Abstract
Background
Parents of children with retinoblastoma (RB) often experience significant psychological stress due to the disease severity and caregiving demands. Resilience plays a critical role in helping parents cope effectively, yet little is known about its influencing factors in this population. Therefore, this study aimed to investigate the psychological resilience of parents of children with RB and identify influencing factors to support the development of targeted interventions.
Methods
This cross-sectional descriptive study recruited a convenience sample of parents whose children were admitted to the ophthalmology ward between July and August 2025. Data were collected using five instruments: the General Information Questionnaire, the Connor-Davidson Resilience Scale-10 (CD-RISC-10), the Family APGAR Index (APGAR), the Coping Health Inventory for Parents (CHIP), and the Perceived Social Support Scale (PSSS). The data were analyzed through both descriptive and inferential statistics.
Results
Data from 120 completed questionnaires showed that parents of children with RB had low levels of psychological resilience. Parental resilience was positively correlated with both the frequency and effectiveness of positive coping style and negatively associated with prolonged caregiving time. Multiple linear regression analyses identified caregiving time and frequency of positive coping styles as key influencing factors.
Conclusions
Parents of children with RB may benefit from strategies that support positive coping and reduce the duration of caregiving. These approaches may help improve their psychological resilience.
Keywords: Retinoblastoma (RB), psychological resilience, parents, associated factors, social support
Highlight box.
Key findings
• This research results suggest that providing parents of children with retinoblastoma (RB) with effective social support to reduce the time they spend caring for their children, as well as encouraging them to adopt positive coping strategies, can enhance their psychological resilience.
What is known and what is new?
• There is a significant correlation between the duration of caregiving and the coping styles and psychological resilience of parents of children with RB.
• The study highlights the need for healthcare providers to adopt targeted psychosocial interventions to strengthen parental psychological resilience.
• It provides crucial evidence to inform the development of culturally appropriate and resilience-focused support strategies for families in paediatric oncology settings globally.
What is the implication, and what should change now?
• Nurses and other healthcare professionals should implement supportive interventions tailored to parents’ coping style and care duration to improve their psychological resilience and strengthen family-centered care.
Introduction
Background
Retinoblastoma (RB) is the most common primary intraocular malignancy in children, predominantly affecting infants and young children under 3 years. It is a serious pediatric eye disease associated with blindness, disability, and death (1). Globally, the incidence of RB is on the rise, affecting approximately 1 in every 18,000 children (2).
Although the 5-year survival rate for children with RB is approximately 100% in high-income countries (3) and 86% in China (4), survival alone is no longer the sole focus of care. With advances in medical technology, preserving the eye and vision, in addition to saving the child’s life, has become an important goal. However, the complex, prolonged, and costly nature of RB treatment imposes a substantial physical and mental burden on parents (5), who serve not only as caregivers but also as key partners in the therapeutic process (6).
Rationale and knowledge gap
The diagnosis and treatment of RB in children can be a profoundly distressing experience for parents. Seventy-three percent of parents of children with RB experience depression, 64% report anxiety, and nearly all report moderate to severe levels of stress (7). Furthermore, parental hope, a crucial protective psychological factor, is frequently found to be low within this particular population (8). Despite these challenges, some parents demonstrate strong psychological adaptability under the same stressful conditions, a difference that is closely related to “psychological resilience”. Parental resilience plays a crucial role in improving children’s treatment outcomes (9).
Psychological resilience is a positive psychological quality that enables individuals to maintain or regain mental health despite adversity (10). In the context of pediatric cancer care, low parental resilience has been associated with severe psychological problems and suboptimal caregiving behaviors, both of which can directly influence a child’s quality of care and recovery (11).
