Predictors and Changes of Self-Perceived Burden Among Stroke Survivors: A 3-Month Follow-Up Study

This is all a direct result of not having protocols leading to 100% recovery. Solve the primary problem, 100% recovery, NOT this distress from your medical team not knowing what the fuck to do to get you 100% recovered. 

Predictors and Changes of Self-Perceived Burden Among Stroke Survivors: A 3-Month Follow-Up Study

Yuanyuan Wei^1,2†, Xiaoran Ren^3†, Xiangni Su¹, Xianni Wang⁴, Yan Hua¹, Yu Chen¹, Ruijie Shi¹, Pei Shao¹, Hongjuan Lang¹ and Chunping Ni^1*

• ¹School of Nursing, The Fourth Military Medical University, Xi'an, China
• ²Leshan Retired Cadre Sanatorium, Sichuan Military Region, Leshan, China
• ³Department of Nursing, Shaanxi Traditional Chinese Medicine Hospital, Xi'an, China
• ⁴Tangdu Hospital, The Fourth Military Medical University, Xi'an, China

Background and Purpose: Patients' self-perceived burden (SPB) is associated with distress, which has a potentially negative influence on disease rehabilitation and quality of life. Stroke represents a significant health and social burden. The aim of the study was to assess, compare, and identify predictors of SPB in stroke survivors during the first 3 months post-stroke.

Methods: A prospective longitudinal study was used. Consecutive stroke inpatients were recruited from the neurology department of three general hospitals in Xi'an, China. Patients were surveyed using the Self-perceived Burden Scale (SPBS) on the fourth day of admission (Acute phase, Time 1, T1) and 1 month (Time 2, T2) and 3 months (Time 3, T3) post-stroke.

Results: Considerable burden was experienced by 84.15–91.50% of patients in the first 3 months post-stroke. The mean score of physical burden was the highest. Over time, physical, emotional, and economic burden all declined. The following characteristics had significant association with increased patient SPB at T1, T2, and T3: age, self-evaluated economic pressure, comorbidity, and functional status (P < 0.01). Patients' knowledge about stroke was only significantly associated with SPB at T3 (P < 0.01).

Conclusions: Patients experienced a high degree of SPB in the early stage after stroke. Addressing the characteristics and predicting factors as well as the development of a targeted intervention for SPB may improve survival and post-stroke disability.

Introduction

Stroke is a major cause of long-term disability worldwide (1). It is the second commonest cause of death and the leading cause of adult disability in China (2). The Chinese National Stroke Registry reported that stroke occurred in more than 7 million Chinese people in 2011, and many survivors experienced persistent difficulty with daily tasks (3). The suffering caused by post-stroke residual disability has a devastating effect on the daily lives of patients and their families. Its associated health care expenditures are enormous to both the family and the national health care system (1, 4, 5). Stroke survivors, especially those with a disabling condition, regularly rely on the family's support to meet the demands of their daily lives. For some patients, the receiving care can lead to the sense of having become “a burden to others.” This sense of burden was referred to as “self-perceived burden” (SPB) (6).

SPB is defined as “empathic concern engendered from the impact on others of one's illness and care needs, resulting in guilt, distress, feelings of responsibility, and diminished sense of self” (6). McPherson found that medium to high levels of SPB were mentioned by 70.2% of stroke patients (7). In Zou's study, 91.54% of stroke patients with hemiplegia had SPB (8). The SPB is associated with patients' sociodemographic and clinical characteristics. It might differ among patients with different family financial conditions, medical expenses, functional status, and social supports (9, 10). Patients' SPB has a negative impact on their quality of life (QOL) (7). It is worth noting that patients with higher levels of SPB were less likely to seek help from others (6). The SPB may threaten individuals' coping and continued progress following stroke. Most studies, however, focused on the burden of caregivers of stroke survivors (11) or were cross-sectional studies (8–10). Despite existing evidence that SPB experienced by stroke patients affects stroke rehabilitation, emotional and mental health, and QOL, studies on the SPB of patients in the acute and recovery phase shortly after stroke are inadequate. Thus, this longitudinal study aimed at determining the levels of SPB experienced by stroke survivors during the first 3 months post-stroke and identifying influencing factors of SPB.