title: The Cure PSP Care Guide: A Telephonic Nursing Intervention for Individuals and Families Living With Progressive Supranuclear Palsy.
abstract: Progressive supranuclear palsy (PSP) is a rare, progressive, and terminal neurodegenerative disease characterized by problems with ambulation, balance, mobility, vision, speech, swallowing, and behavior during the 7- to 10-year course of the illness. Substantial evidence in the nursing literature supports the benefits of patient education, self-management, chronic disease management, telehealth, and nurse navigation programs, which enhance patient and caregiver knowledge, improve day-to-day management by developing an awareness of resources, decrease dependence on services, and address caregiver needs. The Cure PSP Care Guide is a targeted telehealth nursing intervention aimed at providing knowledge, guidance, and resources to the vulnerable individuals and families living with PSP; identifying local resources; and building community. During the course of two telephone calls, individuals and their caregivers are assessed to develop a Cure PSP Care Guide designed to provide guidance along the trajectory. A knowledge assessment, self-efficacy scale, and Caregiver Strain Index are administered before and after the intervention to determine the program intervention effect. Caregiver knowledge assessments improved after the intervention, whereas strain scores were static. Qualitative data show the ability of the intervention to address caregiver needs for knowledge and support, daily management tips, and resource identification. The preliminary quantitative and qualitative data collected on this pilot project justify further exploration of the use of telehealth to remotely deliver nurse case management to the vulnerable individuals and families living with PSP.
authors.affiliation: Questions or comments about this article may be directed to Susan Rebecca Dunlop, RN MS, at rdunlop@jhmi.edu. She is the Associate Director, Johns Hopkins Parkinson's Disease and Movement Disorders Center, Baltimore, MD. Vicky P. Kent, RN PhD, is an Associate Professor of Nursing, Towson University, Towson, MD. Mary Lashley, RN PhD, is a Professor of Nursing, Towson University, Towson, MD. Trish Caruana, MSW, is an Executive Vice President of Education and Support, Cure PSP, Timonium, MD.
authors.forename: Susan Rebecca
authors.initials: SR
authors.lastname: Dunlop
authors.forename: Vicky P
authors.initials: VP
authors.lastname: Kent
authors.forename: Mary
authors.initials: M
authors.lastname: Lashley
authors.forename: Trish
authors.initials: T
authors.lastname: Caruana
mesh_terms: D017028:Caregivers / Q000193:education*; D019468:Disease Management; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D010353:Patient Education as Topic; D010865:Pilot Projects; D036301:Qualitative Research; D020377:Self Efficacy; D013494:Supranuclear Palsy, Progressive / Q000451:nursing*