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Whispers from a Hollow Place: Caregiver Experiences Following Childhood Cancer Survival in Lagos State: A Qualitative
A M Akinsete1, U O Fakile2, O Adisa2
1Department of Paediatrics, College of Medicine, University of Lagos, Idi Araba, Lagos, Nigeria.
Background:
As childhood cancer survival improves globally, increasing attention is directed toward the emotional and social challenges faced by families, especially caregivers. However, in low- and middle-income countries such as Nigeria, caregivers' coping experiences remain underexplored despite extensive documentation in high-income settings.
Objectives:
To explore the psychosocial and health-related experiences of caregivers of childhood cancer survivors after treatment completion in Lagos, Nigeria, focusing on their coping strategies, emotional responses, and perceived family impact.
Methods:
A qualitative descriptive design was employed, with 15 caregivers of childhood cancer survivors recruited through purposive sampling. Data collection combined semi-structured focus group discussions with standardized assessments, including the Hospital Anxiety and Depression Scale (HADS), the PTSD Checklist for DSM-5 (PCL-5), and the Connor-Davidson Resilience Scale (CD-RISC). Discussions were audio-recorded, transcribed verbatim, and thematically analyzed using Braun and Clarke's six-phase framework.
Results:
The analysis revealed three key themes: (1) Physical Consequences, including loss of employment, reduced work efficiency, and financial hardship; (2) Emotional Strain, marked by symptoms of PTSD, feelings of helplessness, and anxiety about potential relapses; and (3) Social Adjustments, such as improved health-seeking behaviours and stronger family relationships. Among participants, 60% demonstrated high levels of resilience, while 73% showed signs of anxiety, and the same proportion exhibited PTSD-related symptoms. All three male caregivers reported experiencing PTSD symptoms.
Discussion:
Caregivers of childhood cancer survivors in Lagos experience notable physical and emotional strain, including symptoms of anxiety and PTSD. Despite minimal formal support, many adapt through strengthened family ties, improved health practices, and spiritual traditions. These results suggest a need for culturally sensitive, caregiver-focused support within survivorship care. Further research should guide the development of targeted interventions in low-resource settings.
Conclusion:
Caregivers of childhood cancer survivors in Lagos continue to experience significant psychosocial burdens beyond active treatment. There is an urgent need for structured psychosocial support integrated into survivorship care plans, especially in LMIC contexts.
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