Factors influencing delayed medical treatment in children with retinoblastoma: a qualitative study

Abstract

Background

Retinoblastoma (RB) is the most common primary intraocular malignancy in children. Its 5-year survival rate exceeds 90% if diagnosed early. However, delayed care-seeking allows the disease to advance to late stages and can become life-threatening. This study employed qualitative methods to characterise the experiences underlying delayed presentation among children with RB.

Methods

Between March 2021 and December 2022, caregivers of children with RB in the ophthalmology inpatient department of a tertiary hospital in Shanghai were recruited using the purposive sampling method to participate in a semi-structured interview. The data were processed and analysed using the Colaizzi method, and themes were identified.

Results

Four themes emerged from the interviews: delayed caregiver assessment, delayed pediatric medical-seeking, delayed diagnosis of childhood disease, and delayed treatment of childhood disease.

Discussion

This study identifies four critical stages contributing to delayed RB diagnosis and proposes targeted interventions for healthcare providers: strengthening public education to enhance RB awareness, establishing an efficient healthcare support system with rapid referral pathways, expanding eye disease screening programmes and optimising resource allocation for early detection and treatment, and implementing family-centred care models alongside promoting shared clinical decision-making. A multi-pronged approach incorporating these measures could effectively reduce diagnostic and treatment delays.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12885-025-14964-6.

Background

Retinoblastoma (RB) is the most common primary intraocular malignancy in children, accounting for 2.5–4% of all paediatric cancers, with an incidence rate of approximately 1 in 15,000 to 1 in 20,000 live births [1]. The most common referral indications are leukocoria (62.8%), strabismus (10.2%), and proptosis (7.4%) [2]. If not treated promptly, it can lead to severe consequences and even endanger the life of the child. Without treatment, 36%, 77%, 95%, and 100% of children with RB die within 12, 24, 36, and 48 months, respectively, of diagnosis [3]. The survival rate of RB in developed countries has increased from 5% to 90% through early detection, diagnosis, and treatment, whereas the survival rate in developing countries is low (approximately 40% in low-income countries) [4]. Therefore, early and timely treatment is the key to improving patient prognosis.

The existing literature reveals the harsh reality of delayed diagnosis and treatment of RB, with an average lag time of 150 days from the first discovery of symptoms by the patient’s family to seeking medical attention at a qualified institution for RB diagnosis and treatment [5]. More importantly, a significant difference exists in the diagnosis and treatment staging of paediatric patients between developing and developed countries. Patients from developed countries were diagnosed at a median age of 14.1 months; 98.5% and 0.3% had intraocular RB and metastasis, respectively. Patients from developing countries were diagnosed at a median age of 30.5 months; 49.1% and 18.9% had extraocular RB and metastasis, respectively [2]. This delay directly leads to significant clinical outcome disparities, manifested through increased rates of advanced-stage tumours, decreased survival rates, and reduced likelihood of eye preservation [6]. Currently, the prognosis for patients with RB remains concerning, particularly in resource-limited settings, underscoring the urgent need to investigate the factors contributing to treatment delays.

Recent research on RB has predominantly focused on its molecular mechanisms and clinical treatments. A literature review of publications from 2001 to 2021 reveals that high-frequency keywords in the RB field remain primarily centred on terms such as ‘intravitreal’, ‘intraarterial’, and ‘intravenous’, while systematic investigations into caregivers’ healthcare-seeking experiences remain notably scarce [7]. More critically, theoretical model-based research on delay mechanisms is limited. Building upon Andersen’s model, Walter’s treatment pathway theory systematically categorises healthcare delays into four distinct phases—assessment, medical-seeking, diagnosis, and treatment—providing a robust framework for analysing RB treatment delays [8]. Grounded in this theoretical foundation, our study innovatively applies Walter’s model, employing qualitative research methods to comprehensively examine delay factors throughout the entire trajectory from symptom onset to treatment in RB cases. The research results not only supplement the body of research on RB in China but also provide empirical evidence for formulating precise intervention policies and improving the health outcomes of children with RB.

Methods

Design

This study employed a phenomenological approach within qualitative research. Phenomenological research aims to explore and describe human subjective experiences in depth [9]. This study focused on gaining an in-depth understanding of the experiences of caregivers of children affected by RB, with the aim of analysing factors contributing to delayed medical treatment.

