The Lived Experience of Psychological Resilience in Parents of Children with Leukemia: A Qualitative Study

doi:10.21203/rs.3.rs-5229135/v1

Background: Pediatric leukemia poses considerable burdens on caregivers, precipitating psychological distress and financial strain. Caregivers may experience cognitive, emotional, and behavioral shifts. The adverse event, such as the COVID-19 pandemic, may exacerbate their psychological distress. The lived experience of parental psychological resilience in the context of pediatric leukemia caregiving warrants greater scrutiny during the COVID-19 pandemic period. This investigation delves into the lived experience of the psychological resilience dynamics among parents of children with leukemia.

Methods: Employing phenomenological methodology, semi-structured interviews were undertaken with parents of pediatric leukemia patients at varying stages of the disease, admitted to a tertiary care pediatric hematology unit in Sichuan Province between March and September 2021. Data analysis was performed using NVivo 11.0 software alongside Colaizzi's phenomenological analysis technique.

Results: The study encompassed twenty-four primary caregivers of children with leukemia, including 19 mothers and 5 fathers, with an age span of 28 to 48 years, a mean (SD) of 34.67 (5.39). Analysis revealed five primary themes and seven sub-themes, encompassing: complex emotional trajectories marked by simultaneous negative and positive feelings; the considerable burden of care juxtaposed with inadequate coping mechanisms; a pronounced eagerness for caregiving knowledge contrasted with a deficit in essential training; curtailed social engagement and challenges in resuming normalcy; and a pronounced need for psychological support.

Conclusions: The emotional landscape for parents caring for children with leukemia is characterized by a spectrum of lived experiences and emotions, both positive and negative. These emotional shifts are shaped by diverse factors. Positive emotions have the potential to bolster resilience in parents, enabling them to navigate adversity, surmount challenges, and proactively manage the psychological strains and stresses engendered by such crises. Mitigating caregiving demands and augmenting social and psychological support are crucial for enhancing life quality and wellbeing among these parents.

psychological resilience

parents

children

leukemia

The psychological resilience of parents caring children with leukemia deserves attention. Their lived experiences shared during the interview are valuable for the development of tailored psychological interventions for both the children with leukemia and the caregivers.

Childhood cancer remains a principal cause of mortality in children globally, hindered by obstacles in prevention and early detection (Bhakta et al., 2019). Annually, around 400,000 new childhood cancer cases are reported, leukemia is one of the most common types of childhood cancers (WHO, 2021). Treatment strategies, including immunotherapy, chemotherapy, and bone marrow transplantation, have markedly advanced, with the 5-year survival rate for acute lymphoblastic leukemia (ALL) patients nearing 90% (Inaba & Pui, 2019; Pui, 2020). Despite these improvements, leukemia treatment is protracted, often necessitating 2–4 years of regular hospital care (Suparit et al., 2023).

Leukemia treatment is fraught with adverse effects, including hair loss, vomiting, appetite loss, weight reduction, and myelosuppression (Suparit et al., 2023). Relapses significantly diminish the long-term survival rates—only 48% for ALL (Mustafa et al., 2019) and 40% for acute myeloid leukemia (AML) (Nabizadeh et al., 2022). Furthermore, infections represent a prevalent complication in pediatric leukemia, with respiratory and urinary tract infections impacting 9.9–72.5% and 2.9–19.8% of patients, respectively (Pelland-Marcotte et al., 2019).

The early diagnostic challenges and protracted, adverse-effect-laden treatment of leukemia pose considerable burdens on caregivers, precipitating psychological distress and financial strain (Wang et al., 2017; Xie, 2017). Caregivers may experience cognitive, emotional, and behavioral shifts, with varying degrees of psychological distress (Cornelio et al., 2016; Muskat et al., 2017; Suparit et al., 2023), including stress indicators (Wu, 2019). The uncertainty surrounding the disease contributes to sustained anxiety among parents, persisting even a year post-treatment (Wakefield et al., 2011). Notably, 64.5% of parents experience anxiety (Chen et al., 2015), with middle-aged mothers displaying heightened anxiety levels, driven by concerns over the potential of bearing another child (Cornelio et al., 2016).

