Cancer Research Recruitment Interview Guide

Abstract

The Cancer Research Recruitment Interview Guide (Norbäck et al., 2023) is a specialized, 13-item semi-structured interview instrument. It was developed to systematically assess the complex ethical concerns encountered by healthcare professionals when recruiting children with cancer for participation in research studies. The instrument was primarily utilized in a Swedish context, targeting key informants such as physicians and nurses.

The guide employs 13 open-ended items designed to elicit detailed narratives, encouraging participants to describe concrete situations, experiences, thoughts, and feelings related to the recruitment process. Interviews typically lasted between 40 and 52 minutes, with a mean duration of 46 minutes. Notably, the original validation study did not report formal data on the reliability or validity of the interview items, consistent with its primary function as a qualitative data collection tool.

Keywords

Attitudes, Children with Cancer, Ethical Concerns, Healthcare Professionals, Research Ethics, Semi-Structured Interview, Bioethics, Pediatric Oncology, Recruitment Challenges, Sweden.

Authors

Norbäck, Kajsa, Höglund, Anna T., Godskesen, Tove, Frygner-Holm, Sara

Purpose

The principal objective of the Cancer Research Recruitment Interview Guide is to provide a comprehensive framework for exploring the ethical values, dilemmas, and practical challenges inherent in recruiting seriously ill pediatric patients—specifically children with cancer—into research trials. This exploration is conducted from the unique perspectives and experiences of the professionals tasked with this sensitive responsibility.

This semi-structured interview methodology allows researchers to capture rich, nuanced data regarding the subjective experiences of healthcare professionals (physicians and nurses). By focusing on the Swedish context, the instrument helps delineate specific cultural and institutional factors influencing the ethical landscape of pediatric research recruitment.

Construct

The instrument measures the complex construct of Ethical Perceptions and Experiences in Pediatric Research Recruitment. This construct is qualitatively assessed across three main thematic areas, designed to capture the full scope of the recruitment challenge:

• Invitation and Information: Focuses on optimal communication strategies, challenges, and perceived ease/difficulty when presenting research participation to children and their parents.
• Consent and Assent: Addresses the perceived roles of parents and children in the decision-making process, focusing on the difficulties and successes in obtaining meaningful informed consent and child assent in vulnerable populations.
• Ethical Competence and Support: Evaluates the self-assessed skills, knowledge, institutional support, and frequency of ethical discussions among staff handling these ethically sensitive recruitment situations.

Validity

No formal quantitative data regarding the validity (e.g., content validity index, construct validity) of the Cancer Research Recruitment Interview Guide items were reported in the foundational study (Norbäck et al., 2023). Given its nature as a qualitative assessment tool intended for exploratory research, its primary validation relies on the depth and relevance of the descriptive data it elicits, ensuring strong contextual relevance and face validity of the content.

Reliability

As a qualitative, open-ended interview instrument designed for in-depth exploration, traditional psychometric reliability statistics (such as internal consistency or test-retest reliability) were neither applicable nor reported. Reliability in this methodological context is typically established through rigorous qualitative procedures, including transparent data collection, detailed transcription, and consistency checks in coding and thematic analysis among researchers.

Factor Analysis

No data related to factor analysis is available. Since this instrument is a qualitative interview guide designed to explore subjective experiences and perceptions across predefined thematic areas rather than a quantitative scale intended to measure latent factors, factor analysis is not a relevant component of its methodological assessment.

Instrument

Test Type: Original

Format: Item responses are open-ended, collected via semi-structured interview, encouraging narrative responses and concrete examples.

Language Available: English

Population Group: Human; Male; Female

Age Group: Adulthood (18 yrs & older)

Population Details: The sample population consisted of healthcare professionals (physicians and nurses) involved in pediatric oncology and research recruitment, specifically within the Swedish healthcare context. The respondents encompassed both male and female gender identities.

Test Methodology: Qualitative Assessment Methods, specifically utilizing a semi-structured interview approach to gather rich experiential data from key informants.

Keywords

Bioethics, Experimental Ethics, Experimental Subjects, Health Personnel Attitudes, Experimental Recruitment, Treatment Process and Outcome Measures, Semi-Structured Interview, Health Care Personnel Measures, Childhood Neoplasms, Informed Consent.

Authors

Author ORCID Identifier: Godskesen, Tove: http://orcid.org/0000-0001-6011-6740

Affiliation Email addresses: Norbäck, Kajsa: [email protected]

Correspondence Address: Norbäck, Kajsa: Centre for Research Ethics & Bioethics, Department of Public Health and Caring Sciences, Box 564, Uppsala, Sweden, SE-751 22, [email protected]

Permissions & Fee and Test Year

Permissions: The instrument may be used for Research/Teaching purposes.

Fee: No fee is required for the use of this interview guide.

Test Year: The instrument was developed and initially utilized in 2023.

Reference’s

Norbäck, K., Höglund, A. T., Godskesen, T., & Frygner-Holm, S. (2023). Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals’ perceptions and experiences. BMC Medical Ethics, 24(1), Article 23. https://doi.org/10.1186/s12910-023-00901-4

Items of the Cancer Research Recruitment Interview Guide

IMPORTANT: The following scale items must be preserved in their original language and must not be changed in any way.

This interview guide consists of 13 open-ended items designed to probe experiences and perspectives concerning the recruitment of children with cancer into research studies. The items are structured around three core topics:

Topic I: Invitation and Information

• What do you think is particularly important when you ask and inform children with cancer and their parents about participating in studies?

• Are there times when it feels difficult or ethically problematic to ask and inform, or when you feel unsure?

• Are there times when, on the contrary, it feels easy and convenient to ask and inform families?

Topic II: Consent and Assent

• What role do parents usually play in the decision to participate?

• How involved do children tend to be in the decision and consent process?

• How do you see your own role in the informed consent process?

• Have you ever felt that it would be ethically problematic to include a child in a study?

Topic III: Ethical Competence and Ethical Support

• What kind of particular competence, such as skills and abilities, knowledge or experience, do you think one needs to be able to recruit sick children in a good and ethical way?

• Would you say that you generally feel confident that you have the competence to handle challenging situations in your work with recruiting sick children?

• How regularly do you discuss ethical issues at your workplace? What about research ethics? Are there any obstacles to discussing ethical questions? Do you get the ethical support and guidance that you need?