New Faculty Research Spotlight
“I am currently working on a small qualitative pilot project to interview Native American families who have lost a child or whose child has a life limiting illness.”
I wanted to come to Texas State as it is relatively small compared to other state universities. But more importantly to me, the nursing program has a great reputation in the state. I had met some former TXST students who were excellent mentors to other nursing students in clinical and spoke highly of the nursing program here.
My research interest is pediatric end-of-life issues and palliative care. A major focus of my research relates to a conversation I had several years ago with a mother. I was living on Blackfeet Nation Reservation in Montana and had started a nursing program there. The area was very rural and winters could last for months, hindering travel and the ability to obtain supplies. The nearest pediatric hospital was over 12 hours away and pediatric services in the state were minimal.
There was a small child with a life limiting illness who was being sent home to die. Very few resources were available, especially for children with life limiting diseases. The family was tired and needed help. They had been looking for home health personnel, but with the remoteness of the community, were not having much luck. The mother called the nursing program and spoke with me, asking if any of the nursing students could help her. The child needed tube feedings, medications, and other activities of daily living done for her. She was unable to crawl, walk, or move and was having issues with breathing. Some students did volunteer to offer relief to the parents, but most individuals just did not know what they could do to help. Nothing is more painful for families than caring for a child who is dying. This is made more difficult in areas where resources are not readily available, such as rural areas and tribal lands. In addition, culture and cultural practices are important in caring for these children.
It is easy (as a pediatric end-of-life trainer) to say that so many things could have been done to help this family and others like them during this sacred time in their lives; however, I have not walked in their shoes. To fully understand their journey and what could have helped them during this time, we need to ask the families themselves—as well as to ask what their community could do to help them.
I am currently working on a small qualitative pilot project to interview Native American families who have lost a child or whose child has a life limiting illness. I plan to ask them about their child and which health care and community interventions could have helped to ease their burden (or could still help for children who are ill). COVID-19 has complicated my ability to conduct interviews, but it is important for these conversations to be face-to-face as near as possible. Trust is an important element with these conversations and being able to see my face and body language in person helps to build that trust.
Initially, I will be using phenomenological research methods to gain insight into the experience of these families as they share their stories with me. My hope is that the knowledge I gain from this research will lead to an understanding of how communities can help these families ease their suffering.