Introduction
Nephrotic syndrome (NS) is one of the most common glomerular disorders in childhood and is characterized by heavy proteinuria, hypoalbuminemia, and edema.1 Although most affected children achieve remission following initial glucocorticoid therapy, management commonly requires prolonged treatment, clinical monitoring, and sustained family involvement across hospital and home settings. The disease course is frequently relapsing. A meta-analysis of 73 studies estimated an overall relapse risk of approximately 72% among children with idiopathic NS,2 while international clinical practice recommendations indicate that approximately 85–90% of children initially achieve complete remission with glucocorticoids, but 70–80% of those with steroid-sensitive nephrotic syndrome (SSNS) subsequently experience at least one relapse and up to half may develop frequent relapses or steroid dependence.3 Recurrent disease may therefore expose children and families to repeated cycles of remission, relapse, glucocorticoid treatment, clinical monitoring, and, in selected cases, steroid-sparing immunosuppressive therapy.1,3 The KDIGO 2025 guideline further emphasizes individualized management according to glucocorticoid response, relapse pattern, treatment toxicity, adherence, patient preferences, and available resources.4 These characteristics make childhood NS a continuing family-management challenge rather than an isolated episode of acute care.
For families, management extends well beyond medication administration. Caregivers monitor edema and urinary protein, implement medication and dietary regimens, prevent infection, attend follow-up visits, and decide when clinical changes require professional attention. These demands can affect both children and caregivers physically and psychologically.
Caregivers must gradually acquire knowledge about diagnosis, treatment, monitoring, and relapse, while difficulties obtaining accurate and individualized information may complicate this process.5 Previous studies have also demonstrated adverse effects on family functioning and coping, close associations between caregiver and child quality of life, and practical, emotional, and parenting difficulties from the early stages of the disease.6,7 Psychological problems in affected children have also been associated with greater parental stress and poorer parental well-being.8,9 In a large prospective cohort of 733 children with NS, more than one-third of caregivers experienced at least mild psychological distress, with distress related to treatment, family functioning, socioeconomic circumstances, and child quality of life.10 Qualitative research in mainland China has also identified emotional strain, physical and financial burden, loss of normal family life, and inadequate social support among parental caregivers.11 Difficulties may become especially visible at discharge. A multicenter study of 350 parents found low perceived social support and discharge readiness together with high parenting stress, suggesting that the transfer of disease-management responsibility from hospital to home is a vulnerable point in care.12 Collectively, these findings indicate that childhood NS affects not only disease management but also children’s and caregivers’ physical, psychological, social, and family functioning, while requiring families to integrate complex care demands into everyday life.
Existing qualitative studies have clarified several parts of the childhood NS experience. Okpere et al described the diagnostic journey as involving unexpected symptoms, difficulty obtaining a diagnosis, repeated healthcare encounters, symptom misinterpretation, and substantial emotional and informational needs.13 Their subsequent work identified challenges related to glucocorticoid treatment, relapse, second-line therapies, treatment participation, and social support.14 Similarly, qualitative research involving caregivers of children with difficult-to-treat NS has highlighted inadequate disease knowledge, psychological pressure, concerns about adverse effects and infection, and uncertainty during treatment decision-making.15 Together with evidence on caregiver burden and discharge readiness, these studies provide important insights into specific components of the childhood NS experience, including diagnosis, treatment, relapse, caregiver burden, and transition from hospital to home. However, these components have largely been examined separately rather than as parts of a continuous care trajectory.
Less is known about how caregiving tasks, emotional responses, barriers, and support needs evolve and interact across the entire care continuum, from symptom recognition and diagnosis through inpatient treatment, transition to home, and long-term management, or how recurrent relapse reshapes this trajectory over time. The present study addresses this gap by integrating caregivers’ experiences across these stages within a single caregiver-informed journey map.
