Personal Growth Scale for Family Caregivers of Individuals with Neurological Disorders - The goal of this proposal works purposefully toward NIDILRR’s vision of heightened participation for individuals with hereditary ataxia (HA). Rare, understudied and underserved, hereditary ataxia is a progressive neurological condition with no cure, nor are there FDA-approved disease-modifying medications for many HA variants. HA causes significant disability and bears the potential for institutionalization. However, through expanding the ability to quantify the lived experience of family caregivers of individuals with HA and endorsing and guiding the care work these caregivers provide, this proposal aims to see a resulting increase in social participation in populations with progressive HA. For those with severe progressive disability, achieving continued, maximal desired participation relies so much on the family caregiver. To accomplish this goal, this study will expand the scope of applicability of the Personal Growth Scale (PGS), currently tested for use with family caregivers of persons with multiple sclerosis (MS) or acquired brain injury (ABI), to family caregivers of individuals with HA. The robustness of the instrument to this new population will also be evaluated. Using both classical and modern psychometric methods, its psychometric properties will be assessed, existence and number of latent classes investigated, and its measurement invariance confirmed. This self-administered research and clinical instrument--which takes five minutes to complete--would close an important gap in the evaluation of the behavioral and psychosocial functioning of family caregivers of persons with HA. By assessing the functioning of these family members in their caregiving roles, clinicians will be able to more clearly appraise the psychological effects of the neurological condition on the caregiving family. Understanding the family caregivers’ positive responses to the neurological disorder’s effects on the patient and family—and having access to this data over time—will aid clinicians in identifying the best methods of, and timeframe for, fruitful intervention. Because the family caregiver’s successful emotional and family functioning has been linked to heightened social participation for patients with neurological disorders, this proposal has been inspired by, and tailored to, NIDILRR’s long-term goal of increasing the capacity for maximum desired community living and social participation of individuals with disabilities. Extant caregiver literature focuses overwhelmingly on the burden of the dual role of being both family member and primary caregiver, as well as the stress that the caregiver and the patient—care recipient—experience. Yet the caregiver’s capacity for a positive response to their new role can garner enormous benefits, with links to better quality-of-life measures in both the caregiver and the patient, and associations with enhanced social participation for the patients. To reach family caregivers of individuals living with hereditary ataxia, a sample will be recruited with the collaborative assistance of the National Ataxia Foundation (NAF) Research Registry. NAF has 16,000 active members, and growing, who enroll with the registry specifically to be recruited for research studies. The NAF is a patient-facing nonprofit organization founded in 1957 whose mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with ataxia and their family members.
