Commentary By:
Rozalyn Chok, BC Children’s Hospital, Canada – Rozalyn is a pediatric Hematology/Oncology fellow from Vancouver, British Columbia. Prior to studying medicine, she pursued a piano performance degree at The Juilliard School in New York City. Her clinical and research interests include stem cell transplantation, supportive care, and narrative medicine.
Feature Article
Ananth, P., Lindsay, M., Mun, S., McCollum, S., Shabanova, V., de Oliveira, S., Pitafi, S., Kirch, R., Ma, X., Gross, C. P., Boyden, J. Y., Feudtner, C., & Wolfe, J. (2023). Parent Priorities in End-of-Life Care for Children With Cancer. JAMA Network Open, 6(5), e2313503.
Commentary
As I reviewed the citation list for this month, I was heartened to see several articles focusing on eliciting the experience of bereaved parents. The increasing application of qualitative and patient-centered research in medicine speaks to a growing awareness that we can only truly improve outcomes if we find out what is important to our patients and families. This principle is central to other client-focused industries – hospitality, retail, entertainment – yet often lost in healthcare.
The article by Ananth and colleagues (1) caught my attention because of its ingenious application of decision science to the field of quality improvement. The authors implemented a discrete choice experiment (DCE) design to quantitatively assess parent priorities in end-of-life care for their children with cancer. Parents were asked to assign numeric scores to 28 candidate quality of care attributes identified in a previous qualitative study [Ananth P et al, J Pain Symptom Manage. 2021;62(3):492-502)]. The DCE methodology generated “importance scores” for each quality measure, providing insight into the relative impact of each factor.
One goal of this type of research is to determine high priority measures that can be implemented to improve quality of care. A great strength of the study was its use of a simple user-friendly survey to efficiently generate a prioritized list of quality measures as reported by key stakeholders (i.e. caregivers). I particularly loved the authors’ repeated use of the word “stakeholder”– a term more frequently seen in the corporate realm but one that seems to perfectly describe the unique position of a caregiver in pediatric end-of-life care. However, not all stakeholders were given equal voice in this study: 90.2% of participants self-identified as women and 91.8% as White. All had written and spoken command of English. The authors do cite the racial and gender homogeneity of their population as a limitation and acknowledge the need to explore preferences of a wider diversity of participants.
Ananth and colleagues clearly and succinctly reported their answers to the question “what do parents who lost a child to cancer prioritize in measuring end-of-life care quality?”, which you can read in the full article. However, I found myself bothered by a different question – not so much “what,” but “who.” Who are the parents I am hearing from? Who are we including in research? Whose priorities are we learning about? Who are my stakeholders?
I practice at a pediatric tertiary care center in British Columbia, the most ethnically diverse province in Canada. Nearly 30% of the population has immigrated from a different country, 35% identifying as a visible minority and 6% as Indigenous (Government of Canada, Statistics Canada. “Census Profile, 2021 Census of Population”.). Nearly one third of British Columbians report that English is not their first language. Nearly one third of British Columbians report that English is not their first language. In my interactions with this diverse patient population, my stakeholders, I am constantly reminded of the need to approach all families with curiosity and humility – we cannot know what we don’t know unless we ask.
Funding and promoting research performed in lower resource settings is one way in which we can expand our perspective. There are several articles in this Special edition collection which highlight the experiences of underrepresented groups. Saad Rassam and co-authors (2) used a structured questionnaire to assess parent knowledge, attitudes, and beliefs about palliative care for pediatric oncology patients in Lebanon. The impetus for this study was the dramatic increase in childhood cancer incidence in Lebanon due to migration patterns driven by political instability in the region. An important finding was that only 17% of respondents had ever heard of pediatric palliative care. Alarjeh and colleagues (3) used structured interviews to explore preferences and challenges in communication and information-sharing in children, their caregivers, and healthcare professionals in Jordan, with persons identifying as refugees making up 21% of the study cohort. Interestingly, while the refugee persons did not experience barriers in their ability to understand or be understood, healthcare providers expressed more difficulty communicating with refugee patients and families due to language and cultural differences.
The growing body of literature about patient-reported outcomes should be celebrated, as it represents a shift within the medical community to prioritize the needs of patients. However, it also draws attention to the underrepresentation of certain groups in patient-centered research: barriers such as language, socioeconomic status, lack of time, and level of education are especially heightened in qualitative research due to the nature of the methodology. To provide truly patient-centered care, we must preferentially engage individuals from equity-deserving populations at the bedside, in quality improvement, and qualitative research. We must find a way to amplify the voices that are missing and to hear what is important to all our stakeholders, not just those who are easiest to reach.
References
1. Ananth, P., Lindsay, M., Mun, S., McCollum, S., Shabanova, V., de Oliveira, S., Pitafi, S., Kirch, R., Ma, X., Gross, C. P., Boyden, J. Y., Feudtner, C., & Wolfe, J. (2023). Parent Priorities in End-of-Life Care for Children With Cancer. JAMA Network Open, 6(5), e2313503.
2. Rassam, R. S., Huijer, H. A. S., Noureddine, S., Smith, E. M. L., Wolfe, J., Fares, S., & Abboud, M. R. (2023). Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer. Pediatric Blood and Cancer.
3. Alarjeh, G., Boufkhed, S., Alrjoub, W., Guo, P., Yurdusen, S., Ahmed, F., Abdal-Rahman, M., Alajarmeh, S., Alnassan, A., Al-Awady, S., Kutluk, T., Harding, R., & Shamieh, O. (2023). Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: A qualitative study. Frontiers in Oncology, 13, 1118992.
4. Ananth, P., Mun, S., Reffat, N., Li, R, Sedghi, T., Avery, M., Snaman, J., Gross, C.P., Ma, X., & Wolfe, J. (2021). A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children With Cancer. Journal of Pain and Symptom Management, 62(3): 492-502.
View the 2023 Issue; Special Edition 03 Citation List in Library
View a PDF of the 2023 Issue; Special Edition 03 Citation List