Challenges in home care for stroke patients: how caregiver resilience relates to patient disability levels

Technical Summary: Challenges in Home Care for Stroke Patients: How Caregiver Resilience Relates to Patient Disability Levels

Problem Statement
Stroke represents a leading cause of global mortality and the primary reason for prolonged adult impairment, often resulting in acute brain dysfunction and significant dependency on others for daily activities. More than 30% of stroke survivors experience complete or partial dependence, creating a substantial burden on family caregivers. These caregivers frequently face multifaceted challenges, including role changes, financial strain, sleep deprivation, and psychological stress, which can deteriorate their mental health and negatively impact patient rehabilitation. While resilience—the capacity to adapt and regain balance in crises—is recognized as a mitigating factor against caregiving stress, existing research on family resilience in the context of acute stroke patients remains limited, often focusing more on individual coping strategies. This study addresses the gap in understanding the specific correlation between family caregivers' resilience and the disability levels of stroke patients receiving home care.

Methodology
The study employed a descriptive-analytical and correlational design involving 180 stroke patients and their primary family caregivers in Hamadan, Iran. Participants were selected via convenience sampling from the neurology department of Besat Hospital.

• Inclusion Criteria: Patients must have experienced a first-time stroke (ischemic or hemorrhagic), been discharged to home care for at least two months, and reported no specific psychological illness. Caregivers were required to be over 18, have at least an elementary education, be a family member serving as the primary caregiver for at least two days a week for a minimum of two months, and have no history of specific psychological illness.
• Data Collection: Data were gathered using a four-part questionnaire during a 25-minute clinic visit or at home. The instruments included:
  1. Demographic data for both patients and caregivers.
  2. The Sixby Resilience Scale (modified to 66 items with three subscales: communication/problem solving, religious/social resources, and problem acceptance), scored on a 4-point Likert scale (range 66–264).
  3. The Barthel Index to assess patient disability, categorizing patients as completely dependent (0–40), relatively dependent (41–99), or independent (100).
• Analysis: Data were analyzed using SPSS 26. Descriptive statistics (frequencies, means, standard deviations) were calculated. Hypothesis testing utilized Pearson correlation coefficients, ANOVA, and multiple regression, with a significance level set at p < 0.05.

Key Results

• Demographics: The mean age of patients was 58.62 ± 4.38 years, and caregivers was 33.78 ± 5.62 years. The majority of caregivers were female (72.8%) and children of the patients (46.3%).
• Resilience Levels: Caregiver resilience scores indicated that 5% were low, 37.8% medium, 45% "much," and 12.2% "very much," with a mean score of 173.56 ± 6.62.
• Disability Levels: According to the Barthel scale, 14.5% of patients were completely dependent, 63.3% relatively dependent, and 22.2% independent, yielding a mean score of 87.22 ± 4.78.
• Correlation: A significant inverse relationship was found between caregiver resilience and patient disability levels (Pearson r = -0.72, p < 0.001). The study notes that higher disability levels in patients were associated with higher resilience scores in caregivers.
• Demographic Correlations: Regression analysis revealed no statistically significant relationship between caregiver resilience and demographic factors (e.g., age, income, education). Similarly, no significant relationship was found between patient disability levels (Barthel Index) and patient demographics.

Significance and Claims
The paper claims that the study highlights a critical inverse correlation between the resilience index of family caregivers and the disability levels of stroke patients. The author posits that despite the high levels of resilience observed in caregivers, this trait does not appear to be significantly influenced by demographic variables, nor does patient disability correlate with patient demographics.

The author asserts that these findings underscore the necessity for improved support systems for stroke survivors' caregivers through targeted interventions. They suggest that health policymakers and those responsible for education and home care should focus on strengthening the resilience of families and primary caregivers. This strengthening is proposed to support all aspects of health, including physical, mental, spiritual, economic, cultural, and social dimensions. The study concludes that resilience is a relevant factor in caring for disabled and dependent stroke patients and should be treated as a potential resource to be fortified through appropriate measures.

Limitations
The author acknowledges limitations including caregiver fatigue and burnout, which may have affected questionnaire completion, and instances of incomplete cooperation from participants. However, they note a key strength: the inclusion of participants at least two months post-discharge, ensuring that the data reflects true caregiving burdens rather than the initial hospitalization period where nurses primarily managed care. Initial screening based on stroke severity also helped refine the homogeneity of the study population.