The Lived experience of primary caregivers of childhood cancer in the end of life: A qualitative study

Cancer is one of the leading causes of childhood death worldwide. Cancers under the age of 18 have been epidemiologically called pediatric cancers (1). Childhood cancer is one of the most common and yet deadly diseases among children. Among childhood cancers, leukemia and central nervous system tumours are the most common and have a larger population of patients and caregivers in this category of cancers (2, 3).Diagnosing and treating the disease will involve the whole family in a series of stressors such as frequent medical visits, invasive procedures, severe side effects and changes in family plans, as well as economic issues (4). Parents are more likely to be challenged to balance the physical and emotional effects of a chronic illness imposed on the family, and the distress they face can put all family members at risk of severely declining quality of life (5) Or put other negative consequences incompatibility (6). Caregiving, especially for children with malignant cancers, is an overwhelming task that exposes the caregiver to a variety of different experiences and situations. The purpose of the present study was to understand the lived experience of caregivers in childhood cancer at the end of life of the patient. 

The research method is qualitative in terms of interpretive phenomenology. The population participating in this study included all primary caregivers of children and adolescents who had been diagnosed with childhood cancer before the age of 18 and have faced with the failure of the therapeutic process. The sampling method was purposive sampling in which 8 caregivers were selected to participate in the research and they were interviewed and analyzed. All interviews were recorded and then transcribed manually and finally analyzed using the interpretive analysis method.

Eight semi-structured interviews with participants in the study were conducted and the analysis of interview data led to the identification and classification of two main themes: Surrounded by unpleasant emotions and encountering special events consists of 11 sub-themes: Experience of disability, Loneliness, Anger and failure, Exhaustion, Overwhelmed with worries, In the difficulty of waiting and ambiguity, Surrender, Facing recurrence, Facing the need to make decisions, Facing the certainty of death, Interacting with a child in the shadow of death.

In the final phase of a childchr(chr('39')39chr('39'))s life, the caregiver will be surrounded by a series of negative and unpleasant emotions; on the one hand, they experience a heavy emotional burden, dealing with the childchr(chr('39')39chr('39'))s physical condition, and on the other hand, in challenging decision-making processes (20). A caregiver, or more specifically a parent/caregiver, in the final phase of a childchr(chr('39')39chr('39'))s life, experiences a variety of negative emotions. the caregiver will experience a strong sense of helplessness and inadequacy(26). Emotions followed by feelings of inability include extreme anger and frustration. As a caring parent, all caregivers strive to maintain hope and improve the childchr(chr('39')39chr('39'))s condition (27). The result of these unsuccessful efforts will be an experience of unpleasant feelings such as constant threat and encountering intense ambiguity, or in other words, uncontrollable and unpredictable stimuli that evoke a high volume of persistent anxiety (28).In the last days of the childchr(chr('39')39chr('39'))s presence in the hospital, the caregiverchr(chr('39')39chr('39'))s fatigue, frustration and feelings of the inability toward the existing condition make the situation extremely exhaustive for the caregiver. The burden of care will be much heavier when the patient is more likely to die. The burnout experience in caregivers can be described by the general adaptation syndrome introduced by Selye (29). Some parts of the surrender that caregivers reported, might be the result of the fatigue caused by constant anxiety.Caregivers pointed to the concept of loneliness in two dimensions; one is feeling lonely and the other is being alone, especially in caregiving tasks. Since the course of treatment in cancer patients will require full-time care, both caregiver and patient are deprived of normal social interactions and experience forced limitations in their relationships. Therefore, Social isolation is one of the consequences of such procedures. The other dimension is related to the deep feelings of loneliness and the lack of being understood by others. For that reason, a distinction must be made between being alone and feeling alone (31). Some researchers have described two components of loneliness, the first of which involves emotional loneliness due to a lack of intimacy or close emotional attachment, and the second is social loneliness (32). In the present study, caregivers complained about the experience of both dimensions of loneliness as well.Another theme that was extracted from the interviews was " encountering special events ". In this context, the sub-themes were about facing new and challenging situations that generally require using more cognitive abilities under the pressure of intensified and unpleasant emotions.caregivers find themselves in the middle of a variety of important and challenging decisions. One of the most difficult decisions to make is whether continuing the treatment or choosing a new type of therapy among the options; A treatment that could be the last hope before the child dies. Due to the ambiguity of the path ahead, one of the needs expressed by caregivers, in this case, is the urgent need for and informing the caregiver of all possible options and their consequences (20).The caregiverchr(chr('39')39chr('39'))s interaction with the child in the final phase is one of the most challenging ones. For the parent/caregiver in this period, communication with the dying child will activate two dimensions: The first is interacting with the child while waiting for the last day, and the second is maintaining the quality of the interaction.   Another sub-theme is the experience of recurrence throughout the treatment process. The parent/caregiver reports feelings of frustration, extreme sadness, inability, and loss of control over the situation. Parents as caregivers consider their responsibility to protect their child and the difference between their desire and the existing reality will lead to feelings of severe failure and guilt (35).Furthermore, owing to the high ambiguity of the situation in this phase, providing sufficient and honest information and helping caregivers to make the right decision in difficult situations, is one of the essential services that health professionals should provide to the caregiver. In conclusion, understanding the lived experience of this important group of caregivers will help specialists in cancer treatment teams to have sufficient knowledge for managing and supporting caregivers and provide higher quality services.