LIBR 596 at PedPalASCNET

Name of Organization
4480 Oak St – BC Children’s Hospital
Vancouver, British Columbia V6H3V4
Map It
Supervising Librarian/Archivist
Colleen Pawliuk
(604) 875-5340
Purpose of the project:

Pediatric palliative care is focused on relief of the symptoms, suffering, and stress associated with serious illness in a child. The principal goal is to enhance quality of life (QOL) for both the child and family. While pediatric palliative care is relevant for all children with cancer from the time of diagnosis, QOL may become the primary focus of care when a child has advanced cancer and is nearing the end of life, even if cancer-directed treatments are still being provided. The ability to assess and monitor the impact of interventions aimed at enhancing QOL for this population, both from a clinical and research perspective, is hindered by the lack of a reliable and valid tool to measure QOL.

The initial development stages are critical to creation of a reliable and valid tool. Therefore, our primary study objective is to develop a conceptual framework of QOL in advanced childhood cancer that is based on the perspectives of children with advanced cancer and parents of such children. Our research question is: What are the domains and indicators of QOL for children with advanced cancer? The framework will be used in subsequent studies to guide development of a new QOL measure specific to children with advanced cancer. A well-developed QOL measure for this population not only will facilitate future research on the effectiveness of interventions designed to enhance QOL but also can be used in clinical practice to assess current health or disease status, inform treatment decisions, and promote enhanced communication and shared decision-making.

To inform a conceptual framework of QOL we will undertake 1) a metasynthesis of published qualitative research or single case studies focused on sharing the voice of children with advanced cancer, and 2) a systematic search and synthesis of social media where children with advanced cancer have written blogs or shared their experiences through videos, podcasts, or other media

Summary of activities required to carry out the project:

This project consists of two separate stages that will be used to inform the proposed framework development. The student may chose which stage they would prefer to undertake, based on their interest and experience.

1) Metasynthesis of qualitative research. While systematic reviews of existing quantitative research have been completed about QOL, there has not been a systematic search and synthesis of qualitative research that gives voice to children with advanced cancer. We will work with an experienced librarian to conduct a systematic search across five key databases (Medline, CINAHL, PsychInfo, EMBASE, Scopus) to identify qualitative research that provides children’s views of their experience as they face death from cancer. Potential titles and abstracts will be screened independently by two reviewers, then the full texts of retained articles will be reviewed by two team members to identify relevant papers. Two members of the research team will complete a content analysis on the findings from relevant papers to synthesize the results into potential domains and indicators of QOL.

2) Synthesis of social media. Examination of social media to gather the patient’s perspective as part of developing a new PROM has recently been reported as a method that can help to identify a greater breadth of experiences than can be identified through interviews alone. However, this secondary analysis is limited by the lack of opportunity to probe for additional information on concepts raised by the child. Thus, researchers suggest completing the synthesis of social media data first and then exploring identified concepts in further detail as part of the interview process when confirming the hypothesized framework. We will work with an experienced librarian to structure a search for publicly available videos, blogs, and/or podcasts through specific platforms such as Facebook, YouTube, Vimeo, Dailymotion, and SickBoy Podcasts as well as more broadly using Google. We will identify videos, blogs and podcasts that include children with cancer age 18 years or less sharing their experiences as they face death. As our focus is on understanding the child’s point of view, we will exclude videos, blogs, and podcasts that provide parents’ views of children’s experiences. Each potentially relevant item will be reviewed by at least two members of the research team for relevance to our objective and inclusion criteria. The relevant items will be imported to a qualitative software package, Nvivo Pro, which has the specific capability of handing a variety of life formats including images, videos, and social media sources. Two team members will review all of the retained items using NVivo Pro to facilitate organization of data, data analysis, and model building to identify potential domains and indicators of QOL. The ages and cancer diagnoses of the children involved will be documented when examining the available qualitative research and social media sources to enable us to assess whether we have obtained the views of children with advanced cancer across a range of ages and diversity of diagnoses.

Expectations of the end result of the project, for both host and student:

In both stages the student will gain experience in expert searching, research methods and new research tools The host will benefit from the student’s collaboration with this project.

To learn more about PedPalASCNET you can visit our website:

Time periods in which the project could be supervised:
  • Winter Term 2 (January – April)
Is there a deadline by which the project must be completed?
This project does not have a set deadline, but we are hoping to complete one of the stages in a term.
Suggested coursework (pre-requisites or co-requisites)
Required: Completion of the Core Courses
Recommended: LIBR 534 – Health Information Sources and Services

To apply for this position, complete the online application form including a resume and cover letter.


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