The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

A spinal cord injury (SCI) profoundly changes a person’s life, often necessitating long-term support with daily activities and complex self-management tasks. Family members frequently provide this support, which is essential for quality of life and participation in society for people with SCI. Prior research in other chronic conditions (e.g., cancer, Alzheimer’s disease, Parkinson’s disease) shows caregiving can disrupt caregivers’ professional, social, and family lives, and contribute to burden. In SCI specifically, reviews report high levels of caregiver burden, depression and anxiety, physical symptoms, reduced life satisfaction, isolation, and loss of identity. SCI caregiving can last decades due to increased life expectancy and often begins in early-middle age, distinguishing it from other conditions. Recognizing caregiving as an evolving experience shaped by contextual and relational factors, this study aims to explore the lived experience of SCI caregivers, focusing on the challenges they face over time and assessing how these evolve as routines and needs change.

The paper situates its inquiry within literature showing that caregiving frequently disrupts caregivers’ lives across chronic conditions, affecting professional, social, and familial roles. In SCI, recent reviews have documented high burden, depression, anxiety, physical symptoms, reduced life satisfaction, feelings of isolation, and loss of identity among caregivers. The distinctive longevity of SCI caregiving and earlier age at role assumption may exacerbate these impacts. Prior SCI research has emphasized caregiver burden, its predictors, and health impacts; the present study extends this by examining how the caregiving role evolves over time and the phases and challenges characterizing that evolution.

Design: Qualitative exploratory study conducted in Switzerland as part of a larger project on informal caregivers of people with SCI. Sampling and recruitment: Potential participants were identified via people with SCI from the Swiss Spinal Cord Injury Cohort Study address lists, cross-referenced with the Swiss Paraplegic Association membership database and the four SCI-specialized clinics’ patient databases. Individuals with SCI were asked to pass a survey to their primary family caregiver. Caregivers who completed the survey (N=717) could indicate interest in an interview; those indicating availability formed the pool for purposive sampling. Inclusion criteria: Age >18 years; fluent in a Swiss official language (French, German, or Italian); providing ≥10 hours/week of care to a family member with SCI who had been a wheelchair user for at least 4 years; perceived high or low caregiving burden (from survey). Sampling also considered caregiver and care recipient gender and age, linguistic region, caregiver–recipient relationship (partner, parent, adult child), financial expenditures due to caregiving, and caregiving years to maximize perspective diversity. Recruitment procedure: Contact via preferred method (phone or email). Attempts ceased after three unanswered calls at different times or two unanswered reminders. Participation was voluntary with written informed consent. Study aims and participation details were provided prior to scheduling; key consent points were reiterated and the consent form signed on interview day. Data collection: Audio-recorded, semi-structured interviews conducted by the first author and a trained research assistant in the participant’s preferred language (German, French, or Italian) and chosen location (home, workplace, bar). An interview guide covered experiences of caregiving, evolution over time, negative and positive aspects, coping strategies, support needs, and suggestions. Three pilot interviews tested and refined wording; these were included in analysis. Interviewers kept field diaries (analytic notes, interpretations, emotions, and procedural reflections). Data analysis: Interviews averaged 70 minutes (SD=33), were transcribed verbatim, and analyzed using thematic analysis with both deductive and inductive phases. Initial deductive coding was performed on six interviews by the first author (and on three each by two other researchers), followed by meetings to compare coding and resolve disagreements; a similar process was used for inductive coding. Constant comparison ensured thematic homogeneity and distinctiveness; thematic saturation was reached. Trustworthiness strategies included documentation of researchers’ reflections, regular informal peer debriefings, investigator triangulation (checking preliminary findings against raw data), and an audit trail of decisions (themes, labels). Analyses were conducted in the original languages; excerpts were translated only for publication. MAXQDA (Release 12.2.0) supported data organization and storage.

- Sample characteristics: 22 caregivers participated (16 women), mean age 61 years (SD=10.4), average caregiving duration 18 years (SD=13.5). Most were life partners of the care recipient (n=15). Care recipient injury types spanned paraplegia and tetraplegia. - Two-phase trajectory of caregiving experience: 1) Phase 1: Becoming a caregiver. Typically coinciding with the period after the care recipient’s initial rehabilitation discharge (though sometimes later, e.g., when partners formed post-injury). This phase involved adjusting to the role, marked by shock at the permanence of disability, managing expectations for recovery, and a strong sense of feeling unprepared due to limited information, training, and guidance. Participants perceived the healthcare focus was primarily on the patient, with insufficient preparation for the “lifetime job” of caregiving. 2) Phase 2: Lifelong caregiving. After establishing routines, caregivers faced recurrent, evolving challenges requiring ongoing adjustments. Central issues included balancing caregiving demands with personal life, often prioritizing caregiving over personal wishes, negotiating tasks and workload, and maintaining fixed routines structured around the care recipient’s needs (e.g., bladder/bowel management, pressure injury prevention). - Motivations and pathways into caregiving: Many saw caregiving as a natural consequence of relationship norms and reciprocity (partners, parents), rooted in social expectations and personal dispositions to help. Some preferred to protect privacy and avoid external homecare intrusions. Others “slipped into” caregiving due to life circumstances (e.g., being available, having nursing training), lack of suitable assisted living options (especially for younger individuals), or explicit expectations from the care recipient or family. - Cross-cutting systemic challenges in both phases: Inadequate or inappropriate housing for accessibility needs, financial uncertainty associated with long-term caregiving, and burdensome bureaucracy. Caregivers continually adapted to life changes and emerging needs to sustain care at home. - Life adaptations: Caregivers frequently modified professional, social, and family domains (e.g., reduced work hours, fewer social activities, relocating when homes could not be adapted) to accommodate caregiving, even when the role began years after SCI onset.

The study addressed its objective by revealing caregiving in SCI as an evolving, two-phase experience with distinct and recurrent challenges. In the initial phase, caregivers grapple with shock, limited preparedness, and the need to rapidly reorganize life, underscoring a gap in caregiver-focused information and training during and after rehabilitation. In the long-term phase, the role entails continual adjustments to balance caregiving with personal and family life, with challenges compounded by structural issues such as housing accessibility, financial uncertainty, and administrative burdens. These findings emphasize that caregiver needs are dynamic rather than static and that support mechanisms must be responsive over time, tailored to relationship contexts and individual preferences (e.g., privacy, use of external services). Recognizing caregivers’ individuality and the phased nature of adaptation can strengthen caregiver–recipient relationships and inform healthcare and social support services aiming to empower informal caregivers across the caregiving trajectory.

Informal caregivers are pivotal to sustaining the health, daily functioning, and social participation of people with SCI. Their role evolves through an initial adjustment phase followed by a lifelong phase marked by recurrent and changing challenges. Support strategies should be flexible and adaptive over time, addressing information and training needs early, and later targeting sustained balance between caregiving and personal life while mitigating systemic barriers (housing, finances, bureaucracy). A functional caregiver–care recipient relationship benefits from acknowledging individual differences and phases of adaptation, which can also be enriching for those involved.