The PTM framework and parents of children with intellectual disability diagnoses: experiences of generating narratives

Abstract

It is recognised that parents of children diagnosed with ‘intellectual disability’ (ID) are marginalised through ableist social structures. This study was the first to explore if parents of children diagnosed with ID found developing a Power Threat Meaning Framework (PTMF) narrative useful for making sense of their experiences in non-pathologising ways. Data from repeated interviews with seven parents were synthesised using reflexive thematic analysis. Three superordinate themes were generated Altered worldview, capturing how the PTMF supported parents to develop new insights; Reflections on the PTMF as an approach, outlining parents’ critiques of the Framework; The applicability of the PTMF to parents and ID services, highlighting how the PTMF is implemented within services needs careful consideration. Overall, participants found the PTMF to be a helpful approach which they thought could support development of less pathologising and more empowering understandings of parenting experiences.Points of interest The Power Threat Meaning Framework (PTMF) was developed as an alternative to psychiatric diagnosis. Rather than diagnostic labels, it supports people to recognise that their distress is an understandable response to their social circumstances and what has happened to them. Seven participants developed PTMF narratives about their experiences parenting people with an ‘intellectual disability’. We were interested in whether parents found the process of developing the narratives useful. Parents said using the PTMF helped them to be less self-blaming. They found the process empowering. Parents thought it was important that their PTMF narrative was developed with someone familiar with the Framework over multiple sessions. They thought that using the Framework by themselves would have been difficult and less effective. Parents believed the PTMF could be helpful for other parents of people with ‘intellectual disabilities’. They thought it could help professionals to better understand why parents were responding to services the way they were. This might lead to better collaboration between services and parents. Parents were worried the PTMF could be misused. It is important parents have control over if, when, where and with whom they use the PTMF to explore their experiences.