Background
Uveitis is an inflammatory disorder of the eye that may be isolated or a manifestation of a systemic autoimmune disease [1]. In developed countries, 87–89% of pediatric uveitis cases are noninfectious, with the majority (41.5%) related to juvenile idiopathic arthritis (JIA) [2, 3]. Although pediatric uveitis accounts for only 2–20% of all uveitis cases, it is a topic of special interest because of its diagnostic and therapeutic challenges [3, 4]. Diagnosis of pediatric uveitis might be delayed due to asymptomatic presentation, pre-verbal age and difficulties in examining young children [5]. Additionally, pediatric uveitis is often chronic, persistent, recurrent, and resistant to conventional treatments. Vision-threatening complications increase with duration of the disease, with 25–33% of pediatric cases leading to severe vision loss. This profoundly affects children’s daily activities and academic performance while imposing multifaceted burdens on their families, including challenges in treatment management, financial strain, and emotional stress [6, 7]. Therefore, early detection and diagnosis, along with timely and aggressive treatment to achieve quiescence, are paramount to reducing the risk of potentially visually disabling ocular complications [8].
Children with noninfectious uveitis (NIU) require long-term therapies (topical and systemic, steroid-sparing immunosuppressive) to maintain control of inflammation [9, 10]. However, adherence to treatment is particularly challenging for children, who often rely on caregivers to administer medications regularly and accompany them to follow-up appointments. Previous studies have shown that non-adherence to prescribed eye drops may lead to suboptimal disease control and a more protracted course of inflammation, resulting in complications such as cataracts, hypotony, glaucoma, band keratopathy, posterior synechiae, and macular edema [1]. Accordingly, caregivers of children with NIU shoulder heavy responsibilities and burdens, including symptom assessment, medication management, nutritional planning, psychological support, and making clinical decisions. However, the burdens experienced by caregivers often go unrecognized, which may significantly impact their emotional and physical well-being [11]. Caregiver burden is defined as the physical, psychological, emotional, social and financial stresses that individuals experience due to providing care [12].
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Caregivers of children with NIU encounter uncertain outcomes (i.e., frequent relapses and variable treatment responses), and financial strain from treatment, along with disruptions from frequent medical appointments. Studies recommend that even after remission, children should be examined every 8–12 weeks to prevent flares [5]. Caregivers bear out-of-pocket costs for medications and equipment [13], and many must travel to specialized eye hospitals in major cities, incurring additional transportation and accommodation expenses. Moreover, the systemic side effects of therapies, such as retarded growth and development, can extend disease burden over a lifetime [5]. Other challenges include psychological adjustment, insufficient disease knowledge, medication adherence, and family interactions [14, 15]. Such a heavy burden can indirectly affect the quality of care provided by caregivers, which is detrimental to the treatment and recovery of the children [16, 17]. Therefore, in the overall management of NIU in children, it is crucial to explore the specific burdens faced by caregivers to help them better cope with their child’s disease and improve adherence to treatment and follow-up. Our previous study, using a quantitative design with standardized measurements, demonstrated that the caregiving burden for caregivers of children with NIU is moderate. However, this research design may neglect the intricacies of personal experiences and the significance of context. Consequently, further qualitative research is warranted. We will use in-depth interviews to explore caregivers’ specific experiences from a socio-ecological system perspective, broadening the scope and content of the research.
Zastrow’s Social Ecosystem Theory emphasizes the interaction between individual’s psychological experiences and the surrounding environment, forming a complete ecosystem that includes micro, mezzo, and macro systems [18, 19]. The micro system comprises biological, psychological, and social subsystems that influence individual behavior. The mezzo system consists of small-scale groups that influence the individual system, such as family, work groups, and other social groups. The macro system encompasses larger systems and groups, including organizations, institutions, society, and social culture. Based on this theory, the study analyzes interview results by progressing from personal and intimate realms to broader perspectives. This approach explores how caregivers interact with others and their environment (e.g., family, friends, schools, health systems), and how these interactions affect their caregiving experiences and burdens. Focusing on these interactions provides a nuanced understanding of the multifaceted burdens experienced by caregivers of children with NIU.