Participants and recruitment

This study employed purposive sampling to select caregivers of children with RB who were hospitalised at our institution from March 2021 to December 2022 for semi-structured interviews. The inclusion criteria were as follows: caregivers who are aged 18 years or older, caring for children diagnosed with advanced RB (extraocular stage or International Intraocular Stages D and E), are directly involved in the child’s daily care, and voluntarily participated and signed the informed consent form. In contrast, the exclusion criteria included caregivers of children with concurrent other malignancies or genetic syndromes, temporary or paid caregivers, and caregivers with a history of cognitive impairment or mental illness. The sample size was determined based on data saturation. Thematic saturation was achieved when three consecutive interviews yielded no new substantive themes or insights. After the 22nd interview, additional codes only repeated existing themes. Three confirmatory interviews were conducted, and the final sample comprised 25 caregivers.

Research procedure

The research procedure comprised several key stages. First, participants were recruited through purposive sampling. For data collection, a semi-structured interview guide (see Appendix A) was utilised to conduct one-on-one, in-depth interviews, all of which were audio-recorded. Data processing involved transcribing recordings verbatim within 24 h, followed by thematic analysis. Throughout the process, ethical protocols were rigorously observed, including obtaining informed consent and ensuring confidentiality.

Interview process

The interviewer conducted and audio-recorded face-to-face semi-structured interviews with each participant in a quiet, comfortable, and private treatment room. Before the formal interview, the purpose, methodology, and content of the interview were explained to the participants, their consent was obtained, and an informed consent form was signed. During the interview, the interviewer encouraged respondents to articulate their experiences and feelings fully, fostering an atmosphere of ease while refraining from any form of guidance or indication. Concurrently, the interviewer observed non-verbal cues from the respondents, including facial expressions, tone of voice, intonation, and emotional responses, meticulously documenting their observations. The duration of the interview for each participant was approximately 20–40 min.

Researchers

Before conducting the interviews, the interviewers underwent systematic training in qualitative research methods and were thoroughly versed in the research methodology and the skills pertinent to qualitative interviewing. The interviewers were nurses who were responsible for caring for children with RB and who had frequently interacted with the caregivers of children with RB in their daily work, thus establishing a relationship of trust with the participants, who were willing to share their real experiences or feelings. Within 24 h of the interviews, the audio recordings were transcribed by the researcher and returned to the participants for confirmation of the accuracy of the data. The entire interview process was guided by a nursing expert with extensive experience in qualitative research, who reviewed the raw data and analysed the results.

Interview guide development

The interview guide was systematically constructed by the research team based on the theoretical framework of Walter’s Delayed Treatment Pathway Model, combined with the clinical characteristics of RB and the localised diagnosis and treatment scenarios in China. The final version of the guide was shaped after several rounds of thematic discussion, expert validation, and revision of the pre-interviews, which aimed to accurately capture the multidimensional influencing factors of the delayed treatment of the children (see Appendix A for the interview guide).

Analysis

The researcher repeatedly reviewed all transcripts, along with the recorded nonverbal behaviours and basic personal data of the participants, and used Colaizzi’s 7-step analysis [10] to organise and analyse the data and refine the themes. The analysis process was conducted in the following manner: (1) The interview results and non-verbal behaviours were read multiple times to ensure familiarity with the information. (2) Statements related to the theme of delayed access to healthcare were identified. (3) An in-depth analysis of the key statements was conducted to refine the themes related to the phenomenon. (4) The refined themes were categorised, with statements of the same theme placed together. (5) All themes and related statements were listed. (6) The themes were further condensed and summarised. (7) The distilled themes were returned to the respondents for verification to ensure that they accu-rately reflect their experiences.

Ethics

The Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine Ethics Committee approved this study (approval number: SH9H-2019-T289-2). Informed consent was obtained from all study participants, who were caregivers of children with RB and were 18 years of age or older.

