Author: Kamal Pokhrel (Sharma)
Pokhrel (Sharma), Kamal, 2020 Parental engagement in caring for and educating children with disabilities in a western region of Nepal: Experiences and perspectives of parents and professionals, Flinders University, College of Education, Psychology and Social Work
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The aim of this research was primarily to elicit the experiences and insights of parents of children with disabilities in a western region of Nepal and, in addition, the perspectives of local teachers, head teachers, community members and government officials. A relational approach has deeply informed all facets of this qualitative research, from the way the researcher conducted informal interview conversations with the participants in their own language and in their own homes, local tea shops and schools, to the way vignettes for the focus group discussions were created to highlight the richness of parents’ insights, joys and challenges as they raised their children. These research methods underpinned by a relational research approach provided participants with a safe and empowering environment in which to air issues. Similarly, case-focused portrayals and thematic narratives, drawing on the narrative approach to data presentation and interpretation, were able to draw out socio-cultural and institutional factors relating to the parental experiences and challenges of caring for and educating their children.
The key finding that emerged from this research is that Nepalese parents of children with disabilities are greatly invested in their children’s education, and want to be involved and work in partnership with teachers, yet there are significant barriers preventing them from doing so. They are a significant untapped resource and, until this study, the extent of this commitment of parents to the education of their children was not known.
In addition, this research has found that parents feel confused and uncertain as their traditional folk wisdom about disability conflicts with the scientific knowledge they are increasingly encountering through their efforts to access different services and increasing media coverage in rural areas. The lack of external support for these families has further left them alone to live and deal with their children’s disability. Moreover, women and girls of families living with children with disabilities are more affected than their male counterparts, due to women’s stereotyped roles and the continuing dominant patriarchal culture in Nepal. Moreover, parents are deeply concerned about the healthcare needs of their children with disabilities, prior to the schooling of these children, suggesting that the health and education needs of their children with disabilities are intricately linked and hence the need for collaborative approaches to service delivery to help these families to meet their children’s needs.
The focus of current interventions in Nepal is largely based on government-sanctioned scientific knowledge that tends to ignore folk wisdom and expertise. This has led parents to perceive themselves as incompetent, which has undervalued their existing strengths to contribute to modern processes. It is clear that greater care is needed to develop interventions to suit the local circumstances, drawing on grassroots folk wisdom and contextual needs. It is hoped that the findings from this research will help policymakers and communities to create bridges between local and scientific knowledge, such as home and school, so that both parents and teachers can begin to feel more confident in working together for the wellbeing and learning of the children.
Keywords: children with disabilities, parental engagement, parental journey, coping strategies, parental choice, inclusive education, models of disability, Nepal
Subject: Education thesis
Thesis type: Doctor of Philosophy
Completed: 2020
School: College of Education, Psychology and Social Work
Supervisor: Leigh Burrows