Methods
Aim
This study was part of a larger research project aimed at developing a family-centered intervention program for caregivers of children with NIU and explore its impact through a quasi-experimental design.
Design
This study employed a qualitative research design with the descriptive phenomenology approach. Descriptive phenomenology emphasizes “returning to the thing itself” and focuses on the life experiences of participants, helping to explore their experiences and feelings [20]. When preparing the manuscript, the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was followed [21].
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Setting and participants
From September 2023 to February 2024, caregivers of children with NIU were recruited from a tertiary eye hospital in Wenzhou, Zhejiang, China. Purposive sampling combined with a maximum variation sampling approach was utilized to ensure maximum diversity in social and demographic status, as well as considering the various disease characteristics of children with NIU [22]. The inclusion criteria were: (a) caregivers of children under 16 years of age diagnosed with NIU, (b) caregivers who had participated in disease care for at least 3 months, and (c) caregivers who voluntarily performed the main care tasks free of charge. The exclusion criteria were: (a) caregivers with cognitive or communication barriers, (b) caregivers of children with a critical illness, a poor prognosis, or another systemic chronic disease, and (c) caregivers who participated in caring for other children with illnesses. The number of participants was determined by the principle of data saturation [23, 24], whereby the lead researcher, in consultation with peer researchers, determined that no new themes or ideas emerged after two consecutive interviews, resulting in the enrollment of 11 caregivers.
Data collection
A semi-structured interview guide (Table 1) was used to collect information through face-to-face interviews. The interview guide was developed by the project team based on the Social Ecological Theory, literature review and research objectives. The final interview guide was revised after consulting with qualitative nursing experts and uveitis specialists, as well as conducting pre-interviews with three caregivers to adapt the language and refine the guide. All interviews were conducted by a postgraduate student trained in qualitative research. A research assistant played an auxiliary role, including recording non-verbal responses such as the interviewee’s tone, expressions, and body language.
Table 1
Semi-structured interview guide
No. | Questions |
|---|---|
1 | How did you view the disease of noninfectious uveitis in children? |
2 | How did you feel during the different stages of caring for your child? |
3 | What changes occurred in your life after your child became ill? |
4 | What changes occurred in the life of your other family members after your child became ill? (Tips: partner, other children) |
5 | What difficulties were encountered during the care of the child and how did you solve them? |
6 | What help have you received? What help would you like to receive? |
7 | What are your expectations for the child’s treatment, recovery and future? |
The well-trained researcher screened eligible participants by reviewing medical records or interviewing nurses in the outpatient clinic. With informed consent from the participants, the entire interview audio was recorded using the Xunfei software. The researcher began the interview by providing background information, then proceeded with the interview guide. The interviews were conducted in a quiet and private consulting room, either during the participants’ waiting period in the outpatient clinic or after their appointment, to ensure an uninterrupted and comfortable environment conducive to open discussion. Each participant was interviewed once, and each interview lasted approximately 20–50 min (with an average of 33 min).
Ethical consideration
Ethical approval for this study was granted by the ethics committee of the Eye Hospital, Wenzhou Medical University (No. 2023-082-K-69-06). Informed consent was obtained from all participants before the study commenced. Participants were assured of their privacy, as interviews were presented anonymously with names replaced by letters.
Data analysis
The recordings were transcribed verbatim within 24 h after the interviews. Two researchers independently analysed and coded the original data using Colaizzi’s seven-step method (Table 2) [25]. In case of disagreements, the group discussed and reached a consensus. The data were analysed using NVivo 14.0 for Mac. Ultimately, major themes and subthemes related to participants’ experiences of burden and needs were identified within the framework of the Social Ecosystem Theory (Fig. 1).
