“It’s not just a thing, it’s everything”. A longitudinal narrative study on the parental experience of The ADHD diagnostic journey

Nicholson, Tom (2023) “It’s not just a thing, it’s everything”. A longitudinal narrative study on the parental experience of The ADHD diagnostic journey. Doctoral thesis, Northumbria University.

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Abstract

Attention Deficit Hyperactivity Disorder [ADHD] is a common childhood diagnosis affecting an estimated 5-7% of school aged children. This thesis explores the needs and experiences of parents as their children traverse the often arduous and challenging process of referral, assessment, and diagnosis of ADHD otherwise characterised as the ‘ADHD diagnostic journey’.

Narrative qualitative data was collected through 21 semi structured longitudinal serial interviews over a two-year period with seven parents of children currently on the ADHD diagnostic journey.

The study employs a sociocultural narrative analytical framework and the concept of narrative ‘plots’ were developed to make sense of the construction and delivery of parental narratives. Within the findings, seven narrative plots emerged which encapsulate parental experiences on the ADHD diagnostic journey: “There Was a Problem”, “The Diagnosis”, “The System”, “The Fight”, “The Mother”, “Narratives Regarding Medication”, and “The Balancing Act Between Disability and Difference”.

Additional findings emerged demonstrating how the parental ADHD diagnostic journey can be conceptualised as two significant forms of ‘illness work’. The “Diagnostic Quest” details parental work recognising their children’s needs, seeking diagnosis, engaging with the system of healthcare, and fighting for their children’s needs and selfhood. Parents also engage in two distinct forms of biographical illness work. The personal and individual parental biographical response to the diagnostic journey (“Self Biographical Illness Work”), and parental biographical adjustment and recontextualisation of their children (“Child Biographical Illness Work and Recontexualising the Child”).

This project provides original contributions to ADHD parental research as the first qualitative study to explore the entirety of the ADHD diagnostic journey, including pre- and postdiagnostic periods additional to the experience of children’s diagnosis. Original contributions are also made towards the field of illness sociology by utilising the theoretical concepts of illness work and biographical work to ADHD in a novel way.

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