AbstractEarly development of service delivery in a large country with many competing demands on resources needs careful consideration. Assessing the setting and needs of the target audience prior to service delivery is important for knowledge-translation initiatives to succeed even in developed countries. This becomes more important in the case of developing countries such as Pakistan where underdeveloped resources, dysfunctional health systems, limited health budget, severe shortage of mental health workforce and limited understanding of neurodevelopmental disabilities among relevant professionals pose plenty of challenges in providing adequate health care services to children with disabilities and their families (Elsabbagh et al. 2012; Malhotra and Vikas, 2005; Sharan, 2008; Samadi, 2011; Tareen et al. 2008; WHO, 2005). In addition, developing best practice principles with limited available resources, when ASD is an emerging field in Pakistan, is a challenge. Assessing the setting and understanding of the needs of parents and professionals becomes vital.
This study aimed to examine the most appropriate methods of knowledge translation for parents of children with ASD in the context of Pakistan. Following the Knowledge-to-Action (KTA) model of Knowledge Translation (KT), the study encompassed several phases. As this was a multiple-staged study for developing best practice principles, different research instruments were used at different stages according to the needs of the study in order to collect necessary data.
To gain insight into the current attitudes and status in Pakistan, two questionnaires, a series of interviews and a focus group with parents of children with ASD living in Pakistan and professionals working with these families were administered at the beginning of the study. This allowed data to be collected on service provision, the satisfaction of parents with the services provided, as well as their needs regarding a potential parent support pack.
Data were also collected regarding the type and level of information that should be provided to parents of children with ASD with reference to the Pakistani context and the best medium for the information to be provided, again with reference to the Pakistani context.
The results of the study indicated that current provision for children who may have ASD and their families living in Pakistan was very limited. There was no provision of staff within mainstream schools for such children, nor was there any respite care for them. The few special schools and therapy units that were available for children with ASD were located in the major cities of the country. Additionally, the process of getting a diagnosis for children with ASD was not well organized in Pakistan. Children were sometimes misdiagnosed and the struggle for parents continued, for up to seven years in some cases, to get a diagnosis that matched the child‟s symptoms. The results also indicated that currently there was very limited provision for parents to gain information or training for supporting their child with ASD in Pakistan.
Findings suggest that a brief and easily readable Urdu booklet would be an appropriate method of transferring information to parents of children with ASD in the context of Pakistan. The reasons included limited resources, limited understanding of the condition among communities and relevant professionals, problems associated with access and cultural constraints.
On the basis of the results of data collected for the present study, a tailored parent information and guidance pack suitable for the Pakistani context was developed by working with a range of stakeholders. Once the prototype was developed and piloted, two questionnaires were administered to parents of children with ASD living in Pakistan and professionals working with these families to evaluate the information and guidance booklet. Implications for future research and practice are discussed.
|Date of Award
|Marie Thomas (Supervisor) & Amanda Kirby (Supervisor)