A Reflection from POGO Interlink Nurses
The COVID-19 pandemic transformed our work in such a way that we see, clearer than ever before, how essential traditional home visits are in supporting families through their child’s cancer diagnosis. Currently, virtual visits are the norm and are taking place by phone or on video conferencing platforms like Zoom and the Ontario Telehealth Network. POGO Interlink Nurses are the healthcare team members who connect the family to important hospital and community supports—including school*—so it makes perfect sense that in-home visits are integral to our work. In fact, we rely on these visits to establish a connection with our patients, their siblings and other family members in a more meaningful way and in a safe place, which is especially important for siblings.
But just as important, the home visit is a critical part of determining how the family is doing. Home visits typically allow us to use observation and our assessment expertise to gain greater insight to a family’s circumstances which cannot be duplicated in virtual visits. Being in a family’s environment gives us a glimpse of how their lives are at the time and what added stressors they may have. The broad range of factors, including social, economic, cultural and psychological that influence family coping and their adjustment to a child’s cancer diagnosis can be observed in a home differently from meeting in any other environment.
Family structure, poverty and access to resources can reveal themselves (literally) and avoid the need for us to ask questions that might be misconstrued as “intrusive.” Still, we believe that many parents will share more readily when we are sitting with them in their home. Also, it is during the home visit when we might see that, for example, three family members are sharing the same bed or there is mould growing in the bathroom. We come to better understand that a family might have difficulty getting their ill child to clinic because they do not have access to transportation or there’s an elderly or sick grandparent in the home who cannot be left alone. The home environment provides context for setting up teaching. It can tell us if the family is able to cope with the complexity of home drug administration, like chemotherapy; palliative care for a dying child; or providing supportive care to help prevent and manage any adverse effects of the child’s cancer and its treatment.
Home visits, where we’re all face-to-face, also makes it easier and more efficient to complete and collect documents and application forms. This is especially critical when families have an urgent need to access financial support.
Since COVID-19, we have embraced and adjusted well to virtual visits to bring nursing and psychosocial care to our families, but there are challenges. Seeing a child and assessing their general physical well-being is not easy. We can teach virtually, but our use of teaching aids does not work well from a distance. For example, we can show our teaching dolls, but playing with them in a way that allows mom or dad to become familiar with central line devices is tricky. And though many young parents are embracing virtual care, it is more difficult for those for whom English is a second language or when families have less access to technology.
We anticipate and look forward to home visits because we know they have many benefits for children and youth with cancer and their families.
*This fall, the return to school for children with cancer will require extra support as families navigate the complexity of COVID-19. POGO Interlink Nurses will advocate for specific accommodations for patients unable to return to school, for families who are choosing to opt-out of in-person learning and for those reintegrating into the classroom setting.
This reflection by POGO Interlink Nurses was written in September 2020, in the first few months of the COVID-19 pandemic.