The experiences of parents of children diagnosed with an intellectual disability: Social model of disability and Power Threat Meaning Framework perspectives

Systematic literature review

The social model of disability posits ‘disability’ is not innate, but conceptualised as an interaction between bodies and power inequalities which are maintained through societal discourses. Fourteen studies were systematically reviewed using Thematic Synthesis to explore the influence of discourses related to Down syndrome (DS) on the lived experiences of parents of children with DS. Three superordinate themes were generated: Othered parents, exploring how discourses place parents outside the ‘norm’; (In)visible and (mis)understood, outlining how the facial phenotype of DS led others to judge the desirability of parents’ children; Finding belonging and validation, highlighting some parents reject the position of ‘other’ and seek connection in the DS community. These findings suggest there is a clinical need to share with parents the range of health and social outcomes for people with DS and support parents to reflect on their positioning in relation to ableist discourses.

Empirical research project

The Power Threat Meaning Framework (PTMF) has not previously been utilised with parents of children diagnosed with intellectual ‘disabilities’ despite this parenting group commonly being oppressed by ableist social structures. This study explored parents’ experiences of narrative development and their views on the fit of the PTMF for making sense of distress related to challenges of parenting a disabled child. Six parents each participated in a series of three to four semi-structured interviews. Data was analysed 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. These findings emphasise the importance of adapting the PTMF on an individual basis so less pathologising understandings for both parents and professionals can be created.