Using ‘Photovoice’ to explore the quality of life of informal carers of Multiple Sclerosis patients

Abstract

Background: Caring for someone with Multiple Sclerosis (MS) may negatively impact quality of life (QoL) of informal carers. However, there is a paucity of research exploring the QoL of MS carers from a qualitative perspective. Therefore, this study aimed to explore the lived experiences of MS carers and impact of MS on their QoL through the use of photovoice methodology. Method: Twelve MS informal carers (aged 30-73 years) took photographs of objects/places that represented enhancement or compromise to their QoL and wrote narratives explaining each photograph. 126 photographs and their corresponding narratives were analysed using content analysis. Findings: Eight themes emerged from the photovoice data: Unpredictability, sense of loss, precious moments, support, hopelessness, worries and troubles, escape and loneliness. Discussion: These findings suggest that although the impact of MS on carers’ QoL was mostly negative, there were also positive aspects to caregiving such as happy moments and the support of loved ones that helped ameliorate these negative events and enhance QoL. It is hoped that these findings will be useful in designing interventions to support these carers in future.