Family care provides a systematic framework for assessing communication and emotional responses within the family system. Dysfunctional family dynamics can weaken parental adaptability by heightening perceived stress (12). Perceived social support reflects the individual’s utilization of social resources from the perspective of subjective support, and high social support can mitigate the negative impact of stress on mental health (13). Additionally, coping strategies—whether adaptive (e.g., problem-solving) or non-adaptive strategies (e.g., avoidance)—directly influence psychological resilience (14). Despite the growing recognition of these associations, little research has examined the psychological resilience of parents of children with RB in China, its mechanism, and influencing factors.
Objective
This study aimed to assess the current state of psychological resilience among parents of children with RB using a cross-sectional survey and explore the associations between resilience and family functioning, perceived social support, and coping styles. By highlighting key predictors—such as family dynamics, the availability and perception of social support, and coping mechanisms—the study provides a theoretical basis that could inform the development of targeted interventions to strengthen parental resilience. The overarching research question guiding this investigation was: what are the levels and determinants of psychological resilience among parents of children with RB in China? We present this article in accordance with the STROBE reporting checklist (available at https://tp.amegroups.com/article/view/10.21037/tp-2025-677/rc).
Methods
Study design
This study employed a cross-sectional descriptive survey design to investigate the psychological resilience and its influencing factors among parents of children with RB.
Study setting and sampling
The study was conducted in the ophthalmology ward between July and August 2025. Participants were recruited using a convenience sampling method, and parents of 120 children with RB who met the inclusion criteria were enrolled. The sample size was determined according to the principle for scale-based surveys, which recommends a sample size 5–10 times the number of questionnaire items (15). Considering the potential for 20% invalid responses, the final target sample size was set at 60–120. Ultimately, 120 complete and valid questionnaires were recovered, yielding a 100% valid response rate.
Inclusion and exclusion criteria
The inclusion criteria were: parents of children with a clinically confirmed diagnosis of RB and no severe underlying health conditions who served as primary caregivers, aged 18 years or over, who gave informed consent and voluntarily participated in the study.
The exclusion criteria were: parents with a history of mental health issues or severe cognitive impairment.
Instruments and data sources
Five instruments were used to collect data, as outlined below.
General Information Questionnaire
This questionnaire collected demographic and clinical details of the child (including sex, affected eye, and duration of illness) and the parent (including relationship with the child, living environment, education level, and family type).
Connor-Davidson Resilience Scale-10 (CD-RISC-10)
The CD-RISC-10 is a simplified 10-item version of the original 25-item psychological resilience scale developed by Campbell-Sills and Stein (16) and later translated and verified by Ye et al. (17,18). The validity of the Chinese version of CD-RISC-10 in the measurement of psychological resilience of parents of children with cancer in China has been recognized. The scale comprises 10 items rated on a 5-point Likert scale (0= never to 4= always), yielding a total score ranging from 0 to 40 points, with higher scores indicating greater resilience. The Cronbach’s α of the scale has been reported as 0.850 (19), and in this study, the Cronbach’s α was 0.902.
Family APGAR Index (APGAR)
The scale was developed by Smilkstein et al. (20) and revised by Fan et al. (21), aiming to assess the degree of care felt by individuals from family members, to measure individual satisfaction with family functioning. The scale evaluates five dimensions: fitness, cooperation, growth, affectivity, and intimacy, and uses a 3-point Likert scale from “almost rarely” to “often” on a scale of 0–2. Total scores range from 0 to 10, with scores of 0–6 indicating low-income family care and higher overall scores indicating better family care. The Cronbach’s α of this scale has been reported as 0.929 (22); in this study, the Cronbach’s α was 0.908.
Coping Health Inventory for Parents (CHIP)
The scale was developed by Hamilton and McCubbin (23) in 1983 and translated into Chinese by Li et al. (24). It assesses the positive coping styles adopted by parents to maintain a normal family life in families with children with chronic diseases. The scale consists of 45 items across three dimensions, namely “maintaining family unity, cooperation and optimism”; “seeking social support to maintain self-esteem and psychological stability”; and “understanding the situation of the disease through consultation with medical personnel and communication with other parents”.
