Living With Moderate-Stage Parkinson Disease

Abstract

The purpose of this study was to identify the principal intervention needs of elderly couples living with moderate-stage Parkinson disease and their preferences regarding the modalities of a possible nursing intervention. The study's framework of reference consisted of the transitions theory developed by Meleis, Sawyer, Im, Hilfinger Messias, and Schumacher (2000) and of the systemic approach developed by Wright and Leahey (2009). A qualitative design and a participative process were employed. Ten couples were interviewed dyadically. Intra- and interdyad content analyses were performed. Results indicate that the principal intervention needs of couples are geared to developing effective strategies for remaining healthy and planning for the future, to improving communication between spouses and with the formal and informal support networks, and to adopting concerted strategies to facilitate problem solving and role adjustment. Couples would prefer six or seven dyadic meetings, each 60-90 minutes long, every 2 weeks, at an easily accessible location. This study affords avenues for the conceptualization of a psychoeducational nursing intervention intended for couples where a spouse has moderate-stage Parkinson disease.

Improving self‐management for persons with Parkinson's disease through education focusing on management of daily life: Patients’ and relatives’ experience of the Swedish National Parkinson School

“…The reason for being in a group is to strengthen feelings of mutuality as a couple "being in this and handling it together." Several studies show that strong mutuality in the spousal relationship is associated with better mental health of both partners, reduced caregiver burden and improved relative quality of life (Beaudet & Duchame, 2013;Beaudet et al, 2015;Tanji et al, 2008;Wressle, Engstrand, & Granerus, 2007). In this study, the couple approach was generally appreciated but some relatives expressed a need for a "relatives-only" session to discuss more sensitive topics.…”

The palliative care needs and experiences of patients with advanced Parkinson’s disease: a qualitative scoping review

“…This theme is prominently addressed across the included literature ( 18 – 22 , 24 , 26 – 28 , 31 – 36 ). Upon receiving a diagnosis of PD, patients and their family members often grapple with intense emotional turmoil, characterized by profound sadness and apprehensions about the future.…”

“…However, when seeking information regarding prognosis, diagnosis, and home care services, patients and their families frequently encounter information gaps ( 19 , 22 , 26 , 27 , 33 ). Some are unsure about what questions to pose, while others are apprehensive about potential reprimands from physicians for making inquiries ( 19 ).…”

“…Moreover, caregivers frequently note that their lifestyle is constrained, their roles have shifted, and they experience physical and emotional fatigue ( 21 , 22 , 28 ). They articulate an urgent need for enhanced caregiving support and more comprehensive guidance on PD management.…”

“…They are concerned about the lack of information that would help them make informed decisions for the future ( 27 ). Both patients and caregivers are keen to understand available resources, how to access them, and how to adequately plan for the future, emphasizing the importance of understanding and navigating available services ( 22 ).…”