Last week was my final week with Richard House. I have absolutely loved my time here in London learning about pediatric hospice in England and the differences between the healthcare systems here and in the United States. This week, I attended the STAR team’s Family Day at the hospice center. This was a day full of fun activities for clients and their families. This work was actually quite similar to what I was doing at my internship back in Farmington Hills this summer, organizing and facilitating activities for the residents who live on our campus.
During the activities, I was able to chat with some of the families. I spoke with one parent who works as a nurse about what I’ve learned during my time here in London. It’s been interesting to hear the stressors that parents experience here and the ways that Richard House and other services help ease the stress of dealing with a disabled or terminally ill child.
My biggest takeaway from this experience is the difference in concerns of the family. For families with ill children here in the UK, the cost of hospital stays, medical equipment and medicine is not as big of a concern, because the NHS and local charities tend to cover most of these costs. Charities and foundations in the country will provide medical equipment and extra funding to families who are in need of assistance. When we complete biopsychosocial assessments in social work practice, we focus on all aspects of the family’s life, including finances, job and housing security, etc. I reflected on how these aspects would be important to understand about families receiving expensive care for their child.
During my time in London, I read a book called The Private Worlds of Dying Children by Myra Bluebond-Langner. This book focused on a study she completed by observing leukemic children in a hospital ward and the social and cultural factors that affected their experiences. The book started with the experiences from the child’s perspective set up in a play format – covering each “character” in the interactions and what the physical space was like. The following chapters explained the observations Bluebond-Langner made during her study and what this meant.
I enjoyed reading this book during my time here, because it gave me the opportunity to connect what I was reading to what I was learning in my internship. In SW 617, we learned about the open awareness of death with children. Bluebond-Langner spoke about the lack of open awareness with her young participants in the study. She stated that “Only two children in my study were able to bring about open awareness” (pg. 220). She spoke about the complex nature of a child death and how many times the parents are in denial of the child’s terminal diagnosis, so they refuse to share this openly with their child.
I think this is an interesting dynamic of pediatric palliative care and working with children and families dealing with life-threatening and terminal illnesses. It is probably one of the most difficult parts of the work, helping parents accept the terminal diagnosis of their child – and it is something that is difficult universally. I look forward to learning more about the palliative care and healthcare in the United Kingdom, as well as the United States as I continue my studies.
Next week, I will be attending a summer camp for kids with life-altering or life-threatening illnesses in the Midlands of England called Over the Wall. This week-long camp allows these kids to challenge themselves, make positive connections with other children similar to them, and learn to define themselves outside of their diagnoses. I am very excited to be volunteering at this camp and I look forward to reflecting on this side of charity work after I return!
Bluebond-Langner, M. (1980). The private worlds of dying children. Princeton University Press.