The frequency of use of positive coping methods was rated on a 5-point Likert scale, ranging from “never” (1 point) to “always” (5 points). The extent to which positive coping styles play a role in maintaining normal family life was based on a 4-point Likert scale, ranging from “not useful” (0 points) to “very useful” (3 points). The total score of the frequency of positive coping style use ranged from 45–225 points, with higher scores indicating higher frequencies of positive parental coping style. The total score of the effect size ranged from 0–135 points, with higher scores suggesting higher parents’ belief that the coping style was more effective in maintaining normal family life. The Cronbach’s α coefficient of the Chinese version of the scale is 0.91 (24), suitable for domestic use. The Cronbach’s α of this scale in this study was 0.966.
Perceived Social Support Scale (PSSS)
PSSS, developed by Zimet et al. (25) and translated into Chinese by Zhong et al. (26), is a 12-item scale assessing three dimensions, namely family support, friend support, and other support. It employs a 5-point Likert scale, with the total score calculated as the sum of all item scores, reflecting the total level of perceived social support. Higher total scores indicate greater perceived social support for an individual, with a total score between 12 and 36 indicating low support status; 37 to 60, indicating intermediate support status; and 61 to 84, indicating a high support status. The scale has been validated in the domestic population (27), with Cronbach’s α of 0.910. In this study, the Cronbach’s α of this scale was 0.912.
Data collection
Trained research staff conducted face-to-face surveys within 24 hours of the child’s admission, following informed consent. Only one parent per child was surveyed. Participants who required assistance were supported by trained investigators who read items aloud and provided clarifications as needed. All questionnaires were checked for completeness following administration.
Ethical considerations
This study was approved by the Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University, School of Medicine Ethics Committee (No. SH9H-2023-T15-2). All participating parents provided written informed consent. This study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments.
Statistical analysis
Statistical analyses were performed using R software (version 4.2.3). Descriptive statistics were reported as mean ± standard deviation for continuous variables. Spearman correlation analysis was used to explore correlations between psychological resilience and variables such as duration of illness, caregiving duration, and parental age. Variables with P<0.05 in the univariate analysis were entered into a multiple linear regression model to identify significant predictors of psychological resilience. A two-sided P<0.05 was considered statistically significant.
Results
Parental and child’s characteristics
Overall, 120 parents of children diagnosed with RB participated in this study. Among them, 65.83% were mothers. The participants’ living environment was evenly distributed between urban and rural areas. Notably, 47.5% of parents held a college degree or higher. Families with only one child accounted for 46.67% of the sample. Nuclear families were dominant (50.83%). Regarding caregiving arrangements, 72.27% of families reported receiving assistance from others in caring for the child. Detailed demographic and caregiving characteristics are presented in Table 1.
Table 1. Univariate analysis of psychological resilience among parents of children with retinoblastoma (N=120).
| Category | Characteristics | Subgroup | N (%) | Psychological resilience score | Statistic | P value |
|---|---|---|---|---|---|---|
| Children | Sex | Male | 61 (50.83) | 25.56±7.44 | 0.82† | 0.41 |
| Female | 59 (49.17) | 24.58±5.49 | ||||
| Ocular disease | Monoculus | 75 (62.50) | 25.08±6.52 | 0.01† | 0.99 | |
| Binoculus | 45 (37.50) | 25.07±6.66 | ||||
| Parents | Relationship | Mother | 79 (65.83) | 24.24±6.54 | −1.96† | 0.052 |
| Father | 41 (34.17) | 26.68±6.33 | ||||
| Residence | City | 59 (49.17) | 25.10±6.93 | 0.04† | 0.97 | |
