Worldwide, approximately 400 000 children and adolescents aged 0 to 19 are diagnosed with cancer every year (1). Childhood cancer is an example of the group of diseases where a majority of children diagnosed in high-income countries survive their illness today, although survival varies between different diagnoses (2). The cancer-trajectory can be prolonged, the treatment can be intense, and it is not uncommon for the treatment to pose a threat to the child’s well-being and even their life (2). The definition of pediatric palliative care, according to the World Health Organization (WHO) in 1998, was based on experiences of caring for children with cancer. Today, the definition includes all diagnoses and emphasizes the role of active multidimensional care that provides support to all family members and carried out with interdisciplinary competence (3). The World Health Organization recommends that palliative care begins when a life-threatening disease or a life-limiting condition is diagnosed, and continues regardless of whether the child receives targeted treatment or not (3). The International Association for Hospice and Palliative Care (IAHPC) has further developed the WHO definition to clearly encompass all ages, both children and adults. Most importantly, this proposal focuses on the suffering of a person with a severe illness, rather than the life-threatening illness itself (4). In 2007, standards for pediatric palliative care were presented by an international consortium of experts and these standards have recently been updated (5). The threat of losing a child is a profound trauma for parents (6). Regardless of the diagnosis, life changes for the entire family when a child is diagnosed with a life-threatening illness (7). Parents struggle to grasp the information (8) and handle the situation, irrespective of prognosis (9). Research has shown that parents want information in as much detail as is possible, even when the prognosis is uncertain or the disease is incurable (10–12). The timing of conversations imparting bad news is crucial. Sometimes parents are informed too late, or not informed at all, that their child might not survive (11).

In Sweden, around 350 children and adolescents (under 19 years old) are diagnosed with cancer each year, and approximately 60 die from the disease or treatment-related complications. The Swedish healthcare model has a decentralized structure with 21 county councils, is tax-financed and different healthcare services provide palliative care. The care is based on a regional and local organization, including specialized and primary palliative caregivers (13, 14). The majority of children in need of palliative care have access to specialized services; however, Sweden has only one hospice for children. This means that there is varying access to pediatric palliative care and specialists within the field. To align with international standards for pediatric palliative care, underlining children’s right to equal care, national and regional initiatives are ongoing (15). Yet, access to palliative care is not solely a matter of organization. Individual knowledge and attitudes toward palliative care among healthcare professionals may influence communication regarding palliative care and the time of involvement. Many care providers still see palliative care as the very last option, and then the benefits may not be fully experienced by their patients. Thus, the aim of the current nationwide study was to investigate whether parents perceived that their child received palliative care and to what extent this contrasted parents’ perceptions of their child’s care and symptoms in the last month of life.

In total, 530 bereaved parents were eligible in the registries, of which 157 were excluded. The reasons for exclusion were as follows: they could not be reached by e-mail or by telephone (n=76), they declined participation (n=63) or they did not have sufficient knowledge of Swedish to answer the questionnaire (n=18). Questionnaires were sent to all bereaved parents (each parent separately in case of the same child) who consented to participate (n=373) and those who returned the questionnaires were included (n= 232). The study population was divided into three groups based on the following question: did your child receive palliative care? In total the question was answered by 226 bereaved parents and 155 children are represented by the study, i.e., 71 children are reported by two parents. The concordance between parents was high and equal to 93%. The majority of the participating parents were married or lived with a partner and were employed. The total study population of parents is presented in Table 1 .

The study material was analyzed and is presented in relation to the parental answer, i.e., those who answered ‘yes’, those who answered ‘no’, and those who were uncertain if their child had received palliative care or not. In a dropout analysis, comparing those who responded to the survey and those who did not respond, there were no significant differences regarding the sociodemographic data presented in Table 1 . However, the percentage of women was significantly higher among responders in comparison with non-responders (x² = 8.83; P <0.05).

In this nationwide study, the majority of parents of children deceased from cancer or treatment related complications reported that they were aware that their child received palliative care and felt informed about the incurable disease within weeks up to months before the child died. In this group, the most common diagnosis was a brain tumor with a disease-related death, and the care was often received at home. In the group of parents who reported that their child did not receive palliative care most parents claimed that they were informed about the incurable disease hours or days before the child died. The most common diagnosis in this group was leukemia, with a treatment-related death, and the care was often received at the intensive care unit.

Families living in urban or rural areas, compared to sparsely populated areas, reported to a greater extent that their child had received palliative care. A majority of parents whose child received palliative care stated that the healthcare professionals were competent in caring for their child. This confidence in healthcare professionals was also present among many parents in the other two groups. Not surprisingly, it was more likely to have talked about death with the child if palliative care was received, compared to those who did not receive palliative care, or if the parents expressed uncertainty about palliative care involvement. In all three groups, many children were affected by both physical and mental symptoms during the last month of their life.

In line with previous research in Sweden on children with cancer (21), a brain tumor was the most common diagnosis when parents reported that their child received palliative care. If parents did not perceive ongoing palliative care, leukemia was the predominant diagnosis. The results indicate differences in the timing of communication regarding prognosis between these two groups. Lack of timely communication is a well-known challenge in pediatrics (11). Parents who reported that their child received palliative care also reported that prognostic information was provided at an earlier stage of disease progression, compared to the group who did not receive palliative care. In the aforementioned group, one possible reason is that the child died from treatment-related complications, in line with the above-mentioned parental view, and therefore less likely to have had conversations about ‘disease incurability’. Another potential explanation is that the child’s disease progressed more rapidly, not leaving time for such conversations. Severe complications and rapid deterioration can lead to care in an intensive care unit, which may contribute to parents perceiving the treatment as curative. Previous research has shown that children with leukemia are more likely to die from complications related to treatment rather than to the disease itself, indicating high treatment intensity with an increased risk of complications (22).

