Commentary By: Sharon Hou, PhD, RPsych – Faculty of Education, Simon Fraser University; BC Children’s Hospital
Dr. Sharon Hou (she/her) is an Assistant Professor in the Faculty of Education at Simon Fraser University and a Registered Psychologist at BC Children’s Hospital. Dr. Hou’s clinical and research interests are on advancing diversity and health equity in children’s health and well-being.
Feature Article
Needle, J., Sey, L., Ahmed, A., Batres, R., Jinhee, C., de la Parra, P., Pergament, S., & Culhane-Pera, K. A. (2024). “We Feel Alone and Not Listened To”: Parents’ Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities. Annals of Family Medicine, 22, 3.
Commentary
Needle and colleagues (2024) conducted a study to better understand the perspectives of parents of children with serious illness who are from Somali, Hmong, and Latin-American communities in Minnesota, United States. The goal of this research was to identify barriers to receiving quality care and offer ways to improve the care experiences for these families. The research team used a community-based participatory research (CBPR) approach, which means that they co-conducted their project with community partners who were involved over the course of the study process. As part of the recruitment strategy, research team members spoke to interested people in their preferred language, which included Hmong, Somali, Spanish, or English, regarding the study. This reflects a strength of applying a CBPR approach and builds trust in the researcher-participant relationship, particularly pertinent to working with underrepresented groups.
The research team interviewed 26 parents of children with serious illness. Results were comprised three major themes: Participants spoke about the importance of having an informed and clear understanding of their child’s illness; the importance of compassionate interactions with healthcare teams; and that feeling heard and respected by the healthcare team was necessary to build a trusting relationship with the healthcare team. Parents also spoke of additional challenges in caring for their child with serious illness within a complex healthcare system, including language barriers, underlying mistrust in clinicians and systems, and historical and current experiences with racism – as exemplified by an illustrative quote from a parent participant: ““…we feel alone and not listened to, like you did not exist, because of our language or our race” (p. 218). Based on these findings, the research team offered a set of recommendations for healthcare staff and systems that can support the care of children with serious illness and their families.
At its core, I believe that culture affects the way we think, feel, and perceive the world. This perspective has been the bedrock of my research and clinical endeavours. I have a vested interest in highlighting the voices of underrepresented and underserved individuals and groups, and capturing the influences and interaction of culture and illness of children with serious and life-threatening illnesses. This study is an example of such undertaking, and I appreciate the research team’s efforts to make research more accessible; for example, by addressing linguistic barriers to recruitment approaches and co-researching with people that bring lived and living experiences.
Similar to the sentiments shared by Dr. Rosenberg in their commentary1, I value curiosity, authenticity, and open-mindedness when I seek to understand cultural influences. I worry that we sometimes assume cultural causation, which risks obscuring, invalidating, and oversimplifying people’s unique experiences when, in fact, research that elucidates the role of culture and illness is an opportunity for us to understand strengths and resiliencies in people and communities.
As a psychologist, I care deeply about providing culturally responsive care to the children and families that I see in my practice. How does your cultural identity make a difference to understanding your child’s illness? How does your cultural values influence the way you cope as a family? These are some of the questions that I explore with families of children with complex care needs to more deeply understand how I can personalize the care we deliver to them. Ultimately, I believe we have more similarities than differences and that our efforts to learn from one another will help us weave diversity into a standard of inclusive and equitable child healthcare.
References
- Rosenberg, A. R. (2025, June 5). Trends in Palliative Care Research 2024; Issue #05. Trends in Pediatric Palliative Care Research. https://pediatricpalliative.com/trends-in-palliative-care-research-2024-issue-05/
View the 2024 Issue #7 Citation List in Library