Results

Demography of respondents

Overall, 25 participants, represented by letters A1–A25 to protect their privacy, were included in this study. The participants were all Han Chinese, with 15, 7, 2, and 1 being the mothers, fathers, grandfathers, and grandmother of children with RB, respectively. In total, 88% of the participants had attained at least a junior high school education level. The participants come from all over the country, including Zhejiang, Henan, Anhui, Shandong, Jiangsu, Shanghai, Guangdong, Liaoning, Jiangxi, Hubei, Guangxi, Gansu, Fujian, and Chongqing Provinces. A total of 25 children (15 boys, 10 girls; age 1–8 years) had 32 affected eyes. Furthermore, the time from symptom onset to presentation at a tertiary care facility ranged from 4 to 180 days. The demographic characteristics of all participants are summarized in Table 1.

Table 1.

Demographic characteristics of the caregivers and children

Number	Children					Caregivers
	Gender	Age (years)	Affected eye type	Tumor stage	Treatment delay duration(days)	Residence	Relationship to the child	Education background	Nation
A1	Male	8	Binoculus	D	31	Jiangsu	Mother	Bachelor’s Degree	Han
A2	Male	7	Binoculus	E	30	Anhui	Father	Primary School Education	Han
A3	Female	5	Oculus dexter	E	7	Jiangsu	Father	Junior Secondary Education	Han
A4	Female	2	Oculus sinister	D	30	Shanghai	Mother	Bachelor’s Degree	Han
A5	Male	5	Oculus dexter	D	180	Zhejiang	Mother	Junior Secondary Education	Han
A6	Male	2	Oculus sinister	E	60	Liaoning	Mother	Senior Secondary Education	Han
A7	Female	3	Oculus dexter	E	120	Henan	Grandfather	Primary School Education	Han
A8	Male	2	Oculus dexter	D	7	Jiangxi	Mother	Associate Degree	Han
A9	Male	1	Oculus sinister	E	7	Shandong	Father	Junior Secondary Education	Han
A10	Female	1	Oculus sinister	D	15	Hubei	Mother	Senior Secondary Education	Han
A11	Male	3	Oculus dexter	D	34	Guangdong	Mother	Bachelor’s Degree	Han
A12	Male	3	Oculus dexter	E	61	Chongqing	Father	Junior Secondary Education	Han
A13	Male	1	Oculus sinister	E	75	Guangdong	Mother	Junior Secondary Education	Han
A14	Female	3	Oculus sinister	E	30	Shanghai	Grandmather	Senior Secondary Education	Han
A15	Male	2	Binoculus	Oculus sinister E Oculus dexter D	10	Guangxi	Father	Junior Secondary Education	Han
A16	Male	2	Binoculus	D	90	Henan	Mother	Associate Degree	Han
A17	Male	2	Binoculus	Oculus sinister E Oculus dexter B	32	Gansu	Father	Senior Secondary Education	Han
A18	Female	2	Oculus sinister	E	60	Fujian	Father	Associate Degree	Han
A19	Female	8	Oculus sinister	E	180	Shandong	Mother	Junior Secondary Education	Han
A20	Male	8	Oculus dexter	E	14	Henan	Mother	Junior Secondary Education	Han
A21	Male	3	Oculus dexter	D	4	Shandong	Mother	Senior Secondary Education	Han
A22	Female	1	Binoculus	D	20	Zhejiang	Mother	Associate Degree	Han
A23	Male	3	Oulus sinister	E	35	Zhejiang	Mother	Junior Secondary Education	Han
A24	Female	2	Oculus dexter	D	14	Anhui	Mother	Associate Degree	Han
A25	Female	3	Binoculus	E	150	Anhui	Grandfather	Primary School Education	Han

In-depth interviews

Through in-depth interviews with the primary caregivers of children with RB, this study comprehensively mapped the entire process from disease identification to treatment. It has distilled four core themes and ten associated sub-themes, with the specific categorisation detailed in Table 2.

Table 2.