The COVID-19 pandemic, a significant adverse event in human history, has compounded the challenges faced by parents of children with leukemia, exacerbating their psychological distress (Darlington et al., 2021; Huang et al., 2023; Sutherland-Foggio et al., 2024). Research indicates substantial psychological impact on these caregivers, with a study by Guido et al. (2021) revealing that 87.5% of parents experienced medium to high risk of traumatic disorders, 83.7% reported medium to high stress levels, and 75% suffered from high anxiety while caring for their oncologic children during the pandemic. Furthermore, the emotional and behavioral responses of parents may negatively affect their children’s psychological wellbeing, potentially leading to severe somatization symptoms (e.g., abdominal pain, headache, fatigue), generalized anxiety, and other detrimental emotions. These conditions can hinder the children's recovery and impact familial dynamics (Huang et al., 2018; Lin, 2016). Given these findings, it is crucial for healthcare professionals to address the psychological needs of parents caring for children with leukemia (Wang, 2021).

Parents of children with leukemia may experience both negative and positive emotion (Bajjani-Gebara et al., 2019; Yang, 2018). Resilience occurs when individuals show patterns of positive adaptation in the face of significant adversity or risk (Snyder et al., 2021). Parents who were caring for children with leukemia experienced great changes and faced adversity in their lives during the COVID-19, such as losing jobs, financial burden and at risk of COVID-19 infection, which may greatly influence their psychological well-being. The good adaptation state of parents of children with leukemia is characterized by positive behavior, which may influence their children's recovery process (Eilertsen et al., 2016). Therefore, exploring the lived experience of psychological resilience in parents of children with leukemia is of great significance.

Historically, research on childhood leukemia and caregiver stress predominantly focused on aspects of negative psychology, often equated with "mental illness." However, the evolution of modern psychology has shifted attention towards positive psychology, heralding a paradigmatic change. Within this framework, resilience emerges as a key area of inquiry, emphasizing the interplay of internal and external factors in fostering an individual's capacity to surmount adversity. Enhancing resilience through personal coping mechanisms and social support is identified as pivotal in navigating challenges and mitigating stress (Hong & Park, 2015).

Recent studies on the resilience in parents of children with leukemia have predominantly utilized linear correlation analysis, which primarily elucidates singular or direct cause-effect relationships (Baran et al., 2020; Eilertsen et al., 2016; Ferraz et al., 2024; Koyu et al., 2024; Rosenberg et al., 2019). Although there are studies on the experience of caregivers of children with leukemia or cancer (Fisher et al., 2021; Liu et al., 2021; Luo et al., 2022), which either only emphasized on caregivers’ experience, or focus on exploring resilience from the perspective of family system, or studied the resilience of parents of children with more than one type of cancer, there are few studies on the lived experience of resilience in parents caring for children with leukemia during the COVID-19. A more nuanced investigation into the lived experiences of parents being in extreme circumstances is essential to fully grasp their psychological states, coping mechanisms, and adaptation processes—key components in fostering psychological resilience. This research is developed based on the concept of resilience, aims to thoroughly examine the lived experiences and coping strategies in parents of children with leukemia during the COVID-19 pandemic. By delving into their psychological well-being, adjustment dynamics, resilience traits, and determinants, this study seeks to inform the development of tailored interventions for both the children with leukemia and their primary caregivers.

Study population

Participants in this study were meticulously chosen through purposive and theoretical sampling methods. Recruitment efforts were spearheaded by the lead researcher, who engaged in direct conversations with prospective participants. The cohort comprised parents who were the primary caregivers for children diagnosed with leukemia, at various stages of the disease, and receiving treatment in the Pediatric Hematology unit of a distinguished tertiary-level hospital in Sichuan Province between March and September 2021.Inclusion Criteria: (1) Children diagnosed with leukemia in accordance with established clinical guidelines (Ge et al., 2018; Wang et al., 2018); (2) Parents aged 18 years or older with children aged 19 years or younger who were still undergoing active treatment; (3) Parents must be the primary caregiver, dedicating over 6 hours daily and providing continuous care for at least one month; (4) Parents must exhibit proficient cognitive, comprehension, and communication skills; (5) Consent to participate in the study. Exclusion Criteria:(1) Parents of children who had second malignancies/recurrence of leukemia; (2) Parents suffering from psychological or mental health disorders; (3) Parents facing challenges with reading or communication, such as auditory or speech impairments; (4) Parents who have previously received professional training in leukemia care or psychological support. Twenty-four participants met the inclusion criteria, and data collection reached a saturation point after the twelfth participant. Nevertheless, to enrich the understanding of resilience among the cohort, the researcher opted to conduct interviews with all 24 participants, aiming to gather comprehensive insights for future research on enhancing psychological resilience.