Patient journey mapping offers a useful framework for addressing this gap by organizing patient or family experiences and healthcare interactions along a temporal pathway, allowing stages, touchpoints, activities, emotions, barriers, and opportunities for improvement to be considered together. Davies et al reviewed 81 studies and showed that journey mapping has increasingly been used to understand how individuals enter, experience, and move through healthcare services and to identify gaps that may inform more patient-centered care.16 Subsequent methodological work has emphasized the value of visual and narrative maps for representing transitions through health services,17 while another scoping review has highlighted the potential integration of journey mapping within learning health systems.18 Most recently, a review focusing specifically on care transitions found that journey maps can integrate stages, touchpoints, emotional trajectories, and system-level barriers across in-hospital, inter-hospital, and community transitions.19 This approach is particularly relevant to childhood NS, where responsibility for day-to-day management progressively shifts from professionals to families and the trajectory may be repeatedly disrupted by infection or relapse. Therefore, this study aimed to map the caregiver-informed care journey of children with NS from symptom recognition and diagnosis through inpatient treatment, transition to home, and long-term management.
Specifically, we sought to characterize changes in caregiving tasks and emotional experiences, identify stage-specific barriers and support needs, and examine how relapse reshapes family experiences over time. By integrating these experiences within a visual journey map, we aimed to identify opportunities for more continuous, family-centered, and stage-responsive support.
Methods
Study Design
This study used a descriptive qualitative design incorporating caregiver-informed journey mapping. Journey mapping organizes and visually represents experiences, interactions, emotional responses, difficulties, and support needs across a temporal care pathway. In this study, it was used to examine how caregiving tasks, emotional experiences, barriers, and support needs evolved across healthcare and home-management touchpoints.
An initial journey framework was constructed based on the routine care pathway for childhood nephrotic syndrome at the study site and the research team’s observations of routine care processes. The framework encompassed symptom recognition and healthcare seeking, diagnostic assessment and confirmation, inpatient treatment, discharge preparation and transition to home, long-term home management and follow-up, and reassessment following infection or relapse. This initial temporal framework was subsequently refined using interview data on caregivers’ experiences, needs, and perceived barriers, and the resulting journey map was further reviewed through caregiver member checking.
Setting and Participants
Participants were recruited from the Pediatric Rheumatology, Immunology and Allergy and Pediatric Nephrology Nursing Platform at the First Hospital of Jilin University, China, between August and October 2025. Purposive sampling with maximum variation was used to capture heterogeneity in caregiver and child-related clinical characteristics, including caregiver relationship to the child, educational background, residential setting, disease duration, relapse history, steroid response, and stage of care at the time of interview.
Caregivers were eligible if: (1) the child met the diagnostic criteria for NS; (2) the child was younger than 18 years; and (3) the participant was a direct family member involved in the child’s care. Caregivers were excluded if communication was substantially impaired because of hearing, visual, cognitive, or other difficulties that prevented effective participation in an interview.
Sampling continued until the research team considered that no new themes or perspectives were emerging from the interviews. Eighteen caregivers were ultimately included and assigned identification codes N1–N18. A total of 19 interviews were completed; 17 caregivers were interviewed once, and N10 participated in a second interview to clarify and complete information from the initial interview.
Development of the Interview Guide
The semi-structured interview guide was developed based on previous research, a review of the relevant literature, and discussion within the research team. Two caregivers participated in pilot interviews to assess the clarity, sequencing, and comprehensibility of the questions. Minor revisions were made to the wording and order of several questions to facilitate more natural and in-depth discussion; no substantive changes were made to the interview domains.
Because the pilot interviews were conducted using the same eligibility criteria and no substantive changes were made to the guide, data from these two participants were included in the final analysis.
The final guide explored seven broad areas: (1) recognition of the child’s initial symptoms and the pathway to healthcare seeking and diagnosis; (2) effects of NS symptoms on eating, sleeping, physical activity, and emotions; (3) experiences of glucocorticoid and other treatment-related adverse effects; (4) difficulties implementing dietary recommendations, including salt, protein, and fluid-related advice; (5) changes in the child’s mood, behaviour, sleep, and social participation; (6) sources of stress, anxiety, and concern experienced by caregivers; and (7) the forms of support that caregivers expected from healthcare professionals. Follow-up questions and probes were used flexibly to clarify experiences and elicit greater detail.
Data Collection
Interviews were conducted by a researcher who had received formal training in qualitative research and had previous interviewing experience. The researcher was involved in participants’ routine clinical care and had established rapport with the caregivers before the interviews. Before each interview, the researcher reviewed the child’s clinical background, explained the purpose and procedures of the study, and obtained written informed consent.