| Countryside | 61 (50.83) | 25.05±6.21 | ||||
| Education | Junior high school and below | 37 (30.83) | 23.38±5.47 | 1.99‡ | 0.14 | |
| High school | 26 (21.67) | 25.23±7.97 | ||||
| College or higher | 57 (47.50) | 26.11±6.36 | ||||
| Number of children | 1 | 56 (46.67) | 23.50 (20.00, 28.00) | 1.92¶ | 0.38 | |
| 2 | 51 (42.50) | 26.00 (20.00, 29.50) | ||||
| ≥3 | 13 (10.83) | 28.00 (25.00, 32.00) | ||||
| Family type | Nuclear family | 61 (50.83) | 24.46±6.63 | 1.49‡ | 0.23 | |
| Stem family | 47 (39.17) | 26.30±6.22 | ||||
| Others | 12 (10.00) | 23.42±7.08 | ||||
| Type of care | Self-care | 33 (27.73) | 23.00 (19.00, 27.00) | −1.70§ | 0.09 | |
| Care with assistance | 86 (72.27) | 26.00 (21.00, 30.00) | ||||
| APGAR | Poor | 35 (29.17) | 21.00 (17.50, 23.50) | −3.59§ | <0.001 | |
| Good | 85 (70.83) | 26.00 (22.00, 30.00) | ||||
| PSSS | Low support | 3 (2.50) | 17.00 (16.00, 23.00) | 17.71¶ | <0.001 | |
| Moderate support | 54 (45.00) | 22.00 (19.25, 26.00) | ||||
| High support | 63 (52.50) | 28.00 (23.50, 31.00) |
Data are presented as or median (P25, P75) unless otherwise specified. †, t value; ‡, F value; §, Z value; ¶, χ2 value. APGAR, Adaptation, Partnership, Growth, Affection, Resolve; PSSS, Perceived Social Support Scale.
Univariate analysis of parental psychological resilience
A univariate analysis was conducted on the psychological resilience scores of parents of children with RB. The results indicated statistically significant differences (P<0.05) in psychological resilience scores between parents with different family care indices and perceived levels of social support, and those with children with RB. Detailed results are shown in Table 1.
Scores for each item of the CD-RISC-10 scale
Item-level analysis of the CD-RISC-10 revealed that the statement, “Able to adapt to change”, had the highest mean score (2.83±0.88). In contrast, the lowest-scoring items were “Tries to see humorous side of problems” (2.29±0.95) and “Can achieve goals despite obstacles” (2.29±0.87). A detailed breakdown of item scores and rankings is provided in Table 2.
Table 2. Score and ranking of each item of the CD-RISC-10 scale among parents of children with retinoblastoma.
| Entry | Score () | Scores rankings |
|---|---|---|
| Able to adapt to change | 2.83±0.88 | 1 |
| Not easily discouraged by failure | 2.73±0.96 | 2 |
| Can handle unpleasant feelings | 2.62±0.89 | 3 |
| Can deal with whatever comes | 2.60±0.85 | 4 |
| Thinks of self as strong person | 2.50±1.00 | 5 |
| Tend to bounce back after illness or hardship | 2.46±0.85 | 6 |
| Can stay focused under pressure | 2.45±0.85 | 7 |
| Coping with stress can strengthen me | 2.33±0.92 | 8 |
| Tries to see humorous side of problems | 2.29±0.95 | 9 |
| Can achieve goals despite obstacles | 2.29±0.87 | 9 |
CD-RISC-10, Connor-Davidson Resilience Scale-10.
Correlation between psychological resilience and influencing factors
Psychological resilience among parents of children with RB was negatively correlated with caregiving duration (r=−0.271, P=0.003). Conversely, psychological resilience scores were positively correlated with the frequency of use of positive coping strategies (r=0.526, P<0.01), and the effect size of positive coping strategies (r=0.446, P<0.01). These correlations are summarized in Table 3.
Table 3. Correlation coefficients for factors associated with psychological resilience in parents of children with retinoblastoma.
| Items | r | P |
|---|---|---|
| Duration of illness | −0.008 | 0.93 |
| Parental age | 0.084 | 0.37 |
| Caregiving duration | −0.271 | 0.003 |
| Frequency of use of positive coping strategies | 0.526 | <0.01 |
| Effect size of positive coping strategies | 0.446 | <0.01 |
Multivariate analysis of factors associated with psychological resilience
The results indicated two factors, caregiving duration and frequency of positive coping strategies, as significant predictors of parental resilience. Specifically, shorter caregiving duration and more frequent use of positive coping strategies were associated with higher resilience scores. See Table 4 for detailed regression coefficients and model statistics.
