Spinal cord injuries (SCI) are a growing concern worldwide, with increasing incidence rates annually. In China, the rates are particularly high, ranging from 14.6% to 60.6%, which poses a significant challenge to the healthcare system. The traditional inpatient rehabilitation model struggles to meet the long-term needs of SCI patients, especially considering the high costs and poor regression effects. As a result, many patients opt for home-based rehabilitation, which presents its own set of unique challenges and opportunities.
Home-based rehabilitation for SCI patients is a collaborative effort between the patient and their caregivers, with the primary goal of maximizing autonomy and dignity. However, the lengthy and often frustrating process can lead to self-doubt and various health issues. Self-management, an active process of managing one's thoughts, feelings, and actions, is crucial for positive outcomes during home rehabilitation. Previous studies have shown that SCI patients often struggle with adherence to rehabilitation training at home, and this may be linked to their self-management abilities.
The concept of locus of control, an individual's belief in their ability to control events, plays a critical role in self-management. Those with an internal locus of control are more confident in their health decisions and often adopt proactive coping strategies. In contrast, individuals with an external locus of control believe their health is determined by external factors, which can lead to negative health outcomes. Understanding how control points influence self-management practices is essential, especially for SCI patients undergoing home rehabilitation.
This study aims to explore the genuine experiences and subjective feelings of SCI patients during home-based self-management. By adopting a descriptive qualitative research approach and utilizing the patient persona technology, we can gain insights into the needs and experiences of SCI patients based on the concept of precision nursing and the locus of control theory. Through semi-structured interviews, we aim to uncover the unique challenges and coping strategies of SCI patients, ultimately leading to the development of tailored intervention plans.
The study included 17 SCI patients who self-managed at home, with a diverse range of characteristics. Based on their experiences, we identified six dimensions of patient persona labels: basic characteristics, cognitive characteristics, behavioral characteristics, psychological characteristics, social support, and medical resource status. These dimensions helped categorize patients into three distinct groups: autonomy-driven, passively dependent, and suffering and conflicted.
The autonomy-driven group, primarily urban residents with strong rehabilitation desires and financial stability, demonstrated positive self-management behaviors. Their independent learning and management abilities, along with access to resources, contributed to their success. However, they still faced challenges such as the absence of expert advice and navigating online information. Healthcare professionals can support this group by providing continuous feedback and personalized rehabilitation information.
The passively dependent group, often residing in rural areas with limited resources and severe injuries, exhibited the most negative self-management behaviors. Their behavioral dependency and cognitive passivity, coupled with a lack of self-management skills, made them heavily reliant on others. This group requires multidimensional intervention strategies, including cognitive-behavioral approaches and enhanced self-monitoring skills. Optimizing medical resource allocation and improving access to rehabilitation equipment can also help alleviate their financial burden.
The suffering and conflicted group, mainly consisting of females, demonstrated cognitive-behavioral fragmentation in their self-management behaviors. While they understood the importance of symptom management, external factors often interfered with their adherence. This group's social needs and sense of shame created a conflict, as they wanted help but feared burdening others. Healthcare professionals should provide psychological support and help patients develop positive outlooks to facilitate their transition to the autonomy-driven group. Regular patient exchange activities and professional psychological guidance can further enhance their self-efficacy and emotional regulation skills.
In conclusion, this study highlights the heterogeneous experiences of SCI patients with self-management at home. By understanding their unique needs and challenges, healthcare professionals can develop tailored interventions and support systems. The patient persona technology, combined with precision nursing and locus of control theory, offers a promising approach to improving the self-management abilities and long-term outcomes of SCI patients undergoing home rehabilitation.