Interviews were conducted face-to-face in a quiet meeting room to protect privacy and minimize interruptions. With participants’ permission, interviews were audio-recorded. Participants were encouraged to describe their experiences in their own words, and the interviewer avoided leading or suggestive questioning.
Field notes were made during and immediately after the interviews to capture relevant non-verbal behaviours, such as facial expressions and emotional changes. Each interview lasted approximately 20–40 min. Participants were identified only by study codes (N1–N18), and identifying information was removed from interview materials.
Audio recordings and transcripts were used solely for the purposes of the study.
Data Analysis
Audio recordings were transcribed verbatim after each interview, and relevant information from field notes, including non-verbal expressions and emotional responses, was incorporated into the transcripts where appropriate. Two researchers independently reviewed the transcripts and conducted coding using NVivo software. Meaningful statements related to caregiving activities, emotional experiences, difficulties, healthcare interactions, and support needs were identified and assigned initial codes.
A framework-guided qualitative content analysis was then undertaken. First, the researchers repeatedly read the transcripts to become familiar with the data and independently generated initial codes. Second, conceptually similar codes were compared, grouped, and summarized into higher-order categories.
Third, these categories were examined in relation to the temporal care journey and mapped onto key stages and healthcare or home-management touchpoints. The initial journey framework was iteratively revised as new experiences and patterns emerged from the interviews. Differences in coding or interpretation between the two researchers were discussed, and unresolved discrepancies were addressed through discussion with the wider research team until consensus was reached.
The final analysis organized caregivers’ experiences across four interconnected phases: diagnosis and assessment, inpatient treatment, transition to home, and long-term management. Within and across these phases, the analysis focused on changes in key caregiving tasks, caregiver emotions, major pain points, and support needs or opportunities for care. Particular attention was paid to experiences that crossed stages, including uncertainty, transfer of disease-management responsibility, the tension between disease protection and normal childhood, and the recurrent effects of infection or relapse.
Construction and Refinement of the Caregiver-Informed Journey Map
The journey map was developed iteratively alongside qualitative analysis by positioning identified caregiving experiences within the temporal care pathway. The horizontal axis represented progression through the care journey, while the vertical dimensions represented key caregiving tasks, caregiver emotions, major pain points, and support needs or opportunities. The preliminary map was iteratively revised to reflect transitions and cross-stage patterns identified in the interview data.
The final map comprised four interconnected phases: diagnosis and assessment, inpatient treatment, transition to home, and long-term management. Although presented chronologically, a relapse loop was incorporated to show that infection or disease recurrence could return families to reassessment, intensified monitoring, and treatment adjustment.
Member checking was conducted in two rounds after development of the preliminary map. Four caregivers (N4, N5, N11, and N15) were purposively selected to provide diverse perspectives in terms of disease course, family structure, treatment response, socioeconomic background, and caregiver role. During the first round, caregivers reviewed the mapped care tasks, emotional trajectories, major pain points, and supporting quotations and were invited to identify inconsistencies, omissions, or misinterpretations.
Feedback was incorporated into the revised map, including greater emphasis on healthcare access barriers, peer-to-peer learning during hospitalization, and persistent helplessness in the context of refractory disease. During the second round, the revised map was returned to the four representatives for confirmation. The format of member checking was adapted when necessary to caregivers’ literacy needs, including simplified visual materials and verbal explanation.
Ethical Considerations
The study was conducted in accordance with the Declaration of Helsinki and was approved by the Ethics Committee of the First Hospital of Jilin University (2023-YK-1301-002). All participants received information regarding the purpose and procedures of the study and provided written informed consent before participation. The informed consent included consent for the publication of anonymized responses and direct quotations.
Participation was voluntary, and participants were informed that their data would be anonymized and treated confidentially. Identification codes were used in place of names in transcripts and reports.
Results
Participant Characteristics
Eighteen caregivers of children with nephrotic syndrome participated in the study. A total of 19 interviews were conducted: 17 caregivers were interviewed once, while one caregiver (N10) participated in a second interview to clarify and supplement information obtained during the initial interview. Interviews lasted approximately 20–40 min.