Data collection

Utilizing phenomenological research methodologies, semi-structured, in-depth interviews were conducted ranging from 40 to 60 minutes in uninterrupted environments such as conference rooms, educational settings within hospitals (specifically, classrooms dedicated to patients' educational needs facilitated by medical social workers), or other locations preferred by the interviewees. The interdisciplinary research team comprised the Department Head of Pediatric Hematology, two Senior Nursing Officers, and a cadre of graduate students proficient in qualitative research techniques.

This team meticulously developed an exhaustive interview guide, drawing on pertinent academic works and consultations with seasoned professionals in hematology nursing and psychological wellness. The structured interview prompts were as follows: (1) How did you feel when your child was diagnosed with leukemia? (2) What do you know about your child's illness, treatment plan, and care? (3) What difficulties did you have while taking care of your child and how did you overcome them? (4) What changes have occurred to your life after your child caught the illness? (5) What health education have you being offered in the hospital? (6) Where did you normally get medical resources for your child? (7) What supports have you being offered from people around you? (8) What kind of psychological counseling have you ever received? (9) What do you and your family need the most now? (10) What are the future plans for your child and yourself? Pre-interview preparations entailed reiterating the study's objectives to participants and ensuring the availability of essential recording equipment and documentation tools. Guided by the structured interview protocol, researchers initiated conversations naturally, with a secondary observer documenting participants’ non-verbal cues. Consent was obtained for audio recording and note-taking during these sessions.

Data analysis

Data analysis was conducted in parallel with the collection process, employing the Colaizzi phenomenological methodology (Colaizzi, 1978) for scrutinizing interview content. This rigorous approach entailed: (1) Thoroughly reviewing and assimilating the interview transcripts multiple times; (2) Isolating and highlighting statements of significance; (3) Systematically coding recurrent salient opinions; (4) Aggregating and interpreting the coded insights; (5) Crafting an exhaustive and nuanced narrative description; (6) Differentiating and elevating similar perspectives to distill the thematic essence; (7) Seeking interviewee validation to enhance the findings' veracity. To uphold the integrity and reliability of the analysis, dual researchers executed the analytical process and achieved verbatim transcription within a 24-hour timeframe. Subsequently, the unprocessed data was digitally encoded and securely stored on a U-Disc within the confines of the lead researcher’s office.

Ethical approval

This research received approval from the Ethics Committee from a tertiary-level hospital in Sichuan, under approval number IRB (Research) 2021/443. Participants provided informed consent prior to the study. The research team comprehensively briefed participants on the study objectives, ensuring thorough understanding. Participants were assured of their right to withdraw from the study at any point without facing any repercussions. Moreover, the research team pledged to maintain the confidentiality of the data, implementing stringent security measures, including storing the data in a secured location accessible only to authorized personnel and disposing of the data securely upon the conclusion of the study.

Rigor

To uphold the methodological integrity of the research, three strategies were meticulously implemented: (1) The establishment of an audit trail at the study's inception, enabling auditors to systematically review the procedural history at any point, thus ensuring transparency and accountability. (2) The practice of member checking with interviewees, a critical step to authenticate data veracity. This process involves strategic inquiries directed at participants to affirm the accuracy of the researchers' interpretations of their responses, as delineated by Polit and Beck (2008). (3) Engagement in peer debriefing sessions among the research team facilitated the resolution of any uncertainties or discrepancies regarding methodological approaches or data interpretation, thereby enhancing the study's credibility. It is noteworthy that these debriefing sessions resulted in no substantial modifications.

The study encompassed twenty-four primary caregivers of pediatric leukemia patients, ranging in age from 3 to 16 years, with a mean (SD) of 7.54 (3.60). This cohort comprised 19 mothers and 5 fathers, with an age span of 28 to 48 years, a mean (SD) of 34.67 (5.39). Both parents and patients’ demographics included in the study are reported in Table1.

Five theme categories and 7 sub-themes emerged from analysis of the interviews (panel):

Panel. Theme categories and sub-themes.

Theme 1. Complex emotional trajectories marked by simultaneous negative and positive feelings

Subtheme 1. Emotional Turmoil and Physical Strain

Subtheme 2. Emergence of Positive Emotions

Subtheme 3. Psychological Adjustment

Theme 2. The considerable burden of care juxtaposed with inadequate coping mechanisms

Subtheme 1. Solo Caregiving and Concurrent Family Challenges

Subtheme 2. The Exacerbating Effects of COVID-19

Theme 3. A pronounced eagerness for caregiving knowledge contrasted with a deficit in essential training

Subtheme 1. Educational Needs on Illness Knowledge

Subtheme 2. Health Education and Training Needs

Theme 4. Curtailed social engagement and challenges in resuming normalcy; and limited social activities and challenging to return to normal life

Theme 5. A pronounced need for psychological support

Theme 1. Complex emotional trajectories marked by simultaneous negative and positive feelings

Subtheme 1: Emotional Turmoil and Physical Strain

This subtheme encapsulates the profound emotional distress and subsequent physical effects experienced by parents upon the cancer diagnosis of their children, coupled with pervasive feelings of disbelief, guilt, and helplessness.

