Challenges Conducting Qualitative Psychosocial Research for Adolescent and Young Adult Patients and Survivors

Abstract

The field of adolescent and young adult oncology (AYAO) is developing and evolving, providing fertile ground for debate, discussion, and the exchange of opinions. In the “Controversies” feature of each issue of Journal of Adolescent and Young Adult Oncology, we will pose a key AYAO question to people from various organizations, geographical locations, and professions.

In this issue, we asked respondents about the challenges they encounter conducting qualitative psychosocial research for AYA patients and survivors.

—Editors

I personally encounter two types of difficulties when conducting psychosocial research with AYAs. The first one relates to methodology and the second to funding and publication opportunities.

Regarding methodology, the aspects I mostly struggle with concern the design of questions sensitive to the developmental, existential, and psychosocial realities of AYAs while maintaining “scientific rigor” or standardization in the process of questioning across subjects interviewed individually. Due to the varying age-related degree of maturity from one AYA to another with respect to their perceptual, introspective, and expressive abilities, my challenge lies in trying to obtain a detailed narrative following a previously defined set of open-ended questions with as little prompting or guidance as possible. For example, while some may elaborate on their experiences with cancer, other AYAs may struggle not only to self-reflect but also to verbalize about their inner cognitive, emotional, or existential processing of these experiences. Furthermore, an additional challenge I face concerns the analysis and determination of information that appears impertinent or unrelated to the question being asked. For example, I find that some AYAs that are not familiar or experienced with open-ended, introspective questioning often have difficulties staying on task and have a tendency to provide tangential responses to questions.

The other challenge I find myself struggling with concerns ongoing problems with the recognition of the scientific value of qualitative research, limiting the ability to both obtain funding and get published. For example, I often find that unless I present a study with a mixed-data design integrating qualitative with quantitative methods, the opportunities for funding remain limited in Canada. This seems especially true if I intend to apply to federal or provincial-based research institutes or programs in health, such as the Canadian Institutes of Health Research. The same applies for the scope of journals in which qualitative research can be published. Aside from journals specific to qualitative research, other journals that may be receptive to publishing qualitative research are within the realm of the social sciences, generally within the area of psychosocial oncology. I rarely see qualitative studies published in more medically or clinically oriented journals such as the Journal of Clinical Oncology.