The caregivers ranged in age from 27 to 67 years, with a mean age of 37.6 years (SD 10.5). Eleven were mothers, five were fathers, and two were grandmothers; 16 identified themselves as the child’s primary caregiver. Educational backgrounds ranged from primary school to doctoral education, and participants represented urban, county-town, and rural settings.
The children ranged in age from 3 years 5 months to 10 years, with a mean age of approximately 6.1 years; nine were boys and nine were girls. Fourteen children were steroid-sensitive, three were steroid-dependent, and one was steroid-resistant. Eleven children had experienced at least one relapse, with the number of relapses ranging from one to four among those with recurrent disease.
The sample therefore captured a broad range of care experiences, including inpatient treatment, transition from hospital to home, long-term management, recurrent disease, steroid dependence, steroid resistance, and management of disease-related complications. Detailed caregiver and child characteristics are presented in Tables 1 and 2.Table 1Sociodemographic Characteristics of Participating Caregivers (n = 18)ParticipantRelationship to ChildAge (Years)SexEducationEmploymentResidencePrimary CaregiverN1Mother32FemaleBachelor’s degreeCompany employeeUrbanYesN2Mother34FemaleBachelor’s degreeSecurities managerUrbanYesN3Mother29FemaleAssociate degreeKindergarten teacherUrbanYesN4Mother33FemaleBachelor’s degreeBank employeeUrbanYesN5Paternal grandmother62FemalePrimary schoolFarmerRuralYesN6Father36MaleBachelor’s degreeMiddle-level corporate managerUrbanNoN7Father38MaleMaster’s degreeUniversity teacherUrbanNoN8Mother31FemaleBachelor’s degreeAdvertising copywriterUrbanYesN9Mother35FemaleAssociate degreeSupermarket salespersonCounty townYesN10Mother34FemaleMaster’s degreeCivil servantUrbanYesN11Father37MaleMaster’s degreePublic institution employeeUrbanYesN12Mother39FemaleBachelor’s degreeCommunity workerUrbanYesN13Father41MaleDoctoral degreeUniversity teacherUrbanYesN14Mother27FemaleHigh schoolNo stable employmentCounty townYesN15Mother30FemaleAssociate degreeSelf-employed (online shop owner)UrbanYesN16Maternal grandmother67FemalePrimary schoolFarmerRuralYesN17Father39MaleMaster’s degreeCorporate executiveUrbanYesN18Mother33FemaleAssociate degreeSelf-employed (ride-hailing driver)UrbanYesNotes: Participant codes correspond to the caregiver identifiers used throughout the qualitative analysis. Primary caregiver refers to the family member primarily responsible for the child’s day-to-day care.Table 2Clinical Characteristics and Care Stage of Children with Nephrotic Syndrome (n = 18)ParticipantChild AgeSexDiseaseDurationSteroid ResponseRelapses, nPrevious Hospitalizations, nCare Stage at InterviewN15 y 3 moMale1 ySteroid-sensitive12Long-term managementN27 y 5 moFemale1 y 5 moSteroid-dependent23Long-term managementN34 y 6 moMaleApprox.
3 moSteroid-sensitive01Inpatient treatmentN45 y 8 moFemale>1 ySteroid-sensitive01Long-term managementN53 y 5 moMale2 ySteroid-sensitive12Inpatient treatmentN64 y 7 moMale6 moSteroid-sensitive01Transition to homeN76 y 3 moFemale1 y 6 moSteroid-sensitive13Long-term managementN85 y 4 moFemale2 moSteroid-sensitive01Transition to homeN98 yMale1 y 6 moSteroid-sensitive12Long-term managementN107 y 2 moFemale1 y 6 moSteroid-sensitive01Long-term managementN114 y 8 moMale1 y 6 moSteroid-sensitive23Long-term managementN128 y 2 moFemale2 ySteroid-sensitive12Long-term managementN139 y 1 moMale1 ySteroid-dependent12Long-term managementN143 y 8 moFemale2 ySteroid-dependent46Inpatient treatment/transition to homeN1510 yMale1 ySteroid-resistant23Long-term managementN163 y 6 moFemaleApprox. 2 moSteroid-sensitive01Inpatient treatmentN176 y 2 moMale5 moSteroid-sensitive01Long-term managementN187 y 6 moFemale2 ySteroid-sensitive23Long-term managementNotes: mo, months; y, years. Steroid response was categorized according to the child’s documented clinical course.