Irrespective of the cancer diagnosis, prognosis is difficult to predict. A previous study has shown that pediatric oncologists are aware of the child’s potentially poor prognosis on average three months before the parents (23). Additionally, if both the parent and the physician recognize that there is no realistic chance of a cure, it is more likely that elements of palliative care will be included in the child’s care (23). According to the parents whose child received palliative care, the information about the incurable disease was given to most families with both parents present and sometimes also with the child present. This reflects an ‘open approach’ to disclosure of a prognosis and is based on the belief that children already know when they are seriously ill, and silence can create uncertainty and a lack of support for the dying child (24, 25). Research underscores the importance of balancing the complexity of these issues with considerations on a ‘case-by-case basis’, where aspects of the role of hope and culture are crucial (24). When the question was posed of whether the parent had talked to their child about death, the most common answer was ‘no’, regardless of whether the child had received palliative care. The literature confirms that it is an emotional and distressing situation and a major challenge for parents to convey difficult information and talk about death with their child (26). However, research has also shown that avoidance may increase the risk that parents regret their silence after the child’s death (6), and communication allows families to plan for their child’s final time and to help them cope with the severe circumstances (27). From the healthcare professionals’ perspective, studies highlight the fact that being a messenger of malignant disorders, communicating a poor or uncertain prognosis, especially to adolescents, is a challenging task (28, 29). When breaking bad news, physicians need to be open about the facts, be honest with their message, and at the same time convey hope (29, 30). Healthcare professionals state that providing care for the suffering and dying child adds complexity to all other challenges in end-of-life care (31, 32). Additionally, in the encounter between the family and the multidisciplinary healthcare providers, cultural issues, communication patterns and preferences need to be considered when disclosing bad news (24, 33). An early involvement of palliative care can help families and oncologists navigate the complexities and the ‘case-by case’ considerations (3).

In the present study, the child’s home was the most common place of death when receiving palliative care, and this has also been found to be the preferred location of care and death by parents and pediatric oncologists (34). Regardless of whether the child received palliative care, parents reported that they felt they had influence on decisions regarding their child’s care and they were confident that the child would get a place in the hospital and immediate help at home if needed. However, access to palliative care was not as good for families living in sparsely populated areas. A conceivable explanation is that the decentralized Swedish healthcare model plays a role and that regional differences become apparent when a child requires palliative care (13, 14). It should be noted that the study had a broad definition of palliative care and did not determine whether the care was provided by specialized or primary palliative care providers, nor did it identify the specific healthcare needs of each child. Despite differences in the level of care needed, most parents did not feel burdened by their child’s care, which aligns with a previous publication in the childhood cancer field (35). Practical support from healthcare professionals in managing daily tasks, along with parents’ perceptions that they are not obligated to take on more responsibilities than they can handle or wish to accept, is essential in this challenging situation, as noted by parents of children with serious illnesses (36). Irrespective of the type of care, the majority of parents reported that they considered the healthcare professionals competent. A contributing factor to their professional competence could be the specialized training in pediatric oncology that has been ongoing since the early 2000s in Sweden. These training programs for physicians and nurses include teaching and seminars on symptom control, communication, and palliative care, based on research and clinical experience. A scientific evaluation has been conducted regarding this training for nurses (37).

Parents reported that in the last month of the child’s life the child had physical weakness, pain and decreased appetite, and signs of depression and distress, irrespective of whether the child received palliative care. Regarding the symptoms affecting the children receiving palliative care, our findings do not differ from previous studies (38, 39). When children receive palliative care, it is part of the treatment to regularly assess various symptoms, particularly pain. This study did not explore symptom assessment; however, if the care is defined as palliative, it is likely that parents are particularly vigilant for signs that indicate a need for symptom relief. Regardless of how the form of care was defined, it was unsatisfactory to observe that not all children could have their symptoms alleviated. A recently published study shows that children’s symptoms need to be addressed more effectively (40). It is known that parents rate their child’s suffering higher than the child does themselves (41). Interestingly, when children with cancer report on their situation in their final days, their physical suffering is greater than their social and existential challenges (42).

The strength of this study is the national approach, including parental perceptions of their child’s incurable illness after treatment for several different cancer diagnoses. A limitation is the risk of recall bias regarding parental perceptions. Furthermore, we do not know if parents who reported that their child did not receive palliative care or those who were uncertain had wished to get this care for their child or received ‘non- articulated’ palliative care. The study has a response rate of less than 50%, and there is a potential risk for selection bias, as well as recruitment bias. However, given the subject area and the extensive study design with multiple research questions, the study findings are considered to reflect the target population.

In conclusion, understanding parental perceptions in pediatric palliative oncology care is vital for developing child-centered care. The study findings highlight the role of initiating palliative care early, the need for access to national equitable palliative care, and professional competence across the entire lifespan, regardless of diagnosis and place of residence.