An Exploration of Sarcoma From The Perspective Of Adolescents and Young Adults, Parents, and Providers
Location
DeSantis Room 1047
Format Type
Plenary
Format Type
Paper
Start Date
16-1-2020 8:45 AM
End Date
16-1-2020 9:05 AM
Abstract
Background: Approximately 70,000 adolescents and young adults (AYA) are diagnosed with cancer each year in the United States. Sarcomas, which carry a particularly high symptom burden, are some of the most common cancers among AYA. Recent work has documented significant levels of unmet needs among AYA with cancer, particularly the need for psychosocial support.
Objectives: To explore the experience of living with sarcoma from the perspective of AYA, parents of adolescents with sarcoma, and providers who care for AYA with sarcoma.
Methods: Our overall qualitative approach was deductive, informed by the Resilience in Illness Model (RIM) that describes five factors associated with resilience in AYA with cancer. Semi-structured interviews were conducted with 10 AYA, parents of five of the adolescents, and six health care providers. The research team developed a coding structure based on the interview guide, with each factor in the RIM model represented. Three research team members coded the interview transcripts in duplicate and discrepancies were resolved with discussion. Two members of the team independently reviewed data associated with each code and met weekly to discuss emerging themes, ending the discussion when three to five themes were agreed upon.
Results: We identified themes associated with each of the psychosocial factors associated with resilience in AYA with cancer identified in the RIM (ie, spiritual perspective, social integration, family environment, coping skills, and hope-derived meaning).
Conclusions: Our results help to highlight the experience of sarcoma from the perspective of AYA, parents, and providers who care for AYA with sarcoma.
Keywords
cancer; adolescents; young adults; interviews
An Exploration of Sarcoma From The Perspective Of Adolescents and Young Adults, Parents, and Providers
DeSantis Room 1047
Background: Approximately 70,000 adolescents and young adults (AYA) are diagnosed with cancer each year in the United States. Sarcomas, which carry a particularly high symptom burden, are some of the most common cancers among AYA. Recent work has documented significant levels of unmet needs among AYA with cancer, particularly the need for psychosocial support.
Objectives: To explore the experience of living with sarcoma from the perspective of AYA, parents of adolescents with sarcoma, and providers who care for AYA with sarcoma.
Methods: Our overall qualitative approach was deductive, informed by the Resilience in Illness Model (RIM) that describes five factors associated with resilience in AYA with cancer. Semi-structured interviews were conducted with 10 AYA, parents of five of the adolescents, and six health care providers. The research team developed a coding structure based on the interview guide, with each factor in the RIM model represented. Three research team members coded the interview transcripts in duplicate and discrepancies were resolved with discussion. Two members of the team independently reviewed data associated with each code and met weekly to discuss emerging themes, ending the discussion when three to five themes were agreed upon.
Results: We identified themes associated with each of the psychosocial factors associated with resilience in AYA with cancer identified in the RIM (ie, spiritual perspective, social integration, family environment, coping skills, and hope-derived meaning).
Conclusions: Our results help to highlight the experience of sarcoma from the perspective of AYA, parents, and providers who care for AYA with sarcoma.
Comments
Is this submission based off a previously submitted paper?
To answer more fully, these research findings have not been published; however, results from the larger intervention study have been published.