Table 2
Colaizzi’s seven-step process for qualitative data analysis
No. | Data analysis step |
|---|---|
1 | Each verbatim transcript was carefully read several times. |
2 | Researchers extracted and labelled meaningful statements directly related to participants’ experiences of burden and needs. |
3 | Coded meaningful statements preliminarily. |
4 | Identified and organized the meaning units into theme clusters. |
5 | Merged the formed themes with the research content and exhaustively described them in detail. |
6 | Recognized similar subthemes, identified the basic structure, and obtained the major themes. |
7 | Returned the themes to the interviewees for confirmation. |
Fig. 1
Thematic map of themes and subthemes
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Rigour
The study’s rigor was established through meticulous attention to credibility, transferability, dependability, and confirmability [26, 27]. Credibility was ensured through the interviewer’s systematic training in qualitative research methods, practical experience in an eye hospital, and the establishment of strong rapport with participants before commencing the interviews. A pilot test of the interview guide was conducted to ensure it aligned with the study’s objectives. Transferability was ensured by providing a comprehensive description of the study setting, participant inclusion and exclusion criteria, and sociodemographic characteristics. The collection, analysis, and interpretation of data were continually reviewed and detailed to ensure dependability. The data were independently analyzed by two researchers, and findings were discussed within the research team until consensus was reached. Additionally, two participants reviewed and commented on interpretive notes to achieve confirmability.
Results
Participant’s characteristics
A total of 11 caregivers participated in the study, including 3 males and 8 females. The average age of caregivers was 39.82 ± 3.66 years, with a range of 35–47 years; the average age of the children was 10.18 ± 2.41 years, with a range of 7–15 years. The duration of uveitis in children ranged from 10 to 75 months. The sociodemographic information and disease characteristics of the children and their caregivers are shown in Additional file 1, with participants’ identities protected by using identifiers N1 to N11.
Main findings
Based on the Society Ecosystems Theory and Colaizzi’s seven-step method, caregivers’ experiences during care for their children with NIU are summarized in three themes and eleven subthemes (Table 3). Problems are particularly complex within the micro system, including caregivers’ physical exhaustion, heavy caretaking responsibilities, and the coexistence of negative emotions and positive experiences. The main issues within the mezzo and macro system arise from family dynamics, economic burdens, medical resource limitations, and inadequate social support.
Table 3
Themes, subthemes, and meaning units categorized from the interviews
Themes | Subthemes | Meaning units | Number (%) |
|---|---|---|---|
Micro system: Caregiver distress and growth coexist | • Affected physical health | Sleep problems | 4(36%) |
Physical health problems | 6(55%) | ||
• Difficulties in the child’s health management | Medical appointment | 10(91%) | |
Medication administration | 8(73%) | ||
• Emotional well-being | Psychological gap | 4(36%) | |
Anxiety | 11(100%) | ||
Self-blame | 4(36%) | ||
Helpless | 8(73%) | ||
Stress | 5(45%) | ||
• Psychological adjustment and growth | Positive experiences | 4(36%) | |
Mezzo system: Changes in family lifestyle | • Family financial challenges | Heavy economic burden | 10(91%) |
•Family management dilemmas | Relationship conflict | 7(64%) | |
Role conflict | 2(18%) | ||
Changing priorities over time | 9(82%) | ||
• Weakened family socialization | Changes in career | 8(73%) | |
Giving up social life | 6(55%) | ||
Insufficient socialization of children | 7(64%) | ||
Macro system: Weak support system | • Insufficient information support | Ignorance of disease | 5(45%) |
Limited sources of knowledge | 6(55%) | ||
Lack of professional guidance | 10(91%) | ||
• Limited medical support conditions | Misdiagnosis | 5(45%) | |
Dissatisfaction with medical counseling service | 3(27%) | ||
• Lack of social understanding and support | Kith and kin | 7(64%) | |
Teachers and classmates | 3(27%) | ||
Lack of healthcare services | 6(55%) |
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Theme 1: micro system — caregiver distress and growth coexist
Affected physical health
Children with NIU undergo extended treatment cycles, placing significant physical demands on their caregivers. These challenges result in prolonged states of tension and stress that adversely affect the caregivers’ sleep quality (n = 4, 36%) and overall physical health (n = 6, 55%).