The initial emotional response among parents was characterized by intense shock and denial upon receiving their child's leukemia diagnosis.

P2 recounted, "Initially, I was engulfed in despair, questioning the accuracy of the diagnosis. It required several months for my spouse and me to come to terms with the reality."

P9 described feeling overwhelmed, stating, "It felt as though the world was ending... We were blindsided by such devastating news, especially given our child’s previously good health."

Following the diagnosis, parents reported experiencing significant physical ailments triggered by the stress of their child's condition, including insomnia and weight loss.

P6 shared, "The challenge of sleeplessness was constant, often exacerbated by overnight medical treatments for my child, keeping me vigilant into the early hours."

P1 expressed concerns about the potential for disease relapse and infection, noting, "The fear of relapse and infection, among other unforeseen complications, is a constant source of anxiety."

P12 revealed the toll of stress, saying, "During my son’s most critical month of treatment, I lost over 5 kilograms due to the immense pressure. "

Throughout the treatment journey, parents of children with leukemia grappled with intense guilt, not only towards the afflicted child but also regarding siblings left at home. This emotional burden was compounded by a pervasive sense of helplessness, stemming from uncertainties about providing adequate care and the harrowing fear of potentially losing their child.

P 2 lamented, "I blame myself for not protecting her adequately, leading to her illness. I can't help but feel that I am at fault..."

P3 expressed regret over the inadvertent neglect of their other child, stating, "My inability to devote attention to my other child fills me with remorse."

P1 recounted a particularly challenging episode of infection, "When my daughter faced sepsis and septicemia, I was at a loss, unsure of how to care for her effectively."

P17 shared the torment of fearing the worst, "Whenever I encounter news of children succumbing to cancer, I'm consumed by the fear of losing my son, which overwhelms me with sorrow..."

This journey often saw parents shouldering the emotional burden in isolation, endeavoring to shield their children from the depth of their anguish.

P19 revealed, "Concealing our distress was crucial, as our daughter could easily read our worries. During an especially difficult phase of chemotherapy, which was complicated by a chickenpox infection, she questioned her chances of survival. My response was to embrace her silently, my tears speaking volumes..."

Subtheme 2: Emergence of Positive Emotions

While the initial response to a child’s leukemia diagnosis often involves intense negative emotions, many parents find themselves transitioning towards a state of acceptance, facilitated by the support from their peers and the encouragement of medical professionals.

P1 reflects, "Despite the prevalent sorrow within my family, we have learned to console ourselves. Acknowledging the reality of our situation was essential. The assurance from doctors regarding the high recovery rates of this disease instilled in us the confidence needed for our child’s care."

P16 adds, "The solidarity from healthcare staff and fellow parents has been invaluable. Engaging with them has helped me gradually come to terms with our reality. My focus now is solely on providing the best care for my daughter, without dwelling on the accuracy of the diagnosis."

Subtheme 3: Psychological Adjustment

The journey of psychological adjustment for parents caring for children with leukemia is influenced by various factors including the child’s health status and integration into school life, personal coping strategies, familial dynamics, and the breadth of social support. Although there is a noticeable shift from the initial shock and denial to acceptance and proactive engagement in treatment, the resumption of normal activities such as school can sometimes rekindle feelings of insufficiency in family support, leading to a resurgence of negative emotions.

This process underscores the dynamic nature of psychological adaptation, highlighting that while progress can be made towards positive emotional states, vulnerabilities may persist, especially when faced with new challenges or perceived deficits in support.

P5: "Following the conclusion of chemotherapy, my son experienced a phase of recurrent colds and coughs, which significantly heightened my concern and resulted in numerous sleepless nights."

P8: "Upon my son's reintegration into school, concerns persisted regarding potential bullying by peers and his ability to maintain academic performance."

P7: "During a particularly challenging period, I grappled with feelings of stress and helplessness, occasionally resulting in disagreements with my husband. Handling responsibilities solo in the hospital compounded my frustration."

Self-adjustment emerges as a pivotal strategy for parents nurturing children with leukemia, aiding them in navigating the emotional tumult encountered throughout the treatment journey. This entails either redirecting their focus or proactively acquiring caregiving knowledge to mitigate persistent negative emotions.

