https://doi.org/10.5812/jjcdc-143257

Psychosocial Challenges of Parents with Children with Acute Lymphoblastic Leukemia

authors:

avatar Samira Beiranvand ORCID 1 , avatar Sakineh Akbari ORCID 2 , * , avatar Amin Sattari ORCID 2

Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
Chronic Research Center, Jundishapur School of Nursing and Midwifery, Ahvaz, Iran
Jundishapur Journal of Chronic Disease Care: Vol.13, issue 3; e143257
published online: February 26, 2024
article type: Letter
received: November 21, 2023
accepted: December 26, 2023

how to cite: Beiranvand S, Akbari S, Sattari A. Psychosocial Challenges of Parents with Children with Acute Lymphoblastic Leukemia. Jundishapur J Chronic Dis Care. 2024;13(3):e143257. https://doi.org/10.5812/jjcdc-143257.

Dear Editor,

Cancer is considered to be the second chronic non-communicable disease and the third cause of death in the world (1). Cancer in children is a global problem and the most important cause of death in this population (about 13%) after the accidents (2, 3). Acute leukemia is the most common type of cancer in children, and acute lymphoblastic leukemia (ALL) accounts for nearly 75% of cases (4). This leukemia specifically leads to the involvement of the precursors of B and T lymphocytes in the bone marrow and, as a result, prevents the differentiation of precursors of lymphoblasts in the early stages of differentiation (5). Failure to diagnose ALL on time might lead to its spread to different parts of the body, and if not treated on time, it might lead to the child's death (6).

Until the 1970s, only 60% of children with this disease had a life expectancy and survival of more than 5 years; however, currently, more than 90% of children with cancer survive more than 5 years due to standard treatments with high effectiveness (7). The complications and problems caused by this disease have imposed many costs on human societies in the fields of health, treatment, assistance, and welfare (8). After conducting clinical trials and providing supportive care, significant progress has been made in the recovery of children with ALL during the last two decades. However, patients with this disease are still at risk of death or illness caused by the disease and treatment (9).

A child suffering from cancer puts parents under severe emotional stress and causes many psychological and social problems for them (10). At this time, children need attention and support more than ever, and the first source that can meet their needs is parents (11). Due to the chronic nature of cancer, children receive a large part of their treatment at home; this imposes more responsibilities on parents than parental responsibility (12). The new responsibilities imposed on parents have caused them to experience a sense of loss of control, stress, anxiety, depression, sleep disturbance, uncertainty, hopelessness, fear, and guilt (13), and it causes major damage to their psychological well-being and quality of life (14). The combination of these factors causes mothers of children with cancer to report a higher level of stress than mothers of children with other chronic diseases (15), which can lead to a decrease in their psychological adaptation (16).

One of the sources of stress for parents as primary caregivers is the fear of losing their children and enduring distress (17), which creates significant changes in the role of the family, the functioning of the family, and the parenting process of parents. This issue might affect the compatibility of parents and children (18). Parents of children with cancer experience social challenges, such as a significant decrease in family income, job loss, marital problems, and divorce due to their more important role in caregiving (10). The studies conducted in this field are generally focused on psychosocial problems among cancer patients and especially parents (19). Akhtar et al.'s study (as cited in Khazaeli et al.) showed that depression is very common among mothers of children with leukemia and even more so than fathers (20).

One of the issues that involve parents of children with cancer is bearing distress, which has been observed as an important structure in growth and a new insight into the initiation and maintenance of psychological injuries and prevention and treatment (21). In a study conducted by Morhan et al., the results showed that parents of children with cancer had a lower level of vitality and mental health, and parents of children with cancer showed more stress and mental distress than the general population (22). Based on these descriptions, it should be noted that parents of children with cancer might have a depressed attitude for a long time in life, experience more tension and anxiety, have a lower quality of life, and might even have symptoms of post-traumatic stress (23). In total, there is enough evidence that shows that a child's cancer is stressful for many parents in the long term.

Despite the many advances in the treatment of this disease, the diagnosis of cancer is still very scary for the child's family members and causes major changes in the parents' lives. In this field, numerous studies have been conducted, which mostly focused on children's problems; however, a clear description of the care experiences of the families of these patients is not available. Therefore, identifying the different dimensions of care experiences of family caregivers can help healthcare providers, researchers, and managers in this field to design and evaluate effective interventions and improve the outcomes of patients and family members. On the other hand, despite the fact that psychosocial challenges are multidimensional and might differ among parents, it is suggested that through interviews and educational programs, parents should be aware of psychosocial risks. In addition, parents can participate in group discussions in a safe and friendly environment to share their experiences and meet the needs of their sick children in an easier way. It is also recommended to better understand the challenges of the parents of these children, and it is better to use more approaches and methodologies of qualitative studies because this method provides a deep and comprehensive understanding of the experiences, attitudes, tendencies, and needs of patients and their families. Moreover, it allows us to more widely identify the various factors that are involved in providing care to children with cancer.

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