Siblings and family members of children with cancer: The impact of H1N1 visiting restrictions

Background: Each year, 12,500 U.S. children are diagnosed with cancer, and their siblings have specific psychosocial needs to cope with this family upheaval. The emergence of H1N1 further complicates life for siblings. The CDC reports that 1 in 6 Americans had contracted the H1N1 virus, with 7,880 to 16,460 deaths. To minimize risk and spread of infectious disease, and to protect vulnerable immune-compromised patients, health care institutions implemented strict visitation policy restrictions. Methods: Quantitative and qualitative survey data were collected from 228 families (thus far) within 3 years of cancer diagnosis via a cross-sectional national survey of 2880 families. Results: Preliminary results from closed and open-ended questions describe visitation restrictions as resulting in more children being left unattended at home (23%), fewer and shorter parental hospital visits (32.5%), adapted work schedules (19%), additional child care costs (16%), complex child care logistics (98%) and emotional toll on family members (49% patient, 66.2% parent, 56% siblings). Qualitative data enrich these findings. Conclusions: Findings indicate that these policies have exacerbated the psychosocial, economic and functional impact on siblings, parents and pediatric cancer patients. In the face of H1N1, we must change the culture of oncology care to ensure integrated, ongoing family support, particularly during current and anticipated future H1N1/influenza restrictions. Public and community-based organizations and professionals must be prepared to augment existing family support, using technology, special lodging and visitation accommodations, additional logistics and specific supportive care services to minimize risk while optimizing family healing.