Journal des soins infirmiers et des soins

Euro Nursing 2018: Findings from a decade of research on the lower urinary tract symptom experience in men with Parkinson’s disease and their spouse caregivers - Joanne P Robinson, Rutgers University, USA

Joanne P Robinson¹, Helene Moriarty², Christine W Bradway³ and Lisette Bunting-Perry⁴

¹Rutgers University, USA

²Villanova University, USA

³University of Pennsylvania, USA

⁴University of Delaware, USA

Problem Statement: Lower urinary tract symptoms (LUTS) are an important but often neglected issue in patients with Parkinson’s disease (PD). The purpose of this presentation is to highlight findings from a series of studies conducted over the past decade that expand evidence about the prevalence and impact of LUTS in male PD patients and their spouse caregivers.

Theory and Methods: Guided by the Theory of Unpleasant Symptoms and family systems theory, four studies were conducted. All participants were recruited from the movement disorders clinic of a Veterans Affairs Medical Center. Study designs were: retrospective with total population sampling (N=271 clinic records); cross-sectional with convenience sampling (N=88 men with PD and LUTS); and qualitative descriptive with purposive sampling of cross-sectional study participants (N=11) and their spouses (N=15). Data from clinic records and interviews (structured and semi-structured) were analyzed using statistical procedures and content analysis (directed and conventional).

Findings: Most patient participants had mild PD symptoms, yet UI prevalence was 24% and 92% in retrospective and cross-sectional studies respectively. Patients had limited awareness of the neurologic contributions of PD to LUTS. Embarrassment, bother, and diminished self-esteem jeopardized their relationships, intimacy, social life, and travel. Spouses understood that PD caused LUTS and empathized with their husbands; however, they still experienced bother and emotional distress related to LUTS and coped primarily by “dealing with it.” Patients and spouses relied mostly on do-it-yourself strategies to manage LUTS – some ingenious and some ill-advised. Conclusions: LUTS may be highly prevalent in the early symptomatic phase of PD, negatively affects patients and families, and often escapes the attention of providers. We recommend: screening patients and families for LUTS issues in all stages of PD; inquiring about burden and management strategies; and referring to urology providers as needed. LUTS treatment deserves designation as a priority area for PD research.

Data Collection Instrument and Procedure

A generally subjective review survey was utilized to gather the information. The survey comprised of four sections. The initial segment of the poll comprised of close-finished inquiries that were utilized to catch guardians' and patients' segment data. The subsequent part contained open-finished inquiries identified with PD, PD patients, and their consideration. Inquiries in the third part were Likert-type addresses that requested that the members assess (rate) upholds accessible to them in thinking about the patient under their consideration. The inquiries were replied on a ten-point scale going from 1 (extremely low) to 10 (exceptionally high). The fourth part had two open-finished inquiries that posed to the members to add any data or thought esteemed applicable to them.

The survey was managed to members with the assistance of PPSO-E staff in a lounge area where guardians stayed when the patients they go with were going to preparing. The poll was managed to five of the members who can't peruse and write in a type of meeting by the specialist. The analyst made an honest effort to inspire however much data as could be expected from these members. Investment in this exploration was totally intentional and oral assent was acquired from every member. The motivation behind the exploration was disclosed to the members both in the survey and orally.

The poll was arranged and managed in Amharic to permit the members' most extreme comprehension of the inquiries and give more extravagant and precise information. Members were given sufficient opportunity and asked and urged orally to give as much data they were agreeable to give.

Conclusion

This examination pointed toward investigating, revealing, and getting encounters and viewpoints of guardians of patients with PD. To this end, it gathered information from 20 parental figures who reacted to a survey that comprised of generally open-finished inquiries that posed to them to give their own records of issues identified with PD and thinking about patients with PD. Examination of the information yielded a few topics including absence of adequate help to the parental figures, guardians' sympathy and patient's boldness, and deficiency and cost of PD drugs/remedies. To the scientist's best information, this exploration is one of the first in quite a while kind and has created significant data that has broad ramifications to meet the interesting necessities of patients with PD and their guardians and other relatives in Ethiopia and past.

Notwithstanding, this exploration isn't without impediments. The principal clear restriction is that it produced information from just 20 members. Second, it depended on self-revealed information alone. Third, the information came from parental figures as it were. Though these and other possible impediments, this exploration has added a ton to our comprehension of the encounters and viewpoints of individuals who care for patients with PD and established a decent framework for additional examination into issues identified with patients with PD and their consideration. Future exploration would profit by broad and serious information that would come from different wellsprings of information through numerous methods of information assortment.