Factors influencing delayed medical treatment in children with RB

Themes	Subthemes	Examples
Delayed caregiver assessment	Neglect of the child’s symptoms	There was a reflection several months before I came to the hospital. At that time, I only saw it occasionally, so I did not pay special attention (A5, Mother). I saw the child’s eyes glow in the light at night, but I did not take it seriously at that time (A17, Father).
	Lack of disease knowledge	I have not heard of this disease before (A16, Mother). What is RB? We have no idea at all (A9, Father).
Delayed pediatric medical-seeking	Limited family economic conditions	The biggest worry now is economic pressure (A21, Mother). All our money is borrowed now (A2, Father).
	Insufficient family support	At that time, I was constantly taking the elderly family member for chemotherapy and simply had no bandwidth to attend to the child (A6, Mother).
	Tortuous medical treatment process	I did not know where to see a doctor or what clinic to book an appointment with (A7, Grandfather). Our doctors told us to go to a big city hospital, but we did not know where to go (A10, Mother).
Delayed diagnosis of childhood disease	Limited fundus screening	Our children do not have fundus examinations at birth (A24, Mother). Our children have never undergone this kind of examination (A3, Father).
	Systemic challenges in early RB identification at the primary-care level	We visited the local county hospital, and the county doctor said that our children’s eyes were normal (A22, Mother).
	Healthcare accessibility gradient	The hospital we visited before said that they did not have the treatment equipment (A16, Mother).
Delayed treatment of childhood disease	Caregivers’ objections to the treatment plan	The doctor suggested enucleation, but the family could not accept it (A17, Father).
	Delayed treatment due to personal problems	He was scheduled for a re-examination in September, and it was delayed by half a month because of a fever (A11, Mother).

Theme 1: delayed caregiver assessment

Neglect of the child’s symptoms

White pupil syndrome is the most common initial symptom in children with RB. Most participant reported that they accidentally discovered their children’s abnormal eyeball reflexes at night but did not pay attention to them.

“There was a reflection several months before I came to the hospital. At that time, I only saw it occasionally, so I did not pay special attention.” (A5, Mother).

“I saw the child’s eyes glow in the light at night, but I did not take it seriously at that time.” (A17, Father).

Some children showed strabismus, redness, and other symptoms that did not attract the attention of their parents.

“My eldest child has a slight squint, so I did not think it was a problem. We never paid attention to this little child’s squint.” (A19, Mother).

Some family members did not visit the hospital until their children were in pain.

“Grandma noticed that her eyes were red, but she did not care. Later, the child’s eyes hurt badly, and her left eye was swollen, so she took the child to the hospital for examination.“(A3, Father).

Lack of disease knowledge

Caregivers frequently exhibited a significant lack of disease-related knowledge when faced with the health needs of children with RB. This lack of knowledge can affect the quality of daily care and delay the early identification and intervention of diseases, thereby adversely affecting the health status of the children.

“I have not heard of this disease before, and I did not pay much attention to it. If I had known that it was so serious, I would not have delayed it for so long.” (A16, Mother).

“What is RB? We have no idea at all.” (A9, Father).

Theme 2: delayed pediatric medical-seeking

Limited family economic conditions

RB is a malignant tumour that requires long-term treatment and regular review. The caregivers of children with RB bear significant economic burdens. If a family is in poor economic condition, the child’s medical treatment will be affected to some extent.

“The biggest worry now is economic pressure. Now the child’s condition is OK, and we will review it when we have money.” (A21, Mother).

To treat their children, some families had accumulated substantial debt.

“If you do not have any work, just farm at home. All our money is borrowed now, and we already owe 110,000 RMB to treat our child.” (A2, Father).

Insufficient family support

During the interviews, five caregivers stated that there was a lack of family support for the child’s medical treatment, and the parents were under immense pressure.

“I remember that during the spring festival that year, my family was too busy, so I did not bring him for a re-examination. Later, I went for a re-examination when I was free, and my child’s good eyes had worsened.” (A1, Mother).

Most caregivers bear the responsibility of supporting older adults, especially when they are sick.

“At that time, I was constantly taking the elderly family member for chemotherapy and simply had no bandwidth to attend to the child.” (A6, Mother).

Tortuous medical treatment process

If some local hospitals lack RB treatment facilities, doctors will recommend that the caregivers visit comprehensive hospitals for treatment. However, the caregivers are unsure which hospitals can provide the treatment, and they often visit several hospitals before finally coming to our hospital.

“Our doctors told us to go to a big city hospital, but we did not know where to go.” (A10, Mother).

Even in large hospitals, caregivers of children with RB frequently feel lost in unfamiliar places.

