“Take Us Into Account”: Perspectives of Family Members of People With Parkinson's Disease Regarding Speech-Language Pathology Intervention

Abstract

Purpose: While communication changes associated with Parkinson's disease (PD) have been documented, research on the impact of these changes on family members is just beginning to emerge. With this new focus on family, questions arise as to how well speech-language pathology services address their needs communicating with their loved one with PD. The purpose of this study was to explore the experiences of family members of people with PD (PwPD) and their recommendations for speech-language pathology services that incorporated their needs. Method: Seventeen spouses/partners of PwPD participated in focus groups that were recorded, transcribed, and analyzed using thematic analyses. Results: Three themes emerged, all focusing around the central tenet that the experiences of family members, and hence their need for speech-language pathology support, transitioned through the stages of PD progression. Theme 1 summarized increasing burdens on family to manage communication as PD progressed beyond a brief period of independent strategy use by PwPD. Theme 2 highlighted multifactorial contributors to communication burdens on families, with cognitive impairments being the most underrecognized. Theme 3 illustrated how families wanted more intervention options from speech-language pathologists (SLPs) that included them, but with a tailored approach for PD stages and personal preferences. Conclusions: When SLPs provide families with either generic communication strategies or strategies that do not fit the individualized needs of PwPD and their families, we may inadvertently be increasing the burden on families. There is a need for systematic, evidence-based, family-centered interventions that include, but go beyond, current speech-focused interventions to meet the shared communication needs of PwPD and their families.