I am everything but myself: Exploring visual voice accounts of single mothers caring for a daughter with Rett syndrome

Date

2018-01-24

Advisors

Journal Title

Journal ISSN

ISSN

1478-0887
1478-0895

Volume Title

Publisher

Taylor and Francis

Type

Article

Peer reviewed

Yes

Abstract

Caring for a disabled child as a lone parent is complex and dynamic, and can affect well-being significantly. Five single mothers caring for a daughter with Rett syndrome took photographs to document their experiences prior to taking part in extended interviews lasting one to two hours. Verbal and visual data were analysed together using interpretative phenomenological analysis. Two inter-connected themes are presented. Committing to ‘Total Caregiving’ captures the ways in which the mothers aspired to excel at caregiving, anticipating and meeting their daughter’s needs, projecting them from stigma but at considerable cost to themselves, Self-Abnegation and Existential Crisis outlines the associated psychological challenges experienced by the women – especially how they felt ‘fused’ in a negative triad with their daughters and a personified ‘Retts’; a malign all-encompassing force in their lives. Applications of the findings to interventions and an evaluation of the methodologies in the context of qualitative research are offered

Description

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link

Keywords

Rett Syndrome, phenomenology, photo-interviews, caregiving

Citation

Williamson, I. (2018) I am everything but myself: Exploring visual voice accounts of single mothers caring for a daughter with Rett syndrome, Qualitative Research in Psychology, 16 (4), pp. 566-590

Rights

Research Institute

Institute for Psychological Science