P7: "When I felt sad, I would try to shift my attention to something else."

P20: "Whenever I was free, I would search information online or from books on how to provide care for my child. Additionally, doctors and nurses taught me about the illness and how to take care of my child as well. I felt much better now."

Family adjustment refers to the good communication among the family, and being supportive with each other. During the patients’ treatment process, multiple support resources helped parents caring children with leukemia adapt to the adversity.

P12: "Our family dynamic is notably open and democratic, fostering an environment where my son feels comfortable sharing with us. Informed by the doctor that the initial stage would be the most challenging, we collectively disclosed his diagnosis to him and devised a united plan to combat the illness."

P19: "My relatives demonstrated considerable eagerness to assist, contributing financially towards my child's ongoing treatment. Additionally, social workers facilitated the search for academic tutors, while my daughter expressed aspirations to pursue a career in medicine."

P20: "Upon discovering our child's illness, my colleagues and friends extended substantial support through financial aid, goods, and moral encouragement, enveloping me in a sense of love and warmth."

Theme 2. The considerable burden of care juxtaposed with inadequate coping mechanisms

Subtheme 1: Solo Caregiving and Concurrent Family Challenges

A predominant theme among parents was the solitary nature of caregiving responsibilities, compounded by simultaneous family adversities.

P 1 shared, "Following our child's diagnosis, my spouse and I left our jobs in another city to live near the hospital. My husband secured a local delivery job, while I single-handedly manage my child’s care."

P9 disclosed, "My health struggles, including a recent flare-up of lumbar disc herniation, complicate my caregiving duties, yet I persevere for my child's sake."

P16 recounted, "The day of my daughter's diagnosis was overshadowed by a family crisis—my sister-in-law's car accident and my mother-in-law requiring post-operative care amidst mourning my father-in-law’s passing. This necessitated our departure from employment to attend to both elder and younger family members."

Subtheme 2: The Exacerbating Effects of COVID-19

The pandemic introduced unique challenges for these families, from movement restrictions to heightened infection risks.

P1 explained, "Initially, I prepared meals for my daughter at our rental. However, COVID-19 restrictions halted our mobility, affecting our family's sole income as my husband had to cease working to manage our daughter’s nutritional needs due to the hospital's inadequate food options."

P16 stated, "Living remotely necessitates monthly hospital visits for my child's treatment, with mandatory throat swabs amplifying our anxiety over potential COVID-19 exposure."

Theme 3. A pronounced eagerness for caregiving knowledge contrasted with a deficit in essential training

Subtheme 1: Educational Needs on Illness Knowledge

Parents of children with leukemia expressed a strong desire for professional education pertaining to the disease.

P13 noted, "I found considerable value in 'Xiaobai's Sunflower Treasure,' a resource available in the ward. It, along with educational articles from the hospital's WeChat account, became my trusted sources of information, given my skepticism about the reliability of online content."

P18 stated, "Despite acquiring substantial knowledge about the illness from other parents and medical staff, my thirst for comprehensive information remains unquenched. I'm keen to access any knowledge that could aid my child's treatment and recuperation."

P20 mentioned, "I am eager to engage in educational initiatives about leukemia. The clinical expertise of medical professionals offers invaluable insights."

Subtheme 2: Health Education and Training Needs

This theme captures the necessity for parents to acquire specialized knowledge for enhanced caregiving, including dietary guidance.

P23 expressed, "I am interested in dietary training to learn optimal meal preparation for my child."

P10 shared, "My knowledge largely comes from medical staff and other parents. While peer advice is beneficial, it often lacks coherence. Structured, professional training would be preferable."

P18 revealed, "Online platforms like 'The Mother's Classroom' have been informative. I've also gleaned tips from nurses' instructions to interns. While peer experiences are valuable, the need for expert guidance tailored to my child's unique condition is paramount."

Theme 4. Curtailed social engagement and challenges in resuming normalcy; and limited social activities and challenging to return to normal life

The majority of parents caring for children with leukemia found themselves compelled to resign from their positions to dedicate themselves to their children's care, leading to a significant reduction in their social engagements and alterations in their external relationships.

P11 shared, "My social life dwindled to practically nothing, resulting in lost connections with several friends. My world has been reduced to the hospital, home, and the occasional supermarket visit for groceries."

P17 observed, "Currently, my social interactions are predominantly with other parents from the hospital; my connections with external friends have significantly waned."

