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What is palliative care?
"Palliative care aims to improve quality of life for patients and their families" (Arnold, et al., 2018, p. 3). Another source states,
"Pediatric palliative care is a holistic approach for providing children with physical, mental and psychological care and for supporting the family" (Eshaghian-dorcheh, Zandi, Rassouli, and Tahmasebi, 2019, p. 9482)

What is the problem with palliative care and pediatrics?
One major difficulty is "communication and interactions with the children and their families" (Eshaghian-dorcheh, Zandi, Rassouli, and Tahmasebi, 2019, p. 9490). As I stated previously, palliative care in general is a hard subject for some people but when it comes to pediatrics it becomes even more difficult. Another source addresses the fact that health care professionals have demonstrated difficulty working with "pediatric patients under this care" (Verri, et al., 2019, p. 126).

What is the difference between adult and pediatric palliative care?
For the pediatric population, having a serious illness is not expected. This can lead to shock for the parents while the children may not understand the extent of what is happening to them. This "presents unique challenges in caring for children and their families" because even just letting the diagnosis sink in can take a lot of time and support (Get Palliative Care, 2019). Another difference would be who is making all of the medical decisions. In this population, the parents are making the decisions for the child which presents a different dynamic in caring for the patient (Get Palliative Care, 2019). A third difference would be the types of professionals involved in the patient's care. These are children so people like "a play therapist, child life therapist and/or child behavioral specialist" may be involved (Get Palliative Care, 2019).

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Why is the nurse's role important?
The nurse's role in pediatric palliative care is extremely important. The nurse plays so many roles in this kind of care but one of the biggest roles is being the support for the family. The nurse is very likely to be the person there when the child passes away or soon after the child passes, making them the main emotional support for the family in one of the hardest times of their lives. Being the patient's advocate also makes the nurse's role important due to the interdisciplinary care that is associated with pediatric palliative care (L. Barbaro, personal communication, April 24, 2019). The nurse needs to be able to clearly communicate and stand up for the patient's best interest when convening with the health care team.

What are challenges/barriers to nurses participation?
During my interview with Laurie, I asked what she thought were the challenges/barriers to nurse's participation in pediatric palliative care and her simple answer was "fear" (L. Barbaro, personal communication, April 24, 2019). Many people have an internal emotional conflict with palliative care in general but that feeling is further intensified when talking about the pediatric population.
As mentioned in the literature section, another barrier would be difficulty communicating with patients undergoing palliative care services.

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This interview is with Laurie Balbaro (RN, CHPPN) who is the Clinical Director of patient care at Edmarc. Edmarc is a hospice organization for children located in Portmouth, VA. Edmarc currently provides care to about 80 children and their families and has only a handful of passionate nurses working for them. For this interview, I used the questions from the analysis portion of this project to guide the conversation.

https://edmarc.org/

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1. Initiate education programs on pediatric palliative care, communication with patients undergoing palliative care (and their families) and the outcomes of pediatric palliative care for nursing staff at pediatric hospitals. This would improve the staff's comfort level with this type of patient care. While not every nurse is going to specialize in this type of patient care, many of them will be exposed to it in some manner. This could also bring nurses into this field of nursing once they learn more about it.

2. Increase the amount of course material about palliative care in nursing school. There is currently limited information given to students in school regarding this type of nursing as a whole, but essentially none addressing it in the pediatric population. Giving future nurses more information on this type of nursing could increase overall participation after graduation.

3. Allow pediatric patients that are receiving palliative care to have a primary care team in order to give the patient and the family a sense of stability and comfort. Appropriate nurses could be assigned to this role (nurses who are specifically trained and willing to take on a pediatric palliative care patients) which would overall improve the care of the patient. Primary care teams could allow the nurse to be as knowledgeable as possible about their patients and their needs and overall increase their comfort level with the patient and their families.

4. Get nurses involved in creating pediatric palliative care tools. One idea would be to incorporate music, art, pet therapy, play time, aroma therapy, photography, religion, etc., into the care of the child and their family as deemed appropriate for them by creating a "menu" for them to select from. Aside from tools like this being created by nurses, the activities/tools could facilitate increasing nurse involvement in the every day care of their patients. This idea in particular would give the patient outlets for their emotions, give the family memories with the child (possibly even things created by the child with the art option), and allow the child/family some choices (giving them some control over daily activities).

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What is the problem?
Palliative care in the pediatric population is not a topic easily discussed because many people shy away from it. No one wants to think about a child passing away which leads to fear of this topic in many cases. The main issue with palliative care in the pediatric population is the lack of understanding of it and the difficultly that comes along with caring for these patients.

Who is directly affected?
The patient's diagnosed with life threatening or life limiting illnesses are directly affected. The lives of these patient's families are also permanently altered.

How?
Patients and families that are dealing with pediatric palliative care are affected financially, emotionally, and physically.

Where?
Pediatric palliative care can occur in "patients’ homes, residential hospices, clinics, long-term and skilled care facilities, and acute in-patient facilities" (Schroeder and Lorenz, 2018, p. 5).

When and Why?
Palliative care occurs when curative treatment is no longer an option for a patient with life threatening or life limiting illness. Palliative care helps to alleviate symptoms that make the patient uncomfortable in order to improve their quality of life.

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Holistic care has been a staple of the SCOHS curriculum. Holistic care involves caring for the mind, body, spirit and is a major concept associated with various nursing theories such as Jean Watson's theory of Human Caring (on which I did a Nursing Theory assignment on). In palliative care for the pediatric population, the idea of holistic care is possibly the most important aspect because the nurse is truly there to support the patient and keep them comfortable in their last days. The nurse is also providing this care to the patient's family. The concept of holistic care prepares me to be a leader because my understanding of it will help me to advocate for my patients in the most effective, helpful manner. My knowledge of it could also be beneficial to other health care professionals that have questions about it because I would be able to explain it.

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What is the nurse's current role/participation?
The role of the nurse in pediatric palliative care and palliative care in general is extremely complex. According to my interview with Laurie Barbaro, the nurse is often times treating not only the child but the family as well (L. Barbaro, personal communication, April 24, 2018).  The nurse has to be able to clearly communicate with the patient and family, provide care and medications to keep the patient comfortable and provide support to the family while the patient is receiving palliative care and even after the patient has passed away.

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Another concept from SCOHS that I can pull into this topic would be scope of practice. Understanding not only the nurses scope of practice but also that of respiratory therapy, occupational therapy, doctors, assistive personnel, etc., helps nurses understand who is able to do what for their patients and who would need to be contacted as needed. It is important to note that it is "within the nursing scope of practice to thoroughly explain and educate patients and families on symptoms and treatments through the end of life, including medication regimens" because the families served in this population are going to have a lot of questions and concerns that the nurse will need to address (Schroeder and Lorenz, 2018, p. 5).  This will help me as a leader because I will be able to take ownership of my patient's care and assist others with my knowledge of scope of practice.