Spinal cord injury (SCI) drastically alters lives, necessitating support for daily activities and impacting quality of life. Family members often assume the role of informal caregivers, providing extensive support encompassing mobility, household tasks, and personal care (respiratory, body care, bowel/bladder management, eating/drinking). Research on caregiving in other chronic conditions (cancer, Alzheimer's, Parkinson's) highlights its disruptive impact on caregivers' professional, social, and family lives, leading to caregiver burden, depression, anxiety, physical symptoms, and reduced life satisfaction. In SCI, caregiving can extend for decades due to increased life expectancy and often begins during early-middle age, potentially exacerbating these negative effects. This study aimed to explore the lived experience of SCI caregivers, focusing on the evolving challenges they face, moving beyond the typical focus on caregiver burden to examine the dynamic nature of the caregiver role.

Existing literature demonstrates high levels of burden, depression, anxiety, physical symptoms, and reduced life satisfaction among SCI caregivers. Feelings of isolation and identity loss are also frequently reported. These negative impacts may be amplified by the potentially decades-long duration of caregiving in SCI, often starting during a caregiver's prime working years. The need to better understand the challenges faced by SCI caregivers and improve healthcare system responsiveness to their needs is highlighted. While previous research emphasized caregiver burden, this study uniquely focuses on the evolution of the caregiver role and the multifaceted challenges experienced over time.

This qualitative exploratory study used semi-structured interviews with a purposive sample of 22 SCI caregivers recruited from a larger project involving a quantitative study and a national longitudinal survey of individuals with SCI in Switzerland. Participants (16 women, mean age 61, average 18 years of caregiving) met inclusion criteria: over 18 years old, fluent in an official Swiss language, providing at least 10 hours of weekly care to a family member with SCI using a wheelchair for at least 4 years, and reporting either high or low caregiver burden. Factors such as gender, age, region, relationship to care recipient, financial expenditures, and years of caregiving were considered during sampling to ensure diverse perspectives. Interviews were conducted in the participants' preferred language, audio-recorded, and transcribed verbatim. Thematic analysis, incorporating both deductive and inductive coding, was used. Three researchers independently coded interviews, comparing codes and resolving discrepancies. Investigator triangulation and regular peer debriefings ensured trustworthiness. The software MAXQDA was used for data management.

Analysis revealed two distinct phases in the SCI caregiving experience. The first phase, relatively short, centers on becoming a caregiver, marked by challenges related to adjusting to the new role. These challenges include dealing with the initial shock of the SCI, realizing its permanence, and feeling unprepared for the long-term commitment. Many participants described entering caregiving as a natural consequence of their relationship with the care recipient, driven by social norms, reciprocal expectations, or personal inclination to help. However, in some cases, caregiving began unexpectedly due to circumstances such as unemployment, lack of suitable alternative care options, or the care recipient's expectations. The second phase, lifelong, is characterized by recurring challenges in balancing caregiving responsibilities with personal life. This includes adapting to changes in professional life, social life, and family dynamics (e.g., moving to a more accessible home). These adaptations often lead to routines centered around the care recipient's needs. Throughout both phases, challenges related to housing, financial uncertainties, and bureaucratic processes persistently impacted caregivers. The study also highlighted the lack of information, training, and guidance provided to caregivers, especially during the initial phase, leading to feelings of being unprepared for the long-term commitment.

This study demonstrates the dynamic and multifaceted nature of SCI caregiving, revealing distinct phases with unique challenges. The initial phase underscores the need for improved support and preparation for caregivers, addressing the emotional shock and practical challenges of the sudden role shift. The ongoing challenges in balancing caregiving with personal life highlight the importance of providing resources to promote well-being and prevent burnout. The study's findings have significant implications for healthcare professionals and policy makers, highlighting the need for comprehensive support systems tailored to the evolving needs of SCI caregivers. Such support should acknowledge both the individual circumstances of caregivers and the evolving nature of their tasks. The long-term nature of caregiving in SCI necessitates ongoing assessments and flexible, adaptive support strategies.

This qualitative study provides valuable insights into the lived experience of SCI caregivers, revealing a two-phased process marked by distinct challenges. The initial phase emphasizes the need for better preparation and support during the initial adjustment period, while the lifelong phase highlights the ongoing need for resources to balance caregiving responsibilities with personal well-being. Future research could focus on developing and evaluating specific interventions to address these identified needs, creating more sustainable support systems for SCI caregivers.

The study's sample, while diverse, is limited in size and geographic scope (Switzerland). The findings may not be generalizable to other cultural contexts or healthcare systems. The reliance on self-reported data introduces potential biases, and the qualitative methodology limits the capacity to establish causal relationships between caregiving challenges and outcomes. Future research with larger, more diverse samples and quantitative assessments would further enhance understanding of SCI caregiving experiences.