“When I arrived at a large hospital, I did not know where to see a doctor or which clinic to book an appointment with. “(A7, Grandfather).

In large cities, securing an appointment with an expert is difficult, and the waiting time is long.

“It is still difficult to see an expert, and you may have to ask a scalper for help.” (A18, Father).

Some examinations and treatments involve long waits, which can delay treatment.

“It takes a long time to perform a magnetic resonance imaging and book an appointment for a fundus check. I have been waiting for a month.” (A15, Father).

Theme 3: delayed diagnosis of childhood disease

Limited fundus screening

Early detection and treatment can greatly improve the survival rates and quality of life of patients; however, fundus screening at birth is not fully accessible.

“Our children do not have fundus examinations at birth.” (A24, Mother).

RB commonly presents at a young age, and apart from screenings, there are relatively few opportunities to perform regular eye examination for children. Caregivers often overlook this aspect and fail to detect the disease in time.

“When the child was in primary school, he missed his physical examination due to a fever and a cold, and he has not had a physical examination since.” (A20, Mother).

“Our children have never undergone this kind of examination.” (A3, Father).

Systemic challenges in early RB identification at the primary-care level

RB is a rare disease. Primary-care clinicians are constrained in their ability to recognise and manage its early signs in the absence of sustained professional training and standardised referral pathways.

“We visited the local county hospital, and the county doctor said that our children’s eyes were normal.” (A22, Mother).

“The doctor at the local hospital initially diagnosed him with conjunctivitis, and prescribed medication, but his eyes never improved after a month and a half, we visited the eye hospital.” (A13, Mother).

Healthcare accessibility gradient

Doctors may recommend caregivers to seek medical care for the child in first-tier cities due to the tiered differences in the accessibility of fundus screening equipment and paediatric fundus specialty clinics.

“The hospital we visited before said that they did not have the treatment equipment, and then we went to the medical university. The doctor said there was no way to treat both eyeballs (crying).” (A16, Mother).

“The local doctor told us it was RB, and the only option locally was to remove the eyes. We were advised to go to Shanghai for eye protection treatment.” (A23, Mother).

Themes 4: delayed treatment of childhood disease

Caregivers’ objections to the treatment plan

When some children reach the hospital, their condition is already severe and necessitates invasive treatment. Nevertheless, the caregivers struggle with the recommendation for enucleation.

“The doctor suggested enucleation, but the family could not accept it. It is difficult for us to accept this.” (A17, Father).

The young age of the child causes caregivers to worry that intravenous chemotherapy will negatively impact their child’s health.

“The director of Chongqing suggested trying intravenous chemotherapy, but it felt like fighting poison with poison. How can children withstand these side effects?” (A12, Father).

Delayed treatment due to personal problems

Children with RB are young and frail. If their parents do not take care of them, they are more likely to become sick, which leads to delayed re-examination.

“He was scheduled for a re-examination in September, and it was delayed by half a month because of a fever. The previous reviews were all good, but this time, the result is not good.” (A11, Mother).

During flu-prone season or near re-examination, caregivers should ensure that the children rest at home and avoid crowded places to prevent colds from affecting treatment.

“The flu is particularly severe these days. Many children who were supposed to come for checkups were delayed because of colds.” (A4, Mother).

Discussion

In this study, all participants reported that they had never heard of RB before diagnosis and ignored eye symptoms. This may be attributed to RB being a rare disease, a lack of relevant knowledge and popular science, and insufficient awareness. Care-seeking delays stemming from poor awareness are common in low- and middle-income countries, a finding consistent with our study [11]. The government should organise community publicity campaigns on the early signs and symptoms of cancer to encourage families to seek medical treatment immediately [12]. Ethiopia is trying to improve its understanding of RB to achieve early diagnosis [13]. Magazines and news reports about RB are being used to enhance health-promotion training, particularly aimed at educating caregivers about the common signs of childhood eye cancer. Concurrently, science communication campaigns targeting the general public are being launched via mass media, while refresher training programmes are being provided for primary- and secondary-level health workers [14]. This highlights the importance of health education and the urgent need to popularise RB-related knowledge. The researcher suggests that to enhance public awareness of RB and reduce delays in seeking medical care, RB knowledge should be popularised among residents through various channels, including major hospitals’ official WeChat accounts, radio stations, health programmes, and print media. Additionally, in clinical practice, medical staff should tailor their communication methods based on caregivers’ age, occupation, and educational level, using tools such as ward bulletin boards, WeChat platforms, and verbal communication. Furthermore, community and primary-care campaigns should be launched to educate parents and front-line clinicians on recognising RB, particularly the hallmark sign of leukocoria. Mass media platforms, including radio and social media, should be utilised to disseminate RB information.

