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Final Report Summary - CDEVEM (Understanding parents' perspective on childhood disability. Strengthening expertise through qualitative validation of an explanatory model.)

This project departed from an explanatory model published by the fellow in 2012, regarding the experiences and decision-making processes of parents of deaf and hard-of-hearing children. Within this model the concept of „social construction of deafness“ was central and – due to its theoretical complexity – required further investigation. The social construction of deafness and its meaning for parents‘ experiences and decision making were investigated through the following MAIN OBJECTIVES:
(1) To investigate the relevance and importance of the different clusters and factors in the model for explaining parents' decisions in the care trajectories of congenitally deaf children; this includes investigating whether new relevant factors should be added to the model
(2) To assess the relations in the Explanatory Model between different clusters and factors, and to make additions/modifications where necessary;
(3) To analyse the influence of the specific organisation of early intervention services on the level of the clusters, factors and relations in the model. This implies assessing the implementation of the model for analysing parents’ experiences of the care trajectories within a specific national context.
These objectives were pursued through a qualitative study design including interviews with parents, deaf and hard-of-hearing children themselves, and their teachers. The research objectives were achieved through four more or less consecutive *work packages* with the following main activities:
*RESEARCH ACTIVITIES regarding WP1: preparation of qualitative data collection*
Scientific literature in the field of childhood deafness/disability and parents’ perspective was studied to critically assess and update the theoretical framework published in 2012.
Topic lists were developed and tested for deaf and hard-of-hearing children, their parents and teachers based on the study of literature and departing from a life course narrative perspective.
A protocol for recruitment of participants was developed with support of the scientific board and in collaboration with key partners, i.e. the National Hearing and Speech Institute of Iceland (HTÍ - Heyrnar- og talmeinastöð Íslands) and the Communication Centre for people who are Deaf or Hard-of-Hearing. The partners assisted in sampling and recruitment of families in Iceland with children 8-18 years old who have at least a moderate hearing loss at best ear. Invitations in Icelandic and Icelandic Sign Language were additionally published on the project website and Facebook page. Teachers were recruited through collaboration with the Icelandic school for deaf children, Hlíðaskóli. Approval for the project was obtained from the Icelandic Scientific Ethics Committee (VSN).
*RESEARCH ACTIVITIES regarding WP2: qualitative data collection*
Invitations were sent to a sample of 100 percent (N=39) of the population of deaf and hard-of-hearing children and their families. Invitations sent to teachers at school for deaf children.
Interviews were conducted with children and their families, and teachers, assisted by a hard-of-hearing Master-student in Disability Studies and – when necessary – a certified sign language interpreter. Narratives of families were focused on their experiences of care, participation in school, family and leisure. In total, 20 interviews were held in the capital area and in the countryside. Observer triangulation was performed after each interview.
*RESEARCH ACTIVITIES regarding WP 3: data analysis & assessment/adaptation of the Explanatory Model*
Transcripts were coded thematically, departing from the topic lists and with open coding for additional topics. General interpretation of the coding was conducted in collaboration with Hanna Björg Sigurjónsdóttir, aimed at determining the most relevant sub-topics for further analysis in relation to the general aims of the project. Then, critical discourse analysis was conducted regarding parents‘ experiences to support the theoretical development of the explanatory model, with a focus on the concept „social construction of deafness“. The analysis was written up in a scientific paper.
*RESEARCH ACTIVITIES regarding WP 4 analysis of the influence of the societal context*
The societal context was mapped based on documents, websites and interviews with stakeholders in early intervention services and education. Data were analysed from a Bourdieuian framework to connect parents‘ experiences to the societal context in which they act in the interest of their children and make decisions. Writing up of recommendations for early intervention professionals and policy up in a short paper which will be translated to Icelandic. Writing up of the scholarly findings relevant to an international audience in a scientific paper for the Scandinavian Journal of Disability Studies.
Focusing on the parents‘ perspectives and using both a critical discursive analysis and a narrative approach from a Bourdieuian perspective, we uncovered the importance of three closely-related but different processes in the narratives of the families, which were related to parents‘ social construction of deafness, their experiences, identities and decision-making processes.
*ACCESS TO KNOWLEDGE and information:*
Parents‘ access to knowledge and information is crucial to the way in which parents give meaning to hearing loss and deafness, and to their decision-making regarding mode of communication, education, assistive devices, rehabilitation care and therapy. This emerged from the fellow‘s previous research and it has been discussed by other scholars. Through our analysis we were able to shed more light on this aspect. Parents appear not merely as recipients of information, but active agents in collecting, processing and using information in their identity construction and decision making. Parents place their own experiences within a framework of formal and informal knowledge about deafness, however the degree to which they obtain access to such knowledge variates and appears to depend upon their social relations, previously acquired knowledge, and the way in which they engage in interactions with those who may provide access to knowledge. With regard to the latter we found that parents who communicated and dealt with other stakeholders within professionally valued discourses appeared to obtain good access to people and knowledge in the field of deafness. Parental approaches that are not in line with what is valued in the field may lead to limited access and limited options for parents to develop their agency. Overall, less variability appeared in parents‘ access to medical information about deafness.
*OPPORTUNITIES TO LEAD the implementation of decisions related to care, education, family life:*
From the analyses emerged the importance for parents to be able to be leading in the implementation of decisions concerning their child. This is an issue that has not been given much attention in the literature, but it appeared to play an important role in parents‘ ability to actively participate in giving meaning to the deafness or hearing loss of their child. Some parents in the study were central in communication and implementation of care, education and leisure, while other parents appeared to be in a position where professionals in either services or education were leading. Whether or not parents were leading or central in this social network influenced the way in which different actors worked for the well-being of their child. For example a central role for parents appeared to improve the quality of reasonable accommodations at school and the possibility to re-evaluate and make changes when needed.
*OPPORTUNITIES TO BE IN CHARGE of support and collaboration with partners:*
Apart from being central in the implementation of care and support, parents‘ experiences also differed in terms of the opportunities they had to be in charge of their child‘s trajectory all along through services and education. Some parents in the study were able to claim ownership of identity construction and decision-making processes, which appeared closely related to their position in the previously mentioned processes. Other parents displayed less agency, citing prominence of professionals in these processes, as well as limited knowledge and insight into the experience of deafness.
This study gives qualitative indications of how parents‘ agency and their potential to have influence on the way their child‘s hearing loss is socially constructed depend upon their relations with knowledge and actors in the field. In other words, parents occupy positions in social spaces where certain actors and certain knowledge possess the authority to make meaning of hearing loss and deafness and construct deaf children‘s identities, and we found considerable diversity in the way parents participated in these social spaces. This diversity seems to be in part connected to class-related aspects such as parents‘ education, but also – more importantly – to the practices and discourses employed by professionals and others in the field of deafness. This in turn may affect the experience of the child and his family, which not only emphasises the theoretical relevance of these findings, but it also impacts Icelandic and European societies by providing a framework for services and professionals to reassess their practices. In conclusion, scrutinising the concept of „social construction of deafness“ of the explanatory model on which this study is based has provided more insight into the dynamics of being a parent of a deaf or hard-of-hearing child who interacts with different services and professionals in the interest of the child.
Stefan Hardonk-University of Iceland, Centre for Disability

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