite

show abstract

“…Furthermore, poor living conditions and lack of access to services are reported to cause additional worry and concern [e.g. in South Africa (Hemming & Akhurst, ; Saloojee, Phohole, Saloojee & IJsselmuiden, ) and in Turkey (Yagmurlu et al ., )]. As Emerson states: ‘The “daily grind” of living in poverty is often a source of chronic and pervasive strain’ (: 325).…”

Section: Disability and Carementioning

confidence: 99%

“…do not positively establish this link, the physical demand of carrying a child because of transport and assistive technology shortages occurs frequently in literature from resource‐poor settings [e.g. in South Africa (Hemming & Akhurst, ; Masasa, Irwin‐Carruthers & Faure, ; Saloojee et al ., ), in Uganda (Hartley et al ., ) and in Tanzania (McNally & Mannan, )]. In other literature, the constrained supply of assistive equipment and technologies in resource‐poor areas is confirmed (Eide & Øderud, ).…”

Section: Disability and Carementioning

confidence: 99%

“…Caring for a disabled child is found to be a time‐consuming, expensive and isolating experience in addition to the physical and psychological effects [e.g. in Israel (Heiman, ), in South Africa (Hemming & Akhurst, ), in Canada (McConnell et al ., ) and in Zimbabwe (Van der Mark & Verrest, )]. Engaging with a wide range of services for medical care, assistive devices and information is often cited as a time and cost‐intensive process (Leonard et al ., ; Raina et al ., ; Yagmurlu et al ., ).…”

Section: Disability and Carementioning

confidence: 99%

“…For example, McNally and Mannan (2013) and Hartley et al (2005) make note of Tanzanian and Ugandan carers wanting to hide their child out of shame and therefore not engaging in social events themselves. Furthermore, in Uganda and South Africa, reports are made of fathers abandoning their family once a disabled child is born (Hartley et al, 2005;Hemming & Akhurst, 2009). Traditional and/or religious ideas surrounding disability (known as the moral model in disability studies; 6 Ingstad, 1995;ACPF, 2014;Yekple, 2014), which likely influence disability stigma, are amongst others reported in Kenya by Gona et al (2011), in Nicaragua by Matt (2014) and in Vietnam by Shin et al (2006).…”

Section: Sociostructural Impactmentioning

confidence: 99%

See 2 more Smart Citations

How Poverty Shapes Caring for a Disabled Child: A Narrative Literature Review

Mark

Conradie

Dedding

et al. 2017

J of Intl Development

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Despite ample research on the relationship between disability and poverty, the experiences of parents of disabled children are herein generally overlooked. We argue that an understanding of how poverty shapes caring for a disabled child is crucial for disability inclusive development. Therefore, this paper narratively reviews literature on carers of disabled children from various contexts published between 1995 and 2015. It uncovers a significant knowledge gap on the impact of poverty despite slowly emerging evidence on how political, cultural and socioeconomic exclusion stifles parents to enhance their families' wellbeing and possibly reap the benefits of development policies. Implications for future research are addressed. Copyright © 2017 John Wiley & Sons, Ltd.

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Exploring how mothers of a child with a genetic disorder experience their couple relationship in a low socio‐economic setting

Haw

Henriques

2021

Journal of Genetic Counseling

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The effect of having a child with a genetic disorder on the couple relationshipThere is an extensive body of literature on the impact that having a child with a disability or genetic disorder has on family functioning and couple relationships. However, the vast majority of these studies have been done in well-resourced Western world contexts with comparably few studies done in disadvantaged, resource-poor settings (van der Mark et al., 2017). There is consensus in the international literature that having a child with a disability increases levels of parental stress, as well as the risk of depression and anxi-

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Mothers’ Life-Worlds in a Developing Context when a Child has Special Needs

Cited by 8 publications

References 8 publications

The psychosocial and economic impacts on female caregivers and families caring for children with a disability in Belu District, Indonesia

The psychosocial and economic impacts on female caregivers and families caring for children with a disability in Belu District, Indonesia

How Poverty Shapes Caring for a Disabled Child: A Narrative Literature Review

Exploring how mothers of a child with a genetic disorder experience their couple relationship in a low socio‐economic setting

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