“My sleep is affected. I spend whole nights thinking about many things.” (N2) “I was diagnosed with breast nodules this year…My child’s situation has weighed on my mind for three years. (sigh)” (N11).
Difficulties in the child’s health management
Caregivers noted that managing ongoing healthcare needs imposed a significant burden on them, especially for their children’s medical appointments (n = 10, 91%) and medication administration (n = 8, 73%). The uneven distribution of medical resources in China results in limited hospitals available for effective treatment of uveitis, primarily concentrated in developed cities. Caregivers often travel long distances to multiple hospitals and departments for appointments, which complicates access to medical care.
“We’re from out of town, and it’s tough to come back for check-ups every two weeks.” (N1) “We’re checking joint issues at children’s hospital in Shanghai and seeing about the eyes in Ningbo and Wenzhou.” (N7).
The complex topical and systemic immunosuppressive treatment regimens have increased the burdens of disease management for caregivers. Caregivers emphasized the direct effects of pharmacotherapeutic interventions, which included multiple eye drops with varying schedules, pain from subcutaneous injections, nausea, and difficulty swallowing pills.
“Methotrexate makes him nauseous…just seeing folic acid makes him feel sick… it’s pretty tough for me to give him the injection (adalimumab)…he’s really resistant to it…. sometimes I have to go to his school gate to give him eye drops… it’s exhausting.” (N4).
Emotional well-being
Due to their limited knowledge of pediatric uveitis, caregivers initially believed their child was merely suffering from a common eye disease. However, upon realizing the complexity of the disease and its treatment, four (36%) caregivers experienced a significant psychological gap.
“At first, it didn’t feel like much… then we found out it’s a hard-to-treat chronic illness, and we get fazed.” (N3).
All participants in this study reported experiencing anxiety, commonly associated with the frequent recurrence, medication side effects, and vision-threatening complications of pediatric uveitis. These conditions suggest that caregivers must frequently take their children to the hospital for treatment.
“He keeps relapsing, and soon after it gets better, more KPs appear…which makes me anxious.” (N4) “Having problems with one eye can lead to many complications… I’m worried and scared.” (N8) “I’m really worried about the side effects of steroids. My child’s height and secondary sexual characteristics haven’t matured yet…” (N10).
During prolonged medical treatment, family management, and uncertainty, four caregivers (36%) felt self-blame, attributing their child’s disease to their own negligence or actions. Eight caregivers (73%) indicated a loss of confidence and feelings of helplessness. Five caregivers (45%) expressed sensitivity to feelings of sadness and even depression, stating that they were unable to cope with the stress.
“I messed up when I was pregnant, so he’s suffering because of me.” she sobbed. (N3) “I feel lost and helpless because I don’t know how long this will last… I can’t change an autoimmune disease.” (N10) “…Honestly, the stress really makes me tremble.” (N6).
Psychological adjustment and growth
As treatment progresses, caregivers experienced a transformation in their emotions. Four caregivers (36%) gradually accepted the reality of their child’s disease and effectively engaged in the treatment process. They concurrently reflected on themselves, explored their inner feelings, and strengthened their confidence in overcoming adversity. This finding is consistent with the post-traumatic growth theory [28].
“My mindset has slowly become more optimistic. Honestly, the kid can only rely on me… As long as he can be cured, I can accept anything.” (N8).
Theme 2: mezzo system — changes in family lifestyle
Family financial challenges
Following the child’s systematic treatment, the economic burdens on the caregiver’s family increased due to medical expenses. Ten caregivers (91%) reported that they could no longer afford the costs of treatment. Additionally, unpredictable expenses further exacerbated this financial burden.
