The purpose of this qualitative descriptive study was to obtain information from adolescent siblings of children with Down syndrome (CWDS) regarding their perceptions of living with a child who has Down syndrome (DS). Twenty-three adolescents between 12 and 19 years of age who lived with a child who had DS and additional health problems including cardiac, endocrine, gastrointestinal, hematological, neurological, and behavioral conditions were interviewed individually. After examining the tape recorded interviews, major themes revealed both positive and negative aspects of living with a child with DS who has major health problems. However, overall the adolescents reflected more positive experiences than negative experiences. In addition, most adolescents interviewed said they would not change anything about their experience. One interesting finding was that most participants did not believe the child with DS would ever live independently, perhaps because of the additional health problems these CWDS have. Information gained from this study provides information for nurses and families to help better understand adolescent sibling perceptions about living with a CWDS so more appropriate and individualized nursing interventions can be provided for siblings and their families. This information can assist nurses in supporting similar families gain better coping skills, learn more about the impact of DS on families, and provide information on stress management and nursing interventions to support family growth and development especially for adolescents who have the added responsibility of caring for and living with a CWDS.

Previous research has started the discussion about the impact of unmet needs on the psychosocial adjustment of well-siblings of children and youth diagnosed with cancer. The purpose of this qualitative study was to retrospectively explore the needs of adolescents who had a brother or sister, who was diagnosed with, treated for and who lived through cancer. The findings and knowledge mobilization project from this study will extend the literature and will also bring information to counsellors, social workers, doctors, nurses, cancer support agencies, parents, family members, friends, teachers, and—importantly—to well-siblings themselves. Narrative data were collected from 7 adult sisters who reflected on their adolescent-aged experience of being the well-sibling of a sister (n=4) or brother (n=3) who was diagnosed with and treated for cancer. Data were analyzed using thematic analysis and 7 need-based themes identified from the data are reported. Further research is recommended, and implications from the present study are discussed. / Graduate / 0519 / 0621 / 0992 / genevievestonebridge@gmail.com