From Discussions VOL. 11 NO. 2
Interviews of College Students with Siblings Who Have Genetic Diseases
College-students did not want to use their siblings genetic disease as an excuse, but would appreciate some flexibility in due dates of assignments when family crises arose. They did agree, however, that speaking with advisors to potentially make deadline extensions would decrease schoolworkassociated anxiety. Participants suggested a “sibs” weekend that would enable visits by their siblings with genetic diseases. Something that was noteworthy was that, by the engaging interactions of the participants it was shown that a support group would be therapeutic as they shared a common bond. They also expressed conflict regarding getting tested for the genetically linked disease of their sibling. In addition, at the close of the interviews participants agreed they felt more confident to discuss their family circumstances with faculty advisors.
Participants felt that holistic family-based care should include siblings in the delivery of nursing interventions. The two main opinions expressed by the participants were the nurses needed to increase communication and acknowledge the siblings’ presence (Box 1). Nurses also need to remember that there are multiple resources to utilize, such as child life, pastoral care, social work, or psychology.
Early hospital experiences by siblings of patients who have a genetic disease appear to remain fixed in their memories and as college-students their role has evolved to be an active member of that siblings’ caregiver team. These family demands surface to affect their college experience and may impact the stages of development that need to be achieved by this age group to reach healthy adulthood. It is hoped that the results of this pilot study will increase nursing awareness of the needs of siblings, as well as help the University learn how to support these students who have similar life experiences by developing new supportive programs. Through dissemination, these programming endeavors can then be shared with other university campuses. Future research could include conducting similar focus groups with larger, more diverse samples along with improved recruitment strategies.
The writers thank the editors of the Discussions magazine for the opportunity to revise the manuscript and to resubmit. It has been shortened for better flow and momentum of the research story that is being told, but none of the research has been lost. Also, possible replication of information was removed to avoid redundancy. The authors of this project feel that it is very important to share, especially with those in the college community.
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