The Experience of Women Who Care for Spouses With Parkinson's Disease and Lower Urinary Tract Symptoms

Abstract

Objective: To describe the symptoms, bother, impact, and attribution of lower urinary tract symptoms (LUTS) and management strategies from the perspective of the spouse caregiver.

Design: A qualitative descriptive design with semistructured interviews was guided by the Theory of Unpleasant Symptoms and family systems theory.

Setting: Women were recruited from a Parkinson's Center at a Veterans Affairs hospital in the northeastern part of the United States. Their veteran husbands received care for Parkinson's disease at the center.

Participants: Participants were 15 female spouse caregivers of men with Parkinson's disease and associated LUTS.

Methods: Purposive sampling was used to select caregiver participants for audiotaped interviews. Semistructured interviews were conducted with the participants. A directed content analysis was used to code transcribed interviews and field notes.

Results: The cognitive, affective, and behavioral dimensions of caring for a spouse with LUTS were identified. Participants were knowledgeable about the direct effect of Parkinson's disease on the bladder. Their affective responses included experiencing bother, emotional distress from the impact of LUTS on their lives, and empathy for their husbands. Participants tried many behavioral strategies to manage LUTS but received limited professional assistance for daily LUTS management.

Conclusion: Multidisciplinary, patient- and family-centered approaches that provide education, treatment, and support are needed to promote better management of LUTS, maintain patient dignity, and reduce burden for the patient and family.

Keywords: Parkinson’s disease; caregivers; family; lower urinary tract symptoms; qualitative.