Table 4. Multivariate analysis of factors influencing psychological resilience among parents of children with retinoblastoma.
| Items | β | 95% CI for β | SE | t | P |
|---|---|---|---|---|---|
| APGAR | |||||
| Good | Ref | – | – | – | |
| Poor | 0.69 | −2.01 to 3.39 | 1.38 | 0.5 | 0.62 |
| PSSS | |||||
| Low support | Ref | – | – | – | |
| Moderate support | 0.95 | −5.67 to 7.57 | 3.38 | 0.28 | 0.78 |
| High support | 1.44 | −5.59 to 8.48 | 3.59 | 0.4 | 0.69 |
| Duration of care | −0.37 | −0.65 to −0.09 | 0.14 | −2.61 | 0.01 |
| Frequency of use of positive coping strategies | 0.11 | 0.05 to 0.17 | 0.03 | 3.44 | <0.001 |
| Effect size of positive coping strategies | 0.04 | 0.01 to 0.09 | 0.03 | 1.51 | 0.13 |
APGAR, Adaptation, Partnership, Growth, Affection, Resolve; CI, confidence interval; PSSS, Perceived Social Support Scale; SE, standard error.
Discussion
Psychological resilience is low among parents of children with RB
The findings of this study showed that the mean psychological resilience score among parents of children with RB was 25.08±6.55, which is lower than the resilience score reported among parents of children with cancer in other countries (30.00±6.00) (28). This finding suggests that the psychological resilience of parents of children with RB in this study may be comparatively lower than that of their international counterparts. Psychological resilience, a key protective factor for mental health, enables individuals to respond more adaptively when faced with setbacks (29).
In China, malignant tumors rank as the second leading cause of death among children, surpassed only by unintentional injuries (30). A child’s tumor diagnosis often triggers a series of psychological responses in parents, including denial, shock, and extreme grief (31). As treatment progresses, parents’ uncertainty regarding disease progression can exacerbate their concerns about the efficacy of treatment and recurrence. Moreover, parents may rely heavily on a single medical coping style and often lack a sufficient external support system to buffer emotional stress, thereby weakening their resilience (32).
RB is a rare disease, and parents often have limited access to disease-related information, leading to insufficient awareness and challenges in home-based care. RB treatment options, including chemotherapy, enucleation, and orbital exenteration, can contribute to parental psychological burden, particularly due to concerns about the potential impact on their families and work (33). Additional contributing factors may include different chronological backgrounds of the study and individual differences in optimism and coping styles. Strengthening social support networks, such as the establishment of parent support groups, can improve psychological resilience among parents, supporting the health and emotional stability of families.
Longer caregiving duration is associated with lower parental resilience
The study found an inverse relationship between the length of time spent caring for a child with RB and the parents’ level of psychological resilience. This aligns with previous research (34), suggesting that long-term caregiving for children with specific disorders has a remarkable impact on parental resilience.
Several factors may contribute to this association. First, parents of children with RB often devote a lot of time to caring for the children and take on other roles in the family, including work, caring for other children, which is a long-term and persistent stressor. These cumulative stressors may lead to a gradual decline in the psychological resilience of parents. Second, the length of care is closely related to the psychological distress of parents, and prolonged care may lead to the depletion of parents’ emotional resources, thereby reducing the level of psychological resilience (35). Third, concerns about the treatment efficacy and the risk of recurrence may also lead to fatigue, which can cause a huge psychological and physical burden on parents and affect psychological resilience.
These findings suggest that healthcare professionals should identify caregivers at risk of reduced psychological resilience and offer targeted psychological support strategies. Such interventions include village-community joint support services (36) and community-hospital care models to alleviate parental care time, psychological stress, and improve resilience.
