The impact of prolonged disorders of consciousness on family caregivers' quality of life - A scoping review.
Amy Chinner, Ruth Pauli, Damian Cruse
PMID 34085903WHAT IT FOUND
Caregivers of people with prolonged disorders of consciousness face severe practical and emotional burdens, including financial strain, social isolation, and grief without death.
Qualitative studies highlight these lived experiences, which quantitative measures often miss, suggesting support must address daily realities, not just mental health symptoms.
Key findings
01Qualitative research reveals that caregivers experience 'ambiguous loss' or grief without death, struggling with conflicting emotions of sorrow and hope, which is poorly captured by standard quantitative distress measures.
02Caregivers report significant practical burdens, including navigating complex healthcare systems, financial strain from reduced employment, and social isolation, which are more frequently addressed in qualitative than quantitative literature.
03Relationships with medical staff are a key source of stress due to clashing opinions on prognosis and poor communication, with some caregivers developing distrust or avoidance of clinical teams.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
Half of the included articles originated from Italy, limiting the generalizability of findings to other healthcare systems and cultural contexts. The review did not assess the methodological quality of the included studies, so findings from lower-quality sources are weighted equally with high-quality ones. Only English-language articles were included, potentially missing relevant perspectives from non-English speaking regions. Most quantitative studies relied on self-report measures, which may understate the complexity of caregivers' lived experiences compared to qualitative data.
Declared interests
The study was supported by the Medical Research Council (reference: MR/P013228/1). The funder had no role in the design, data collection, analysis, interpretation, or writing of the paper.
The easy way to misread this
Do not assume that low scores on standardized depression or anxiety measures mean a caregiver is coping well. The review found that quantitative measures often miss the profound practical, financial, and relational burdens that qualitative studies reveal, such as the stress of navigating healthcare systems and the grief of 'ambiguous loss'.