The ethnography of help - Supporting families with children with intellectual disabilities
Summers, N. (2010) The ethnography of help - Supporting families with children with intellectual disabilities. In: 3rd IASSID‐Europe Conference Integrating Biomedical and PsychoSocialEducational Perspectives, Rome, Italy, 20th‐22nd October 2010.
Publisher's URL: http://www.iassid.org/docs/iassidromeprogramme.pdf
This thesis explored parents’ of children with learning disabilities perceptions of family support workers’ helping strategies. A qualitative approach drawing on the principles of ethnography was used to explore the experiences of six families of the helping strategies adopted by family workers and posed three research questions: (1) What are the perceptions of parents, of children with learning disabilities, of the helping strategies of family support workers? (2) How do parents understand the world of “helping strategies”? (3) How do helping strategies that parents have experienced compare and contrast with existing theoretical models that are developed in professional educational programmes? A purposive sample of six families from one Unitary Authority in the West of England ,UK,was selected for this study. This study used a variety of data sources in this study which enabled me to examine the experiences of parents with children with learning disabilities. Interviews and documentation were the two data sources used in this study. The families’ understanding the world of helping was explored using a case study design and open-ended ethnographic interview methods. Documentation used in this study as data included any literature that organisations produced for the families in the sample and the education and training programmes of the professions. I also included a research journal in which I wrote during and after the interviews with the families. Three themes emerged from the findings; asking for help, the helper, and when we work with you. The findings suggest that parents have a detailed knowledge about the type of help they need to support their families. It would appear important therefore that the first contact that a parent has with a professional is a positive one. Parents need professionals who are able to offer them consistent support and have the skills to support families with complex emotional responses associated with asking for help and coming to terms with their child’s needs. Workers need to demonstrate a range of interpersonal skills when offering support to parents during the initial stage of contact with services. It is clear from this study that many parents were not aware of any alternative to professional home support, such as opportunity groups. The challenge of the constant need to build new relationships with different workers was another key finding in this study. Where relationships were effective they featured mutual trust, comfort, and shared learning, suggesting that these relationships were key to the parents’ ongoing mental and physical health. The common features of relationship breakdown were inconsistent support, changing workers, mistrust, lack of mutual respect and an inability to agree on the needs of the family and/or a lack of resources to support the family. Vocational programmes that educate and train future professionals need to build new skill sets into curricula and engage parents (with appropriate support) in the management and teaching of modules that focus specifically on the needs of children and adults with learning disabilities. The in-depth research process illuminated the many challenges parents face in the “world of helping” and have clearly identified factors that will contribute to supporting their sons and daughters to play an active and valued role in our society.
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