Nurses face a great challenge while providing the best care for children with terminal illness and families to fulfill their physical, psychological, spiritual, and emotional needs in the course of an uncertain and even long-lasting illness [1]. Nurses may be the first to meet with children and families and spend more time than other health workers [2]. End-of-life care for pediatric is holistic care intending to improve the quality of life despite the prognosis [3]. Although the child has been diagnosed with an incurable illness, nursing care must remain active to maintain the child's comfort as well as maintain the quality of life of the child in order to grow as optimally as possible.

Nurses play an important role in caring for the child who is dying and his/her family. Providing care for a dying child is a multidisciplinary and family-centered process. Nurses should acknowledge the physiological, emotional, and spiritual needs of the child and the family during this difficult time. Children show different responses to the imminent process of dying and death, depending on their level of development [2].

According to American Nurses Association (ANA) (2016), nurses are obliged to provide comprehensive and compassionate care for dying children, recognize when the child is about to take his/her last breath and deliver the information to the family [4]. The primary responsibility of a nurse is to provide nursing care to children and families. Nurses should cooperate with family members to identify their goals and needs, and plan the most appropriate interventions to address the problem [1].

Nurses perform several roles when they provide care to clients and often carry out these roles concurrently, not exclusively [5]. The roles of nurses, among others, are as an advocate, health care provider, communicator, member of the team, educator and leader [6]. Providing interventions to reduce suffering and improve quality of life at each and every stage of the illness is the focus of palliative care in children and a multidisciplinary team is the most effective for treatments like this [7]. In a team, nurses enact an essential role by recognizing symptoms, coordinating care, and facilitating communication [7].

Providing end-of-life care for pediatric patients and their families is a privilege and also a challenge for nurses. Helping patients at the end of their life enables nurses to apply many of the technical skills and mental health skills learned throughout the nursing program [6]. A nurse can help parents by providing detailed information about what will happen if the supportive equipment is removed, ensuring that the pain medication given is appropriate for relieving pain during the dying process, and allowing parents to be with their child and talk to him/her before the release of the device. It is important for nurses to attempt to control the environment by providing privacy, asking them if they want to listen to the music, dim the lights and turn down the sound of the monitors, and organize the religious or cultural rituals that the family might want to do [1].

Nurses often perform multiple roles simultaneously. Similarly, when a nurse cares for a child with a terminal illness , the roles needed at any given time depend on the patient’s needs and a particular situation [5]. While caring for a child with a terminal illness, nurses go through many experiences; one of them is related to decision-making. Making end-of-life decisions often involves ethical dilemmas for children, families and other health care teams [2]. The vagueness of the role of health professionals can be a difficult factor in decision making at the patient's end of life [8]. Furthermore, collaboration must be carried out by nurses with other health care teams to ensure optimal management of symptoms and to provide support for patients and families [4]. This study was conducted to identify the roles of nurses in providing nursing care to children with a terminal illness and explore the nurses’ perspectives on how they perform their role in caring for terminally ill children.

Fifteen nurses participated with a minimum bachelor's degree, aged 25-45 years and having the clinical nursing experience of 5-20 years for pediatric patients (Table 1).

The results of the data analysis propose that the nurses perform the following roles in providing care for children with a terminal illness, and while performing these roles, they play the role of an information broker for a patient/family and the physician and also for the other health care providers.

Based on the results, while performing their roles in children’s life with terminal illnesses, nurses are seen as informers. As identified when a nurse acts as a communicator, he/she repeats, translates, and clarifies the explanation that has already been delivered by the doctor until the family is able to comprehend and accept the condition of the child. To perform this role, nurses must have excellent communication skills and also good knowledge of the children's medical condition [4]. In addition, as a communicator, the nurse must be capable of communicating clearly and accurately in order to meet the client's needs [5]. Effective communication is needed to foster a trustworthy relationship between children experiencing life-threatening conditions, their parents, and the health care team because confusing or incomplete information might be distressing for the health care team and families also [17]. Nurses have a crucial role in facilitating communication among families and the health care team. Nurses, as an informer are liable to provide correct information regarding patients to doctors and family members [8].

Fig. (1). Roles of nurses in providing care to children with a terminal illness.

