A Qualitative Case Study of the Experiences of Children With Cancer as They Learn About Their Diagnosis and Treatment
| Status: | Completed |
|---|---|
| Conditions: | Cancer |
| Therapuetic Areas: | Oncology |
| Healthy: | No |
| Age Range: | 7 - 11 |
| Updated: | 4/21/2016 |
| Start Date: | January 2014 |
| End Date: | October 2015 |
Thousands of children are diagnosed with cancer each year, many of whom will achieve long
term survival due to advances in treatments and technologies. However, when a child is first
diagnosed, they are confronted with a wealth of new and unfamiliar medical information that
they must integrate in order to understand their diagnosis and treatment plan. Little is yet
known about how children with cancer experience learning about their diagnosis and treatment
in the hospital setting, or the individuals and materials that may help to facilitate the
child's developing understanding. This information could help to identify or guide
educational and supportive child life interventions to help children with cancer better
understand their illness and its treatment.
This observational study will collect data about how children currently learn about their
cancer diagnosis and treatment in the hospital setting. The interventions used do not seek
to change the health outcomes of the participants in this study. The observational data
collected may serve to improve how future patients learn about their cancer-related
diagnosis.
term survival due to advances in treatments and technologies. However, when a child is first
diagnosed, they are confronted with a wealth of new and unfamiliar medical information that
they must integrate in order to understand their diagnosis and treatment plan. Little is yet
known about how children with cancer experience learning about their diagnosis and treatment
in the hospital setting, or the individuals and materials that may help to facilitate the
child's developing understanding. This information could help to identify or guide
educational and supportive child life interventions to help children with cancer better
understand their illness and its treatment.
This observational study will collect data about how children currently learn about their
cancer diagnosis and treatment in the hospital setting. The interventions used do not seek
to change the health outcomes of the participants in this study. The observational data
collected may serve to improve how future patients learn about their cancer-related
diagnosis.
This is a longitudinal qualitative case study, and no randomized interventions will be used.
Instead, participants will complete two interview sessions, three guided activities, and
observations with the primary investigator to explore their experiences of learning about
their diagnosis and treatment in the hospital setting.
PRIMARY OBJECTIVE:
- The primary objective of this qualitative case study is to describe the ways in which
children with cancer learn about their cancer diagnosis and treatment in the hospital
setting.
Instead, participants will complete two interview sessions, three guided activities, and
observations with the primary investigator to explore their experiences of learning about
their diagnosis and treatment in the hospital setting.
PRIMARY OBJECTIVE:
- The primary objective of this qualitative case study is to describe the ways in which
children with cancer learn about their cancer diagnosis and treatment in the hospital
setting.
Inclusion Criteria:
- The child is between the ages of 7 and 11 years on the day of their initial arrival
to the hospital
- The child has a working diagnosis or initial diagnosis of a bone or soft tissue
sarcoma that will require multimodal therapy to include chemotherapy, plus or minus
surgical resection, plus or minus radiation therapy.
- Both the child and parents speak English as their primary language
- Parents are willing to give consent and child is willing to give assent
Exclusion Criteria:
- The child has a pre-existing, documented learning disability or cognitive impairment
and has previously received learning accommodations under an individualized education
plan (IEP).
- The child has a pre-existing, documented diagnosis of autism spectrum disorder
(including autism and Asperger's disorder).
- Child has previously received treatment for a cancer diagnosis either at St. Jude or
another institution.
- Parent and/or child are unwilling or unable to give consent/assent.
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