This study found that low family income, limited family support, and the rigour of seeking medical treatment hindered the medical treatment behaviour of children with RB, thereby affecting their treatment. Mattosinho suggested that family characteristics, such as parents’ education, economic income status, number of children aged < 5 years, and treatment abandonment, significantly influence the survival rates of children with RB [15]. This is consistent with the findings of our study, which also underscores the importance of family-level factors in treating RB. However, there are differences: our study focuses more on the difficulties encountered during the healthcare-seeking process, while Matosinho’s research also includes factors such as parental education level and the number of children under five. These differences may be related to the varying research focuses and the characteristics of the samples used. Scholars have found that many parents face serious economic difficulties in covering their children’s living expenses, treatment costs, and other needs, which exacerbates their painful medical experiences [13]. Beddard emphasised the importance of psychological and social support for children with RB, highlighting the long delays from detecting an abnormality to diagnosis and treatment experienced by caregivers of children with RB [16]. To optimise the clinical management and support for children with RB and their caregivers, we propose the following integrated policy recommendations for implementation. Establishing an effective medical support system is crucial, which includes forming a multi - disciplinary team composed of department directors, imaging doctors, eye oncology doctors, eye fundus doctors, head nurses, nutritionists, and paediatricians. This team can offer caregivers disease-related knowledge, consultation, and guidance, and for families without online access, telephone consultations should be provided. The team should hold regular monthly meetings to pinpoint common issues raised by parents and develop health education materials. Additionally, setting up a dedicated care fund for children with RB, such as the first one established by our hospital’s ophthalmology department in China, can offer financial assistance to families in need. Opening a green channel for same-day doctor visits and admissions for children with RB can reduce their waiting time. Moreover, enhancing psychosocial support is equally important. Parent counselling and psychological services should be integrated into RB treatment centres to help families cope with the emotional impact of the disease and prevent treatment delays caused by psychological distress, making psychosocial care a standard part of RB management to improve caregiver adherence. These measures have been well-received by caregivers and are expected to significantly enhance the overall care and treatment outcomes for children with RB.

This study found that fundus screening has not yet achieved comprehensive coverage, aligning closely with Scholar Guillermo’s perspective on the significant challenges facing RB screening [17]. In low-income countries, the 3-year survival rate of children with RB is lower than that in high-income countries, with early diagnosis and treatment being crucial for improving survival rates [18]. A systematic review recommends that children with familial retinoblastoma should undergo regular ophthalmic screening for RB from birth until the age of 4 [19]. Therefore, early screening of newborns and timely intervention can reduce the risk of disability and blindness from neonatal eye diseases. To enhance early detection and outcomes for RB, neonatal eye disease screening should be integrated into routine postnatal care. Governments and healthcare systems should invest more funds to expand access to these screenings, making them widely available and free of charge. For families with a history of RB, early screening after birth should be prioritised to increase the chances of protecting the eyes and vision and reduce the risk of fatal tumours spreading to the brain and other parts of the body. Additionally, this study found that the absence of sustained professional training, standardised referral pathways, and disparities in healthcare resource accessibility have constrained primary healthcare workers’ ability to recognise early signs of RB and implement appropriate management strategies. In Ethiopia, human and material resources required for RB care remain limited, which aligns with these findings [20]. Ophthalmologists at tertiary hospitals have shown significantly higher accuracy in identifying paediatric intraocular tumours than primary healthcare providers, a pattern consistent with our results [21].To optimise RB management in China, a multi-tiered strategy should be implemented. First, medical teams in primary, secondary, and tertiary healthcare institutions should be trained to improve their understanding of cancer symptoms and accelerate the referral and diagnosis process [12]. Concurrently, an expedited RB referral pathway should be established, enabling seamless transfer of suspected cases from primary-care settings to specialised tertiary centres without delay. Additionally, more treatment centres for RB and a national retinoblastoma registry should be established [22]. Overall, these measures—capacity building at all healthcare levels, streamlined referral mechanisms, and centralised treatment infrastructure—will form a comprehensive framework to improve clinical outcomes for pediatric patients with RB.

