The development and validation of a scale to measure the impact of Huntington's Disease on the quality of life of spousal carers.

The purpose of this thesis was to systematically investigate the factors that enhance and compromise the lives of Huntington's Disease (HD) spousal carers by utilising the
theoretical construct of quality of life (QoL). Three exploratory studies provided evidence that spousal carers of I-ID patients have specific difficulties in maintaining their QoL whilst continuing in a primary care-giving role. Study 1 provided preliminary evidence that spousal carers of I-ID patients and health care professionals would value a disease specific QoL scale that could be used to evaluate spousal carers' objective and subjective QoL. Study 2 established that spousal carers of I-ID patients often experience loneliness, a need to escape and a unique sense of loss whilst trying to adequately care for their loved ones and maintain some form of QoL for themselves. Study 3 provided further evidence that QoL is compromised in many ways and is an issue for I-ID carers. The carers in this study often
neglected their own needs as the care giving role and disease processes 'took over' their lives as well as the life of their I-ID affected spouse. The findings of these three studies prepared the way for the development of a disease-specific QoL measure for spousal carers of lID patients. Validation of the Huntington's Disease Quality of Life Battery for Carers(HDQoL-G was carried out in study 4. The newly developed scale was found to have good internal consistency, test-retest and face validity. It is hoped that the HDQoL-C will be used in the future to quantify the caregiving experience in I-ID in order to implement and assess therapeutic interventions.