It's More Difficult..'

Clinicians' Experience Providing Palliative Care to Adolescents and Young Adults Diagnosed With Advanced Cancer

Jonathan Avery, PhD; Arielle Geist; Norma Mammone D'Agostino, PhD; Sarah K. Kawaguchi, MD; Ramona Mahtani, MD; Paolo Mazzotta, MD, MSc; Pamela J. Mosher, MD, MDiv; Ahmed al-Awamer, MBBS, MHSc; Alisha Kassam, MD, MPH; Camilla Zimmermann, MD, PhD; Mahsa Samadi, MD; Seline Tam; Amirrtha Srikanthan, MD, MHSc; Abha Gupta, MD, MSc

Disclosures

J Oncol Pract. 2020;16(1):e100-e108. 

In This Article

Methods

A qualitative descriptive design,[15,16] using semistructured interviews and thematic analysis[17] as well as constant comparative analysis and theoretical sampling,[18] was used to explore the experiences of HCPs providing or introducing palliative care of AYAs diagnosed with advanced cancer.

Study Participants and Setting

Study participants included medical oncologists, radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in the treatment and management of AYAs with advanced cancer. These areas of oncology practice were chosen to provide enough heterogeneity across different health professions involved in AYA oncology to capture a range of experiences to increase transferability of findings to other similar professional areas.[19] No distinctions were made between medical oncologist and malignant hematologist.

Study participants were approached from two tertiary hospitals, The Princess Margaret Cancer Centre and The Temmy Latner Centre for Palliative Care (Toronto, Ontario, Canada) after ethics approval was obtained. These two centers are primarily adult hospitals (> 18 years of age) that provide inpatient, outpatient, and community-based palliative and end-of-life care. Convenience sampling was used to recruit participants. Potential participants were contacted through e-mail distribution lists and departmental emails informing staff of the study. Eligibility criteria included having experience (at least one case) either introducing the concept of palliative care to AYAs with advanced cancer and/or being directly involved in the palliative care of the patient, and feeling comfortable talking about these experiences. Ethics approval was obtained from both the University Health Network and Sinai Health Systems research ethics boards.

Data Collection

Semistructured interviews were used as the primary method for data collection. An interview guide was created (Table 1) that established a series of questions and probes to explore HCP experiences delivering palliative care to AYAs. Interviews occurred in person or over the phone by interviewer J.A., after informed consent. In-person interviews took place at the hospital at a prearranged space that provided privacy. Interviews were recorded and lasted approximately 45 to 60 minutes. In addition to these interviews, demographic information for each participant was collected just before the interview, including age, professional field, years of experience, and highest level of education. Participants were coded as P1, P2, and so on.

Data Analysis

Each interview was transcribed verbatim. Thereafter, the Braun and Clarke[17] version of thematic analysis was used as a flexible guide for data analysis. First, each interview transcript was read and notes of initial thoughts taken (by J.A.) to obtain an overall impression of the contents of each interview. Then, each interview was reviewed line by line and/or in segments by J.A. to identify and highlight codes, themes, and categories. Constant comparative analysis was used to identify the most relevant themes emerging from the data. Constant comparative analysis is a method that compares codes, themes, and categories across each individual interview to develop themes that represent each participant's experience.[20] This method provides the analytical ability to treat each participant as an individual and to continuously compare them across different units of data (ie, codes, themes, and categories) to locate and explore similarities and differences. Data analysis occurred concurrently with data collection to use theoretical sampling as a way to explore similarities and differences further and to ensure trustworthiness of the analysis. Theoretical sampling involved asking specific probes during subsequent interviews to confirm emerging insights from previously collected data. To ensure the rigor of this study, the Lincoln and Guba[21] (1985) criteria of credibility, transferability, dependability, and confirmability were used. Techniques used included staying as close as possible to the words used by participants when analyzing the data, holding team meetings to discuss emerging themes to inform the development of the coding framework, and having four interviews independently coded by another member of the research team with experience in qualitative research (N.M.D.) and then discussing with J.A. to resolve discrepancies.

Qualitative data analysis software NVivo 10 (QSR International, Australia) was used to help organize codes, themes, and categories. Data collection and analysis continued until theoretical saturation was reached.

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