P21 explained, "Given the prolonged absence from our home, our extended family and friends are well aware of my child's condition. I've avoided contact to prevent any assumptions that we might be seeking financial assistance."

Parents of children in the recovery phase reported challenges in reintegrating into normal societal roles due to prolonged isolation and the stigma associated with their child's illness.

P7 stated, "Even though my child's health has stabilized, reentering the workforce has been daunting due to my age and the need for ongoing child care. Finding suitable employment remains a perplexing challenge."

P18 lamented, "Having lost my original social network, reestablishing my professional life feels like starting from scratch, which is incredibly daunting."

P6 recounted, "Residing in a rural area, we've encountered gossip about my child's condition, particularly noticeable during her hair loss from chemotherapy treatments, leading us to refrain from returning to our village."

Theme 5. A pronounced need for psychological support

The majority of parents attending to children diagnosed with leukemia reported a significant need for psychological support, including counseling services, yet they faced uncertainty regarding access to such resources.

P15 remarked, "We, alongside our fellow caregivers, consistently offered mutual encouragement and support, underscoring the invaluable role of psychological support in our journey."

P18 noted, "I am open and eager to engage in psychological counseling; however, I am at a loss as to where such services can be procured."

Strengths and Limitations

This investigation delivers an in-depth, exhaustive analysis of the lived experiences of psychological resilience in parents of children with leukemia, and lays the groundwork for crafting specific psychological support initiatives in the future. This study's findings illuminate the dual nature of experiences and emotions—both adverse and beneficial—among parents caring for children with leukemia. These findings align with the research conducted by Bajjani-Gebara et al. (2019), which also acknowledges the simultaneous presence of negative and positive dimensions of well-being in parental caregivers. The adjustment journey for these parents is shaped by a multitude of factors. Critical to bolstering their resilience and enhancing their psychological well-being is the prompt assessment of their specific psychological needs, coupled with the provision of targeted health education and initiatives aimed at alleviating their considerable burdens.

Nonetheless, the study is subject to certain limitations. Primarily, the research cohort consisted exclusively of parents offering direct care to their children within the pediatric hematology department of a tertiary healthcare facility in Sichuan Province, China. Consequently, these findings may not encapsulate the broader spectrum of resilience experiences among all parents caring for children with leukemia. Furthermore, it is acknowledged that some caregivers might not recall their past experiences in their entirety, leading to an incomplete representation of their emotional evolution. This observation suggests the potential value of integrating both prospective and retrospective methodologies in future research endeavors to more thoroughly investigate the psychological journey of parents engaged in the caregiving of children with leukemia.

Implications for Policy and Practice

The evaluation of the psychological requirements of parents tending to children with leukemia necessitates the provision of specialized psychological counseling and support interventions. Contrary to earlier research which posited that the psychological evolution among such parents typically followed a linear trajectory from despair to adaptation (Wang et al., 2022), our findings depict a more complex and multifaceted psychological adjustment process. It appears to be significantly influenced by a confluence of internal (the caregivers’ own psychological states) and external elements (family dynamics, peer and societal support). Additionally, the child's health status emerges as a pivotal determinant of the parents' emotional well-being. The inherent uncertainty of the disease trajectory heightens parental concerns over potential relapses, prompting a cessation of long-term planning for their offspring. Echoing Liu et al. (2021), this study underscores the pervasive sense of uncertainty among parents, leading to overprotectiveness (Suparit et al., 2023) or guilt in the face of adverse outcomes, attributed to perceived inadequacies in caregiving. It is imperative for healthcare practitioners to undertake individualized assessments of these parents' psychological needs to tailor interventions effectively.

This study also signals the necessity for further research into positive psychology's role in enhancing the resilience of parents navigating the challenges of pediatric leukemia care. This study elucidates that resilience significantly contributes to the mental well-being of parents tending to children with leukemia, further fostering family unity (Eilertsen et al., 2016) and enhancing familial functionality (Fisher et al., 2021). Hence, the proactive development of resilience is imperative for these caregivers, equipping them to better navigate the challenges presented throughout their child's treatment journey (Kalisch et al., 2017; Suparit et al., 2023). Furthermore, the research underscores that sufficient personal resources (Rosenberg et al., 2014) along with robust peer support (Mezgebu et al., 2020) serve as crucial, positive determinants of elevated psychological resilience in this demographic.