In this study, the caregivers’ disagreement with treatment may be related to the ‘parental model’ approach and their lack of relevant information. In clinical practice, adopting a ‘parental model’ of decision-making can lead to patients lacking relevant information and feeling disrespected, hindering their participation in joint decision-making [23]. A simple, low-cost decision-making assistant tool can help patients understand treatment plans and reduce conflicts [24]. Medical staff should change the decision-making approach from the ‘parental model’ and recognise the importance of joint decision-making, improve communication skills, publicise disease-related knowledge through various channels, and actively use decision-making aids to assist patients and caregivers in making informed choices. Nurses and doctors play a crucial role in family-centred nursing, which would eventually benefit the children and their families [25]. This is the first study to report ‘delayed chemotherapy due to cold/fever’ as a modifiable risk factor. Poor management by caregivers led to treatment delay for children with RB, which may be due to insufficient awareness of the importance of the family-centred nursing model, insufficient caregiver education, and a lack of parental involvement in management. It is recommended to develop personalised health education materials and plans, which should be delivered through multiple channels, including face-to-face consultations, online platforms, and community seminars, to meet the needs of children with RB and their caregivers. This approach should enable caregivers to actively participate in health management, thereby improving the quality of life for these children.

Study limitations

This study had several limitations. Firstly, there is a risk of sample homogeneity. All participants were recruited from a single healthcare institution and were of Han ethnicity. Minority ethnic groups, due to symbolic beliefs, religious taboos and different healthcare-seeking pathways, may have different interpretations of symptoms such as ‘leukocoria’ and may therefore exhibit different patterns of delay. Secondly, the study lacks diversity among caregivers, as the majority of participants were parents of the affected children. Other primary caregivers, including uncles, aunts, or foster families, were excluded. Their decision-making logic, sources of information and interactions with the healthcare system may differ significantly from those of parents, and key factors related to delay may have been overlooked. Finally, exact delay duration was not quantified in the inclusion criteria in our initial study design. We anticipate that in future research, this element will be incorporated into consideration, multi-centre studies will be conducted, and a mixed-methods approach will be employed to validate the findings from qualitative research with quantitative data.

Conclusions

By interviewing 25 primary caregivers of children with RB, this study identified delays occurring at four sequential stages: assessment, medical-seeking, diagnosis, and treatment. Urgent, targeted interventions are needed, including intensifying public education on RB, establishing effective care-navigation supports, universalising eye screening while optimising resource allocation, and vigorously promoting family-centred care with shared decision-making to ensure timely treatment.

Author contributions

C.J.Z and Y.H.W conceived and designed the study. The interviews and data collection were performed by H.J and J.Z.C. The analysis was performed by H.J, J.Z.C, N.D, S.S.X, Y.H.W, and C.J.Z. The first draft of the manuscript was written by H.J and J.Z.C, and all authors commented on the subsequent versions of the manuscript. All authors read and approved the final manuscript.

Funding

This work is supported by grants from the Shanghai Jiao Tong University School of Medicine: Nursing Development Program (grant number: SJTUHLXK2023、SJTUHLXK2024), Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine: Excellent Nursing Talent LinkedIn Program (grant number: JYHRC22-L03), and the Nursing Program of Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine (grant number: JYHL2024ZD03、JYHL2024ZD03-Z1).The above-mentioned funding sponsor played no role in the study design, including data collection, analysis, interpretation, and manuscript writing.

Data availability

The datasets generated and/or analysed during the current study are not publicly available due to privacy or ethical restrictions but are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This study was approved by the Shanghai Ninth People’s Hospital, Shanghai Jiao Tong University School of Medicine Ethics Committee (ethical approval number: SH9H-2019-T289-2). The procedures used in this study adhere to the tenets of the Declaration of Helsinki. Informed consent was obtained from all study participants, who were caregivers of children with RB and were 18 years of age or older.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.