“Besides the necessary treatment costs, there are many extra expenses, like adalimumab, glasses, supplements and sports… For us from out of town, there are also transportation and accommodation costs. " (N2)” I hired a tutor while my daughter had trouble seeing the board.” (N1).
Family management dilemmas
The demands of caregiving tasks led to changes in the family atmosphere. Seven caregivers (64%) reported experiencing both direct and extended conflicts within their familial relationships, particularly regarding children’s appointments, medication management, and financial concerns related to the costs of uveitis treatment.
“Sometimes I get impatient and criticize her for not taking her medicine as we asked… It also affects the conjugal relationship… I just can’t comfort another person anymore.” (N11).
We found that even when shared roles were initially reported, caregiving responsibilities remained primarily shouldered by mothers. Mothers often gave up work and social activities to devote more time to caregiving tasks. Two mothers (18%) expressed dissatisfaction with their role changes.
“I really want to be the one making the money and let my husband take care my son. That way, he’ll understand that caring a kid isn’t easy.” (N2).
After the child was diagnosed, the family’s priority shifted to caring for the affected child. Nine caregivers (82%) believed that other family responsibilities, as well as the child’s education and interests, were no longer as important.
“We gave up her piano practice time; her health comes first… this changed our whole family’s direction.” (N10).
Weakened family socialization
The medical visits and treatments required for the children demand considerable attention, time, and energy from caregivers, disrupting their work and social activities. Eight caregivers (73%) adjusted or abandoned their jobs. Six caregivers (55%) reported difficulties in maintaining their previous social lives, resulting in social isolation.
“There’s been a change in my job, so it’s easier to take leave.” (N5) “I focus all my energy on the kids; it’s either work or home for me, and I don’t go out to any gatherings anymore.” (N7).
The interviews revealed that seven children (64%) also experienced insufficient socialization. Caregivers may restrict or impede their children’s social activities due to weakened immune systems and visual limitations, potentially impacting their social development and well-being.
“The school environment makes her prone to relapses… so if colds and fevers trigger it, we’d rather keep her at home.” She shook her head (N11) “If use the dilating drops, his vision will be blurry and he’ll be sensitive to light, so he can’t participate in PE class. " (N5).
Theme 3: macro system — weak support system
Insufficient information support
Due to limited knowledge of the disease, five caregivers (45%) failed to notice signs and clues of children’s vision problems, often minimizing the situation and its repercussions for the children.
“She always looked at everything sideways, and we thought she had strabismus… until we noticed her eyes were red. We thought it was just pink eye, so we didn’t pay much attention.” (N6).
Pediatric uveitis has a low incidence, and there are few related reports. Existing information about uveitis does not meet the needs of caregivers. Six caregivers (55%) pointed out limited access to disease knowledge and expressed an urgent need for professional guidance from healthcare providers. Furthermore, ten caregivers (91%) expressed a desire to establish social connections with others who share similar caregiving experiences, hoping to learn from their successful practices.
“I stopped letting him take the steroids after I found online that they can have serious side effects… I hope the doctor can suggest some counseling options.” (N9) “I joined a uveitis group on WeChat… it helps us to refer to others’ advice.” (N3).
Limited medical support conditions
Due to limitations in medical care, many primary healthcare providers lack the expertise to recognize and diagnose uveitis. Five caregivers (45%) observed that when clinicians were not sufficiently alert to the symptoms, diagnosis was delayed or incorrect, increasing their uncertainty and concern.
“Our local doctor couldn’t diagnose uveitis at first, so he treated it as iridocyclitis for about four years… which caused serious issues later on.” (N1).
Additionally, three caregivers (27%) noted that healthcare providers commonly exhibited indifference and a lack of empathy during medical visits. They expressed a need for emotional support from healthcare providers.
“Some clinicians have too many patients in a day, so it’s really hard to communicate with them… if I want to ask a few extra questions, the clinician gets annoyed.” (N8).