Positive coping styles are associated with higher psychological resilience
This study found that parents of children with RB who used positive coping styles more frequently exhibited higher levels of psychological resilience. This suggests that parents of children with RB who tend to use positive coping styles adapt to this stress and show higher psychological resilience. This finding is consistent with previous studies (37) and reinforces the notion that adaptive coping strategies—such as positive thinking and seeking social support—are instrumental in improving psychological resilience.
Positive coping styles may regulate the emotions and reconstruct the cognition of parents of children with RB. Positive coping styles can reduce negative emotions such as depression and anxiety and enhance psychological resilience. In addition, studies among parents of children with leukemia have highlighted the role of family solidarity and optimism in coping with the long-term effects of the disease.
Parents of children with RB cope with their children’s illness by changing their perception of events and adjusting their emotional responses. Positive coping styles include seeking social support, maintaining self-esteem, and ensuring psychological stability. This suggests that medical teams and society should actively implement strategies to improve the psychological resilience of parents of children with RB. Such strategies may include positive motivation, psychological counseling, and psychological training. These interventions can increase parents’ psychological capital, enabling them to adopt positive coping styles in the face of difficulties, so as to improve the psychological resilience of parents.
Strengths and limitations
This study provides novel insights into the psychological resilience of parents of children with RB, a relatively underexplored population in pediatric oncology research. It highlights key modifiable factors including coping style and care duration that may influence parental resilience. This lays the groundwork for targeted psychosocial interventions and provides a theoretical basis for developing and evaluating tools to assess parental psychological resilience in the context of RB.
However, there are several limitations of this study. First, the cross-sectional study design limits the inference of causality. Second, the data are based on self-reported measurement methods, which may introduce reporting bias.
Implications and future suggestions
These findings underscore the need for policy and clinical strategies aimed at improving parental psychological resilience in families affected by RB. Given the multifactorial nature of the psychological impact on parents of children with RB, it is necessary for future research to rely on a multidisciplinary team consisting of psychiatrists, clinical psychologists, nurses, and social workers to systematically and comprehensively assess their psychological resilience and related influencing factors. Healthcare systems should integrate psychosocial support into pediatric oncology care pathways and establish family-centered care models that address both medical and emotional needs. Community outreach programs, support groups, and caregiver training may also enhance resilience by promoting knowledge, reducing isolation, and fostering adaptive coping. Policymakers should prioritize resource allocation for caregiver support infrastructure, especially for rare cancers such as RB, while also ensuring equitable access to mental health services across both urban and rural settings.
Conclusions
Parents of children with RB exhibited low levels of psychological resilience. The primary factors associated with this were the amount of time spent providing care and the frequency of using positive coping styles. Based on these findings, clinical medical teams are encouraged to implement comprehensive, targeted interventions that support the psychological well-being of parents with these characteristics. Improving parental resilience may improve their ability to care for their children and effectively cope with the challenges associated with the disease.
Supplementary
The article’s supplementary files as
Acknowledgments
None.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. This study was approved by the Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University, School of Medicine Ethics Committee (No. SH9H-2023-T15-2). All participating parents provided written informed consent. This study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments.
Footnotes
Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://tp.amegroups.com/article/view/10.21037/tp-2025-677/rc
Funding: This study was supported by the Nursing Program of Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine (Nos. JYHL2024ZD03 and JYHL2024ZD03-Z1); the Research Nurse of Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine (No. JYYJX202407); Shanghai Jiao Tong University School of Medicine: Nursing Development Program (No. SJTUHLXK2024); and Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine: Excellent Nursing Talent LinkedIn Program (No. JYHRC22-L03).
Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tp.amegroups.com/article/view/10.21037/tp-2025-677/coif). The authors have no conflicts of interest to declare.
Data Sharing Statement
Available at https://tp.amegroups.com/article/view/10.21037/tp-2025-677/dss
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