A Mother’s experience of the diagnostic process of Autistic Spectrum Disorder (ASD).
Introduction and Background
The aim of this qualitative research study was to evaluate how mothers’ experience the diagnostic process of Autistic Spectrum Disorder (ASD) for their child in a local NHS trust. Autism Spectrum Disorder (ASD) is characterized by persistent deficits in social communication and social interaction across multiple contexts; restricted, repetitive patterns of behaviour, interests, or activities. This study was conducted because the needs of the population do not appear to be met. Experientially some dissatisfaction emerged locally from mothers around the process of diagnosis.
Methodology
The research design used Interpretative Phenomenological Analysis (Smith et al, 2009). Semi – structured interviews were carried out on four mothers of children between the ages of 5-16 years who experienced a diagnosis of Autism Spectrum Disorder within the last two years. These elicited a wealth of rich in-depth data. The interpretation consisted of close, line by line analysis which led to the identification of themes.
Findings
The four master themes related to the diagnostic process focusing on: Support; with sub themes of professional support and external support. Waiting; with sub themes of long drawn out process and chasing feedback. Emotions; with sub themes of negative and positive and mixed experience; with sub themes of frustration and helped me. These findings indicated that healthcare professionals assumed they understood the meaning from the mother’s perspectives of the diagnostic process. The impression gained from the mothers was that professionals actually had limited understanding of the day to day challenges they faced away from clinic. This suggests that professional support is more likely to be appropriate and improved if staff were assisted to better understand the mother’s whole life experiences, perspectives and needs.
Conclusion and Recommendations
This is the final report to the Florence Nightingale Foundation but the writing up of the study for the MSc dissertation is still in progress and is expected to be completed early in 2017. The value of this study to patients, the public and healthcare professionals is that healthcare professionals need to be aware that they may not fully understand the meaning of the diagnostic process from the mothers’ perspective. It is recommended that awareness of the disparity of perspective is highlighted to professional working with these families through publications and conference presentations.