The findings revealing that while the majority of these parents received support from medical social workers and their peers, comprehensive professional psychological counseling was markedly absent. This shortfall in psychological counseling services can be attributed to several factors, including the nascent state of psychological healthcare, a dearth of counseling resources, and the regional populace's reticence towards psychological interventions. Moving forward, it is essential for healthcare practitioners to prioritize the mental health of parents caring for children with leukemia, offering specialized psychological counseling and devising bespoke interventions. Such measures are designed to assist them in managing periods of distress, fear, and uncertainty more effectively, diminishing adverse emotional responses, and bolstering positive coping mechanisms.

This study implies that comprehensive health education and skill development programs are necessary for parents of children diagnosed with leukemia. In interviews, 11 parents of children with leukemia expressed a keen interest in acquiring caregiving knowledge and skills. Research focusing on parental perspectives of education for children recently diagnosed with ALL reveals a significant initial gap in understanding leukemia (Aburn & Gott, 2014). Over half of the parents disclosed that their primary source of caregiving knowledge was through sharing experiences with fellow parents. However, this informal exchange of information lacks the depth and accuracy of professional medical advice, leading to concerns regarding its reliability.

The overwhelming majority of these parents exhibit a profound desire for authoritative information on caregiving, underscoring the necessity for health education tailored to the specific needs of their children's conditions. Such education could include detailed explanations of leukemia's clinical signs and guidelines on managing a peripheral insertion catheter, enhancing their grasp of treatment protocols and effective home care. Moreover, to bolster adherence to treatment plans, designing age-appropriate health education initiatives is recommended. These programs should engage children in understanding their condition and learning self-care techniques, thereby fostering better treatment compliance. Liu et al. (2021) also suggested that health education, as an important supportive strategy, is a cost-effective resource for promoting parents care knowledge retention, thereby it helps to alleviate the psychological stress due to lack of care information and enhance their psychological resilience.

Alleviating the care burden on parents of children with leukemia is imperative. Our research revealed that a significant proportion of primary caregivers undertake the sole responsibility of providing round-the-clock care to their children, leading to chronic physical exhaustion and adversely affecting some patients' physical well-being. Additionally, a notable number of these families face financial challenges, with many reporting no stable monthly income. The findings from Wang et al. (2017) indicate that the caregiving burden encompasses various factors, such as the duration of daily care, the caregivers' general health, household income, social support, and the availability of additional caregivers. The scarcity of local medical facilities further exacerbates this burden, compelling numerous families to seek treatment in metropolitan areas like Chengdu, necessitating frequent travel for care, a situation that became increasingly challenging during the COVID-19 pandemic.

This scenario underscores the critical need for targeted interventions to reduce the caregiving burden, ensuring better health outcomes for both patients and their families. Implementing strategies to mitigate the caregiving burden on parents of children with leukemia is imperative. Interventions such as providing guidance on caregiving techniques, offering remote support (Wang et al., 2018), and delivering nutritional counseling can significantly aid these parents in managing challenges and diminishing the caregiving load.

Furthermore, our research indicates that concerns regarding the dietary and nutritional wellbeing of leukemia patients are prevalent among parents, significantly contributing to their stress during the child's hospital stay. Facilitating collaboration with dietitians to tailor nutritional plans specifically for leukemia patients could play a pivotal role in easing parents' caregiving responsibilities. Additionally, leveraging social support networks is vital for lessening the caregiving strain. The study underscores the instrumental support provided by charitable organizations in supporting parents of children with leukemia. Medical social workers, readily available in healthcare settings, extend their support beyond academic assistance, engaging in recreational activities with the children. Consequently, adopting a comprehensive approach encompassing various supportive measures is crucial for alleviating the caregiving burden faced by these parents.

This research elucidates the psychological transformations and coping mechanisms employed by parents of children with leukemia amidst the COVID-19 pandemic, thereby enriching our understanding of their psychological resilience and the factors influencing it. The insights gleaned from this study are poised to inform the creation of precise psychological support initiatives tailored to the unique challenges faced by these caregivers. Furthermore, our findings reveal a pronounced need among these parents for psychological support and an increased appetite for knowledge related to caregiving, indicating that such interventions could be effectively integrated into clinical practices. Notably, the substantial caregiving demands placed on these parents have been observed to impact their psychological resilience adversely. Contributions from social workers within this study have underscored their significant role in bolstering the psychological resilience of these parents. Future research is warranted to further validate the role of social support systems in enhancing the psychological resilience of parents navigating the complexities of pediatric leukemia care.

Clinical trial number

Not applicable.

Ethics approval and consent to participate

This research received approval from the Ethics Committee of the Sichuan Provincial Academy of Medical Sciences and Sichuan Provincial People's Hospital.

Consent for publication

Not applicable.

Availability of data and material

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Competing interests

The authors declare no competing interests.