The care stage refers to the predominant stage of the care journey at the time of interview; N14 was interviewed during a period spanning inpatient treatment and preparation for transition home.
Overview of the Caregiver-Informed Care Journey
Analysis of the interview data generated a caregiver-informed care journey comprising four interconnected phases: diagnosis and assessment, inpatient treatment, transition to home, and long-term management (Figure 1). Across these phases, caregivers described dynamic changes in caregiving tasks, emotional responses, perceived difficulties, and support needs.Figure 1Caregiver-informed care journey of children with nephrotic syndrome. The map summarizes key care tasks, caregiver emotions, major pain points, support needs or opportunities, and key care partners across four interconnected phases: diagnosis and assessment, inpatient treatment, transition to home, and long-term management.
Right-pointing arrows indicate progression through the care journey, whereas the relapse-loop arrow indicates that infection or relapse may return families to reassessment and intensified management.Map of nephrotic syndrome care for kids: phases, tasks, emotions, pain points, support, partners.The care journey map for children with nephrotic syndrome outlines four phases: diagnosis and assessment, inpatient treatment, transition to home and long-term management. Each phase includes key care tasks, caregiver emotions, major pain points and support needs or opportunities. Diagnosis and assessment involves symptom recognition, healthcare seeking, diagnostic confirmation and preparation for hospitalization.
Caregiver emotions include shock and anxiety, with pain points like difficulty recognizing symptoms and information overload. Support needs include early symptom education and reliable health information. Inpatient treatment focuses on acute management and treatment stabilization, with tasks like symptom management and infection prevention.
Emotions include hope and concern about steroid effects. Pain points involve steroid-related adverse effects, while support needs include practical medication training. Transition to home covers discharge preparation and early home adaptation, with tasks like medication planning and relapse warning recognition.
Emotions include relief and fear of mistakes. Pain points involve complex discharge instructions, with support needs like individualized planning. Long-term management involves routine follow-up and maintenance, with tasks like medication adherence and school reintegration.
Emotions include growing confidence and fear of relapse. Pain points include difficulty sustaining dietary restrictions, with support needs like long-term follow-up and psychological support. Key care partners include family caregivers, nurses, physicians, pharmacists, dietitians, community healthcare providers and schools.
A relapse loop indicates infection or relapse may return families to reassessment and intensified management.
During diagnosis and assessment, families attempted to recognize unfamiliar symptoms, navigate healthcare services, obtain a definitive diagnosis, and understand substantial amounts of new medical information. During inpatient treatment, caregivers gradually moved from relying predominantly on healthcare professionals to actively participating in symptom monitoring, medication administration, dietary management, infection prevention, and complication surveillance. The transition from hospital to home represented a particularly vulnerable point because responsibility for day-to-day disease management shifted more fully to the family.
During long-term management, many caregivers gradually established more stable routines and greater confidence, although dietary restrictions, social participation, treatment burden, and uncertainty regarding relapse remained persistent concerns.
The journey was neither uniform nor strictly linear. Infection or relapse could return families to intensified monitoring, medical reassessment, and treatment adjustment. Moreover, the intensity and nature of difficulties varied according to caregivers’ health literacy, access to specialist care, family caregiving capacity, financial and time resources, and the clinical complexity of the child’s condition.
Five interrelated patterns were evident across the journey: uncertainty changed in form rather than disappearing; responsibility for disease management progressively shifted from healthcare professionals to families; support needs varied according to families’ resources and caregiving capacity; efforts to protect the child from relapse frequently conflicted with preserving a normal childhood; and increasing experiential competence coexisted with persistent fear of recurrence.
Diagnosis and Assessment: From Symptom Ambiguity to a New Form of Uncertainty
The early phase of the journey was characterized by difficulty interpreting symptoms that initially appeared nonspecific. Periorbital or lower-extremity edema, fatigue, reduced activity, foamy urine, and decreased urine output were not always immediately recognized as manifestations of kidney disease. Some caregivers initially attributed these changes to sleeping position, hot weather, insect bites, or other temporary conditions.