Lack of social understanding and support
The interviews also revealed that owing to the traditional socio-cultural context in China, most caregivers (n = 7, 64%) were reluctant to share their child’s condition with elders, relatives, and friends. Furthermore, they did not actively seek, or may even decline, support from others, making it challenging for them to safeguard the well-being of the child by expressing their emotional distress.
“We only share good news with our elders. We can’t share the bad stuff with friends, and we don’t want to burden others with negative emotions.” (N10).
Regarding the school environment, three caregivers (27%) noted a lack of understanding from both teachers and classmates. Adapting the classroom layout and activities according to the child’s limitations mainly depended on the goodwill of each teacher. In the absence of this goodwill, it could overburden both children and caregivers, inside and outside the classroom. It was observed that some children experienced discrimination and isolation from their classmates, with caregivers expressing concern that their children may develop psychological issues.
“After using dilation drops, my child can’t see clearly, but his teacher can’t understand his situation… All the homework assigned is completed with my help.” (N2) “Sometimes she has to wear sunglasses or reading glasses, and her classmates think she’s weird, which leads to discrimination and isolation. (Sighs after a pause) … This affects her mindset and she can’t study normally.” (N11).
In China, the costs of outpatient medications and equipment for pediatric uveitis are beyond the scope of urban medical insurance and the new rural cooperative medical system, prompting caregivers to seek social support (n = 6, 55%).
“I’ve been hoping that this disease will be classified as a special condition. The government should create policies for uveitis… like insurance or charity funds.”
Discussion
The management of pediatric uveitis is both complex and prolonged, presenting numerous challenges and burdens for caregivers. Our interview results reveal various issues within the social-ecological systems of caregivers of children with NIU. These systems interact with each other, collectively influence the caregiving experiences.
Pay attention to caregivers’ dynamic emotions and provide timely information and emotional support
We found that the psychological experiences of caregivers with pediatric NIU are dynamic, similar to the findings on caregivers of children with visual impairment (VI) [29]. Caregivers often experience significant shock when learning about their child’s diagnosis due to a lack of mental preparation. The side effects of medications, disease relapses, and complications frequently lead to anxiety, followed by negative emotions such as helplessness, self-blame, and stress. Many caregivers struggle to regulate their emotions, as most of their time and energy are consumed by the child’s numerous health management tasks. However, with time and support, 36% of caregivers in this study enhanced their psychological resilience and adapted to the challenges. Research indicates that this adaptation requires active coping strategies and appropriate support [30, 31]. Therefore, healthcare providers should regularly assess the psychological state of caregivers and offer professional guidance and support when necessary. For instance, they can alleviate caregivers’ negative emotions by providing detailed information about their child’s treatment and offering guidance on psychological adjustment strategies.
Alleviating feelings of social isolation by establishing support networks
According to the Social Ecosystem Theory, an individual’s physiological and psychological behaviors continuously and dynamically interact with other systems [18]. At the mezzo system level, uveitis brought changes to caregivers’ family lifestyle, namely, partner-relationship, work, and social life. At the macro system level, the lack of social understanding and diverse support often leaves caregivers feeling alone and isolated. This sense of social isolation is also common among caregivers of children with other chronic and rare diseases [32‐34]. Studies have shown that positive experiences of social support can build resilience to stress and lower caregiver burden [35]. Healthcare providers should help caregivers identify potential sources of support (e.g., partners, relatives, and friends) [36]. However, in China, most caregivers hesitated to disclose their child’s condition to relatives and friends due to sociocultural factors. To address this, collaboration with mental health institutions or charitable organizations could offer psychological counseling or additional support. Additionally, online support groups, such as WeChat groups, can facilitate regular disease-related discussions among caregivers with similar experiences, offering opportunities for social support, a sense of shared experience, and the ability to help others [37].
