The experiences of parents of children with mental disability regarding access to mental health care

Coomer, Rachel

doi:10.4314/ajpsy.v16i4.36

Cited by 11 publications

(7 citation statements)

References 78 publications

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“… 2016 ). Similar findings were seen in South Africa in families of children with mental health disabilities (Coomer 2013 ). In Kenya, mothers of children with spina bifida struggled with the financial implications of the child’s disability; most of them received some support from other parents and religious communities (Vant Veer et al .…”

Section: Introductionsupporting

confidence: 80%

Parental stress and support of parents of children with spina bifida in Uganda

Bannink

Idro

Hove

2016

AJOD

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BackgroundChildren with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.ObjectivesThe study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.MethodsA total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.ResultsParental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).ConclusionParents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

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Section: Introductionsupporting

confidence: 80%

Parental stress and support of parents of children with spina bifida in Uganda

Bannink

Idro

Hove

2016

AJOD

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“…The geographical focus of the research deserves note and highlights the disparity of research being conducted between the main island of Java and other jurisdictions in Indonesia. This finding has also been noted in reviews of research about disability from other low-and middle-income countries such as Vietnam (Ha, Whittaker, Whittaker, & Rodger, 2014) and Namibia (Coomer, 2013). Certainly, the geographic spread of Indonesia across a vast archipelago makes the dispersion of resources more difficult, and our results highlight the need for programs and research that take account geographical location, as environmental risk and poorer access to services are more acute outside of the main centers.…”

Section: Intervention Date and Sitesupporting

confidence: 83%

Interventions Supporting Development of Young Children With Disabilities at Environmental Risk in Indonesia: A Scoping Review

Kiling

Due

et al. 2018

Sage Open

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The purpose of this article is to examine the current literature addressing interventions to support the developmental process of children of early age with disabilities in Indonesia, who are threatened with significant environmental risk. To achieve that, a scoping review was conducted. The following databases were searched: PsycINFO, PubMed, Embase, CINAHL, ERIC, Social Services Abstracts, and Scopus, as well as the reference lists of all included studies. We searched 46 open access Indonesian journals and conducted hand-searches at the four main Indonesian universities. Searches were conducted of Google Scholar and the websites of Indonesian government and nongovernmental agencies to identify gray literature. These agencies were also personally contacted to identify relevant reports. Eight studies met our inclusion criteria. The existing research investigates on various interventions including two studies utilizing strategies indigenous to Indonesian. Environmental risk factors were not addressed directly by all the interventions. The eight studies targeted all areas of early childhood development. Several limitations were found in these studies' methodology, and they also used similar research designs. This review highlights the need of more rigorous and culturally relevant research to fulfill the developmental needs of young children with disabilities in Indonesia.

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“…The association between poverty and disability is well documented (Hoogeveen, 2005;Lwanga-Ntale, 2003;Singal & Muthukrishna, 2014). Most studies about families and children with disabilities in sub-Saharan Africa have hence focused on parental adaptation, stress, quality of life, financial implications and caregivers' burden (Abasiubong, Obembe, & Ekpo, 2006;Ben Thabet et al, 2013;Coomer, 2013;Greeff & Nolting, 2013;Greeff, Vansteenwegen, & Gillard, 2012;Paget, Mallewa, Chinguo, Mahebere-Chirambo, & Gladstone, 2015;van't Veer et al, 2008). Belief systems about the origin of disability have been widely studied and display a mix of biomedical causes of disability, witchcraft, the breaking of taboos, punishment of God, or God's will (Braathen & Ingstad, 2006;DeVlieger, 1998;Ingstad, 1999;Miles, 2006;Stone-MacDonald & Butera, 2014).…”

Section: Alternative Concepts Of Disability and Inclusive Educationmentioning

confidence: 99%

‘They Give Him a Chance’- Parents’ Perspectives on Disability and Inclusive Primary Education in Uganda

Bannink

Nalugya

Hove

2019

International Journal of Disability, Development and Education

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Inclusive education interventions in low-income countries are dominated by definitions and frameworks from disability studies and educational research scholars from high-income countries. Disability studies scholars have argued for valuing diverse understandings and a different discourse when studying disability and inclusion in low-income countries. In this paper, we explore the meaning of belonging and inclusion to parents of children with disabilities in central Uganda. Through case study analysis we aim to give alternative starting points for inclusive primary education programmes. We explore the themes 'missing parts', the 'ability to manage', 'belonging to a family', and 'being given a chance' as key concepts of disability and inclusion. We argue not to translate parents' descriptions into international categories and framework, but to reflect on the larger and underlying meaning of the concepts to form a more culturally embedded and relevant starting point of education for all. We propose to address the gaps of the postcolonial education system that has taken teachers' and families' away from the concept of 'obuntu bulamu', and focus interventions on re-creating this togetherness and value the strength of concepts of belonging and caring for each other.

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The experiences of parents of children with mental disability regarding access to mental health care

Cited by 11 publications

References 78 publications

Parental stress and support of parents of children with spina bifida in Uganda

Parental stress and support of parents of children with spina bifida in Uganda

Interventions Supporting Development of Young Children With Disabilities at Environmental Risk in Indonesia: A Scoping Review

‘They Give Him a Chance’- Parents’ Perspectives on Disability and Inclusive Primary Education in Uganda

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