title: An exploration of the burden experienced by spousal caregivers of individuals with Parkinson's disease.
abstract: Although previous research has attempted to identify the needs of caregivers for individuals with Parkinson's disease (PD), most has focused on the demands associated with the physical needs of the patient, and not on "mental burden." This study used the repertory grid method to capture the full range of caregivers' subjective experience, quantify their perceptions, and to acquire information that might be useful in directing remediation attempts. Within this sample, caregivers reported far greater burden from "mental stress" (e.g., worrying about individual's safety) than from "physical stress" (e.g., lifting individual into bed). Specifically, caregivers were primarily concerned about spousal safety, as this requires continuous vigilance and constant worry. Caregivers also reported experiencing "little deaths" as the disease progresses, related to a loss of independence for the couple, and the steady diminishment of social networks. Increasing attention on the mental burden experienced by spousal caregivers promises to increase quality of care, and quality of life for individuals with PD, by improving quality of life for the caregiver.
authors.affiliation: Health and Rehabilitation Sciences, Faculty of Health Sciences, The University of Western Ontario, London, ON, Canada.
authors.forename: Kaitlyn P
authors.initials: KP
authors.lastname: Roland
authors.forename: Mary E
authors.initials: ME
authors.lastname: Jenkins
authors.forename: Andrew M
authors.initials: AM
authors.lastname: Johnson
mesh_terms: D000368:Aged; D017028:Caregivers / Q000523:psychology*; D004185:Disability Evaluation; D004644:Emotions; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009864:Ontario; D010300:Parkinson Disease / Q000451:nursing* / Q000523:psychology / Q000534:rehabilitation; D011788:Quality of Life / Q000523:psychology; D012449:Safety; D012720:Severity of Illness Index; D012934:Social Isolation / Q000523:psychology; D013315:Stress, Psychological / Q000209:etiology*; D011795:Surveys and Questionnaires