Funding

This study has received research support from the Key Research and Development Program of Sichuan Province (23ZDYF2075), CN and Chengdu Municipal Science and Technology Program, Sichuan Province (2022-YF0501621-SN), CN.

Authors' contributions

Chunming Yuan: Study design, Methodology, Conceptualization, Formal analysis, Writing - Review & Editing; Validation

Zhi Wang: Formal analysis, Investigation, Conceptualization，Writing - Original Draft, Data Curation

Hao Wen: Formal analysis, Investigation

Lihua Min: Methodology, Conceptualization, Supervision, Writing- Reviewing and Editing, Project administration

Xiaorong Mao: Study design, Methodology, Conceptualization, Supervision, Writing- Reviewing and Editing, Project administration, Funding acquisition

The co-first author of this study, Yuan Chunming and Wang Zhi contributed equal to this work.

Acknowledgement

We would like to express our gratitude to the parents who took valuable time to participate in our study.

Clinical Resources

World Health Organization. (2021). Childhood cancer. Retrieved December 20, 2023, from https://www.who.int/news-room/fact-sheets/detail/cancer-in-children. html

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Table 1

Characteristics of participants (N = 24)
No.	Children			Parents
	Gender	Age, y	Only child	Relationship with children with leukemia	Age, y	Education	Occupation	Taking care of children with leukemia alone	Family structure	Monthly family income (yuan)
P1	Female	3	No	Mother	32	Middle School	Farmer	No	Nuclear Family	<5000
P2	Female	3	No	Mother	30	Vocational school	Unemployed	Yes	Nuclear Family	<5000
P3	Male	9	Yes	Mother	34	Diploma	Unemployed	Yes	Extended Family	5000–10000
P4	Male	9	No	Father	36	Middle School	Unemployed	Yes	Extended Family	5000–10000
P5	Male	3	No	Mother	28	Diploma	Unemployed	Yes	Blended Family	<5000
P6	Female	4	Yes	Mother	29	Vocational school	Unemployed	Yes	Extended Family	5000–10000
P7	Male	9	No	Mother	32	Diploma	Unemployed	No	Nuclear Family	<5000
P8	Male	6	No	Mother	42	Middle School	Farmer	Yes	Nuclear family	<5000
P9	Female	4	No	Mother	28	Middle School	Unemployed	Yes	Extended Family	<5000
P10	Female	12	Yes	Mother	31	Vocational school	Farmer	Yes	Extended Family	<5000
P11	Male	8	No	Mother	29	Vocational school	Farmer	Yes	Extended Family	5000–10000
P12	Male	16	Yes	Father	43	Vocational school	Enterprise/company employees	Yes	Nuclear Family	<5000
P13	Male	9	Yes	Mother	37	Undergraduate	Unemployed	Yes	Single Parent	<5000
P14	Male	8	No	Father	42	Diploma	Government worker or civil servants	Yes	Extended Family	>10000
P15	Female	10	No	Mother	48	Primary School	Farmer	No	Nuclear Family	<5000
P16	Female	4	Yes	Mother	29	Vocational school	Unemployed	Yes	Extended Family	5000–10000
P17	Male	4	No	Mother	29	Diploma	Unemployed	Yes	Nuclear Family	>10000
P18	Male	5	No	Mother	35	Undergraduate	Unemployed	Yes	Extended Family	<5000
P19	Female	12	No	Mother	35	Vocational school	Workers	Yes	Single Parent	<5000
P20	Female	4	Yes	Mother	34	Undergraduate	Government organization Worker or civil servants	Yes	Extended Family	5000–10000
P21	Male	13	No	Mother	36	Primary School	Farmer	No	Blended Family	<5000
P22	Male	10	No	Mother	36	Middle School	Farmer	Yes	Nuclear Family	<5000
P23	Female	9	Yes	Father	40	Diploma	Farmer	Yes	Nuclear Family	<5000
P24	Male	7	Yes	Father	37	Undergraduate	Unemployed	Yes	Nuclear Family	5000–10000
Age, y, mean (SD)		7.54 (3.60)		34.67 (5.39)
Note. No., number. Children, children with leukemia; Parents, parents of children with leukemia. Y, years.

No competing interests reported.

The Lived Experience of Psychological Resilience in Parents of Children with Leukemia: A Qualitative Study

Status:

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Abstract

Clinical Relevance

INTRODUCTION

METHODS

Study population

Data collection

Data analysis

RESULTS

DISCUSSION

CONCLUSION

Declarations

References

Tables

Additional Declarations

Status:

Version 1