A pediatric patient is someone who has been critically ill since childhood up until the age of 21(1). It is common for these children to have complex abnormalities, including congenital malformations, neurological disorders, cancer, and other conditions (2). It is common for children with severe illnesses to be in this intensive care unit during the final stages of their life (3). Typically, only children who exhibit severe symptoms necessitate a comprehensive approach that involves the expertise of several medical specialists(4). As a result, the high level of care required often leads to a significant burden on the caregiver, which can negatively affect the family's finances.
Patients and their Families prevail in Hospital Services
1.1 Patients and their families can obtain hospice services (5). Services for pediatric patients may be planned prior to birth, continue after birth, and even extend beyond the age of 21, depending on their symptoms and condition.(6). Pediatric hospice services differ from those offered by public hospitals since they provide both hospice care and medical treatment for children (7). It is believed that adopting a family-centered approach is more effective in promoting children's health compared to a patient-centered approach.(8). The hospice team engages in cross-disciplinary collaboration, working alongside the patient's family and medical professionals to offer a comprehensive approach to care that encompasses physical, psychological, social, and spiritual needs(9) . When it comes to making decisions about a child's care, doctors and parents both play important roles. Additionally, siblings and other family members can also be involved in the care plan. It is worth noting that a child's future is greatly impacted by the actions and decisions of their parents(10).
1.2 Assistance from an Interdisciplinary team Specialist
The interdisciplinary team's specialists provide a range of helpful services (11). Starting with the patient's symptoms, medical professionals assist in managing the disease. Various therapies are offered to the patient and their parents to handle their anger and despair. Ultimately, all resources are concentrated on improving the patient's quality of life.(12). Hospice plays a crucial role in the care of children.(13). There are notable differences between hospice care for children and hospice care for adults.(14). Hospice care can be provided either at home or in a hospital, depending on the patient's condition. The team is always available for the patient and can be reached with just a phone call. They focus on treating the patient directly, while also educating the patient and their family, without causing disappointment to other family members (5) . Whenever a patient requires medical assistance, one of the team members promptly delivers it to them (15). Medical services, including diagnosis and treatment, are provided free of charge. Families are not responsible for any fees or expenses (16). The expenses of the pediatric hospice services were taken care of by health insurance, Medicaid, and other approved arrangements (17). Even after the patient has passed away, pediatric hospice services provide ongoing support and encouragement to the family. This helps them maintain their self-esteem and foster closer relationships (18).
1.3 Main Objective
The primary objective of pediatric palliative care is to improve and sustain the best possible quality of life for the patient, their parents, and any other pertinent individuals (13). Patients can receive these services either in the comfort of their own homes or at community health centers (19). Home services are often preferred by families and children as they feel more comfortable in their own environment. There is a vast amount of literature available on pediatric palliative care (20, 21). Research shows that cancer patients who receive specialized pediatric palliative care tend to have better outcomes (22). Families and patients require extra support when it comes to managing symptoms, diagnosis, treatment plans, psychological and social impacts of the disease, and end-of-life considerations (23-25).
1.4 Children Psychology
When children are separated from their parents who are suffering from serious illnesses, it can cause them significant emotional distress and trauma (26, 27). Studies have found that young children who are separated from their parents, especially their mothers, have a reduced likelihood of surviving into adulthood (26). Various perspectives on child development were discussed in the field of children's psychology during the 20th century(28). Numerous theories have been proposed to elucidate the process of child development (29). Jean Piaget's theory focused on the development of the mind and cognition (30). Sigmund Freud's theory described the unconscious mind in terms of psychosexual development (31). According to Erik Erikson's theory, there are eight stages of psychosocial development in children. (32)(36). Children learn from their caregivers how their needs are met, which affects their level of trust and skepticism as they grow (33, 34).As children grow older, they develop self-control and willpower (35). Each person is capable of completing their own tasks and fulfilling their own desires. Caregivers who provide a safe environment and positive outlook for children are responsible for protecting and overseeing this process (36).
1.5 Family role in the development of Pediatrist
John Bowlby, a child psychiatrist, emphasized the significance of independence in children and its relation to stress. He recognized that a child's family plays a vital role in shaping their personality. Bowlby's colleague, Ainsworth, examined the impact of separation from a caregiver on a child's mental well-being. Ainsworth explained that the severity of trauma experienced by the child depends on the type of separation they undergo (36). In certain cases, children who have been separated from their parents are given the opportunity to reunite with them. This often motivates parents to send their children back, and can actually help the children gain strength instead of causing more trauma. This situation highlights how separation can have both negative and positive effects on children, depending on the circumstances. The author even noted that a six-month-old child without their parents can experience the same level of distress as an adult (37). Separating a child from their parents or caregivers can cause trauma and have negative effects on them. The presence of parents in a child's life during times of illness or trauma is crucial, according to researchers who have studied separation (38). Parents can play a secondary role in improving their child's health through expert assistance. Several studies have explored end-of-life care for children, including a systematic review of the needs of families receiving hospice services. This review analyzed 23 studies published between 2000 and 2019, which focused on families with children receiving hospice care at home. The children ranged in age from 0 to 18 years, and the studies highlighted the importance of family familiarity in providing effective care (39). Families prefer home-based palliative care to relieve stress and maintain normal life, but managing the patient can be challenging without support. Proper care plans are needed for pediatric patients and their families. (40). A recent study conducted in the pediatric oncology department aimed to identify the outcomes of specialized pediatric palliative care that focuses on providing treatment based on PRISMA guiding principles. The study was a systematic review (41). Research articles in English from April 2020 onwards were manually reviewed, focusing on children with cancer aged 0 to 18 years. Results showed that specialized pediatric palliative care can improve pain and quality of life. Family involvement increases satisfaction with treatment and communication (42). It is recommended that future studies concentrate on assessing the efficiency of more sophisticated treatment approaches.
1.6 Children’s experiences and needs
Most of the interviews in a study involving 300 patients were conducted with the researchers' mothers, despite the main criteria being children. The children who were interviewed preferred home-based palliative care for a stress-free environment and quality time with loved ones (26, 28, 30, 31).
1.7 Difficult feelings experienced by siblings:
The siblings of the patients received very little attention from their parents, which made it difficult for them to meet their daily needs and maintain their well-being. The parents tended to overlook them because of their focus on their other child's illness(29).
End-life of the child and death had an enormous impact on the siblings psychologically. Siblings reported that no one shared information regarding their brother's or sister's condition with them. 84% stated that nobody told them about the critical situation and mortality of the disease before the last 2 hours of the death. They were going through depression and their health might be at higher risk. Though, it is exceedingly difficult for them to cope with the situation and move on in life (33, 34).