Financial burden on caregivers and proposed support strategies
Most participants reported experiencing serious financial difficulties, which then severely impacted their experiences of burden. Similar difficulties are reported in other diseases; for example, the lack of medical insurance coverage for medications and equipment was identified as a cause of financial strain for parents of children with retinoblastoma in China [38]. Hospital administrators should consider establishing a tripartite support system linking hospitals, families, and communities to alleviate some of this financial strain. This could include advocating to government agencies for increased attention to pediatric uveitis, proposing the creation of special funds, and expanding the scope of reimbursable medications and eligible groups. Such initiatives would allow families to fully benefit from available social support and guarantee.
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Providing professional guidance through diverse forms of disease education and information support
In this study, most caregivers reported insufficient support for disease-related information, which adversely affected their treatment adherence. They primarily rely on the internet for information, but unfiltered online information regarding uveitis often lacks accountability and is not written at an appropriate level for average patients and caregivers [39]. Caregivers expressed a preference for more detailed communication and explicit support from doctors regarding treatment and potential outcomes, a finding consistent with study on informal caregivers of patients with VI [40]. Research suggests that incorporating detailed and frequent disease education may increase family uveitis knowledge, thereby improving early detection and visual outcomes [41]. Therefore, healthcare providers should utilize “internet hospitals” to offer online consultations and information services. Uveitis specialty nurses could implement “online nursing services” to enhance the dissemination and promotion of knowledge about the disease, medications, and ophthalmic examinations through video, audio, and text formats. This approach would assist caregivers in managing the disease and its treatment, ensuring that children receive scientific, continuous, and comprehensive care.
Enhancing pediatric uveitis management through collaborative care models
Primary care ophthalmologists in China often lack the necessary skills to recognize and diagnose pediatric uveitis. Vision-threatening complications frequently occur due to delayed diagnosis and persistent chronic inflammation, often resulting from suboptimal therapeutic regimens [42]. Therefore, enhancing management systems for pediatric uveitis in primary ophthalmic hospitals is crucial. Holistic management of a child with uveitis requires the expertise of a multidisciplinary team, which can provide comprehensive support to affected families [1]. Healthcare providers should consider establishing a family-centered Collaborative Care Model (CCM). Substantial evidence indicates that CCMs are effective in reducing medical errors and improving patient outcomes [43]. Future research could involve forming collaborative care teams to develop and test standardized patient education interventions in conjunction with caregivers. Team members may include ophthalmologists, pediatric rheumatologists, pediatric uveitis nurse specialists, pharmacists, and psychologists. By implementing systematic management, children with uveitis can be diagnosed early and receive appropriate treatment, thereby reducing the burdens on caregivers and their families.
Limitations
This study has several limitations. First, the study lacks representation from caregivers of single-parent families, potentially limiting the comprehensiveness of insights into diverse caregiving experiences. Second, the study only included interviews with caregivers; future research should incorporate the perspectives of healthcare professionals and patients to gain a deeper understanding of the experiences and needs of families managing uveitis. Lastly, participants were asked to recall and describe their experiences at various caregiving stages, which may introduce recall bias. Supplementing these results with studies involving individuals at different caregiving stages could provide higher-quality and more comprehensive evidence for developing related interventions.
Conclusion
This study, based on the Social Ecosystem Theory, explores the diverse burden experiences and needs of caregivers of children with NIU across three system levels. To address these complex issues, healthcare providers, administrators, and policymakers can take proactive steps to create supportive environments that assist affected children and their families in coping with the disease, thereby alleviating the burdens experienced by caregivers at various system levels. This approach, in turn, contributes to improved patient care and outcomes. Consequently, our research provides a reference for implementing family-centered disease management and interventions in clinical practice.
Acknowledgements
The authors extend their sincere thanks to the research participants and the experts who helped them in the design of the interview outline.
Declarations
Ethics approval and consent to participate
The study followed the tenets of the Declaration of Helsinki. Institutional Review Board approval (No. 2023-082-K-69-06) was obtained from the Eye Hospital, Wenzhou Medical University, Wenzhou, China. Informed consent was provided and obtained from all participants before the study commenced.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
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