Capturing the Huntington's disease spousal carer experience

Abstract

The purpose of this exploratory study was to capture and describe the experiences of family carers of Huntington's disease (HD) patients, specifically in relation to their Quality of Life (QoL). Visual representations of QoL were gathered using ‘Photovoice’. Five spousal carers photographed and described elements of their life in which they felt their QoL was being enhanced or compromised. Using content analysis, nine manifest themes were identified and tentative latent inferences were made in relation to these themes. Although some positive issues did emerge, these were minimal compared to the negative impact that HD had on carers' overall QoL. Seven out of the nine themes that emerged were also evident in at least one of the seven QoL domains on the Comprehensive Quality of Life scale – Adult Version (ComQoL-A5); suggesting that QoL is negatively affected for these spousal carers. Findings are discussed in terms of implications for carers and health care professionals.