The role of nurses as a counselor requires that they must be able to overcome anxiety in parents and appease the family. Nurses should also pay attention to communicate information with empathy so that parents accept their child’s condition with positivity. It is highly demanding for nurses since they also see the patients’ condition and the emotional struggles that their families experience and get emotionally connected [18]. Nurturing trust among the family and the health care team with good communication at the end of a child's life could help ensure that the child receives the best proper care [19]. Continuously providing information about the situations of dying children to their family members is also one of the roles of nurses [20]. In addition, many children with terminal conditions experience sickness for a long time. Therefore, as aninformer, nurses have to communicate honestly. While discussing complicated issues, nurses are overt to the indirect comments from child or family that express uncertainty or concerns about the direction of care and nurses have to answer the questions honestly, and if nurses do not know the answer, they have to convince the family that they will arrange a discussion with the physician [1, 21]. What is needed for the purpose of care conversations is factual information and a nurse might say the same thing but in a different way because, as an information broker, the approach must be in congruence with the nurse as a supporter [22].

The nurse, as a collaborator, is also discussed in this study. As a collaborator, the nurse communicates the patients’ needs to other health care teams. The conflict between the members of the health-care team might become a barrier in performing this role; this situation is common and might lead to moral distress among team members [23]. Effective collaboration is required because family relationships with medical staff can be affected by miscommunication, especially when the medical staff gives different opinions regarding the prognosis and treatment plan [20]. As information brokers, nurses provide information to the health care team about children and families both before and after discussions about advanced care planning, provide detailed information about the treatment to children and families, answer additional questions from children and parents and clarify all misconceptions, and also organize discussions amongst the family and the health care team and reviews the topics discussed in the previous discussion regarding the care plan [21, 24].

As an advocate, the nurse may convey the clients’ needs and expectations to other health professionals, such as communicating the clients’ views on information provided by the physician. Communication at the end-of-life care, which already began when a serious diagnosis had to be discussed and bad news delivered to a child and his or her parents can be burdensome as it is often related to further uncertainties, moreover the inadequacy of professional and personal support for child and parent [18]. The nurse, as an informer, has to communicate family members the things they need to ask the physician [25]. Nurses also help clients get their rights and help families in making decisions. As an advocate for the family, the nurse should provide clear information and explain the implications of the decisions taken; for example, in decision making related to DNR, a nurse should explain the DNR as well as the implications until the family really understands before making a decision [8]. Although parents may not always be contented with how the healthcare team reveals the diagnostic information [26], parents want the physicians to discuss the options of advance care and to support them in complex decision making, even though nurses might not precede the discussions, but they shall be influential in advocating for discussions to take place and that patient preferences are expressed [21].

Another role of the nurse is as an educator. Based on the results, nurses provide health education to children and parents about care and reiterate the doctor's explanation about treatment program. Nurses have to interpret what physicians have said and also translate medical terms in order to make the families understand; this is where a nurse becomes an informer [27, 28]. Nurses also have to provide health education during discharge, planning for sustainable care at home. A nurse could be the finest member of the healthcare team to assess family comprehension and provide clarification regarding the given information [29]. In order to enhance the care of dying patients and family, better education and good communication are needed regarding terminal care with support from staff [25].

Based on the results of the study, while providing care to terminally ill children, as an information broker, nurses provide direct care to patients with good communication and provide detailed information related to nursing interventions. Parents require the health care team to discuss the options of an advance care plan and to help parents in complex decision making [21]. As a health care provider, nurses help each individual achieve their optimal welfare [6]. Provision of care to patients with terminal conditions includes physical, psychosocial, developmental, cultural, and spiritual care.

As an informer, performing the above roles for children with a terminal illness is an extraordinary challenge for nurses. Nurses must be able to become good information brokers by overcoming possible barriers. Nurses must also be able to improve their communication skills. Furthermore, to identify palliative care need for child and family, the health care team must be trained to enhance communication among them. In this way the incidence of conflict and moral distress will be alleviated [23]. In addition, to be able to help nurses as information brokers, it would be beneficial to develop and provide digital information such as a brochure or a poster that contains explanations regarding common issues related to treatment for children with a terminal illness or answers to frequently asked questions (FAQs) that can be identified through surveys of patients, their parents as well as practitioners.

To conclude, nurses play several important roles in children’s life with a terminal illness. These roles include them being a communicator, a counselor, a collaborator, an educator, and as a care provider. While performing the roles, the nurse becomes an information broker for terminally ill children and their families. Therefore, nurses must acquire good communication skills and also the knowledge related to the condition of the child and the ability to work with other health care teams with the aim of providing holistic and comprehensive care to children with a terminal illness.