The Experiences of Primary Caregivers of People with Learning Disabilities who have Committed an Offence: a Narrative Study

Abstract

Background and aims: The experiences of primary caregivers of adults with learning disabilities who have committed an offence is a largely neglected area within current literature. However, primary caregivers have an integral role in the provision of care of adults with learning disabilities and this has implications for service provision and rehabilitation. Our understanding of both learning disability and offending behaviour is affected by societal, cultural and political narratives and these have impact on a primary caregivers meaning making. Having identified a gap in our current understanding, this study aims to develop an understanding as to the storied experience of primary caregivers in order to inform clinical practise and raise awareness of the challenges faced.

Methodology: A qualitative approach was selected for this research. A purposive sample of five primary caregivers (three females and two males) was recruited through two NHS services and one community based contact. Field interviews were conducted with each participant, audio-recorded and transcribed. Narrative analysis was used to analyse the transcripts, focusing upon the content of information shared, the way in which the narratives were performed and the contextual factors which may influence story co-construction.

Analysis and findings: The narratives shared by participants are presented on a group level. Results are divided into two areas. Firstly the primary caregivers stories are presented chronologically in order to orientate the reader to the context in which primary caregivers were operating. The stories refer to ‘life before the offence’, ‘the offence’, ‘life since the offence’ and ‘future stories’. Secondly attention is given to the underlying emotional content of the storied experience, with four predominant emotions identified; Frustration, Anger, Grief and Fear. This gives an emotional underpinning through which we can interpret the emerging plots and subplots, with consideration of the similarities and differences within these. Four plots were identified: ‘Understanding’, ‘Proximity to offspring’, ‘Relationship with self and others’ and ‘Commitment to care giving role’. These narratives highlight both the temporal nature of the caregiving role and how it may be affected by service responses to the individual with learning disabilities and their families. The findings are considered in regards to their clinical relevance and implications for service provision. The strengths and limitations of the study and suggestions for future research are presented along with personal reflections.