Her eyes had been swollen for half a month. I thought she had been bitten by mosquitoes and even put toothpaste on them. Later her legs became swollen too.
The village clinic said it was nothing serious and gave her some anti-inflammatory medicine, so another ten days passed. (N16)
For some families, delayed recognition was compounded by difficulties in navigating the healthcare system. Caregivers described repeated consultations, referrals between different levels of hospitals, difficulty accessing specialist care, and inconsistent recognition of the condition in primary care. These barriers were particularly salient among rural families and those traveling from county-level areas.
The county hospital said they could not treat her, the city hospital thought it might be nephritis, and only after we were transferred again was she finally diagnosed. We went through two transfers, many blood tests, and several ultrasound examinations. I kept wondering why there could not be a more direct pathway to diagnosis.
(N14)
Receiving a definitive diagnosis resolved uncertainty about the immediate cause of the child’s symptoms but generated new concerns regarding treatment, relapse, prognosis, and future development. Many caregivers described difficulty absorbing information immediately after diagnosis because unfamiliar medical terminology and extensive management instructions were delivered at a time of considerable emotional distress. The doctor said it was nephrotic syndrome and that he would need steroids for a long time.
My mind went blank. They explained low-salt food, infection prevention, recording urine output, and weighing him every day, but I simply could not remember so much information at once. (N1)
Information needs also differed substantially according to caregivers’ prior knowledge and health literacy. Caregivers with limited formal education sometimes struggled with medical terminology, medication names, written instructions, and administrative procedures, whereas highly educated caregivers sought more detailed explanations of evidence, prognosis, treatment options, and risks. Simply increasing the amount of information therefore did not necessarily address individual needs.
The doctor talked about massive proteinuria and hypoalbuminemia, but I did not understand those words. I only remembered that he had to take steroids, that we could not stop them ourselves, and that his food had to be light. (N5)
Conversely, N13, who had a professional background in biology, reported understanding basic terminology but expressed frustration when more detailed questions regarding evidence and treatment decisions were not fully discussed. These contrasting accounts indicated that communication barriers could arise from either insufficient comprehensibility or insufficient depth.
Emotionally, diagnosis was commonly accompanied by shock, anxiety, guilt, and self-blame. Caregivers questioned whether they had contributed to the illness and worried about treatment response, growth and development, schooling, and long-term prognosis. Attempts to reduce uncertainty through online information seeking sometimes had the opposite effect, as caregivers encountered inconsistent or alarming descriptions of recurrence, long-term medication use, and kidney failure.
Overall, diagnostic confirmation marked the end of one form of uncertainty but the beginning of another. The findings highlighted needs for earlier recognition and referral, more accessible healthcare pathways, credible information, and communication tailored to caregivers’ health literacy and emotional readiness.
Inpatient Treatment: Intensive Caregiver Learning Amid Treatment-Related Uncertainty
Hospitalization represented a period of both clinical stabilization and intensive caregiver learning. During the acute phase, caregivers relied heavily on healthcare professionals to manage edema, fluid balance, infection risk, and disease-related complications. At the same time, they were increasingly expected to participate in monitoring urine output, body weight, urinary protein, dietary intake, medication administration, and other aspects of daily care.
The complexity of these tasks varied considerably according to disease severity. For caregivers of children with severe disease or complications, monitoring requirements could become particularly demanding. The nurse taught me to record every milliliter of fluid going in and coming out.
Everything had to be so precise. At one point I felt that I was no longer simply caring for my child, but operating a very complicated machine. (N14)
Caregivers of children requiring more complex treatment also had to learn additional medication precautions and complication-management strategies. N15, whose child was steroid-resistant and required second-line immunosuppressive treatment, described medication management as increasingly complicated, whereas N17 had to reconcile anticoagulation-related safety restrictions with the normal activity needs of a young child. These experiences demonstrated that the practical burden of learning to manage NS increased substantially when disease was refractory or complicated.
As edema subsided and proteinuria improved, visible treatment response brought considerable relief. However, improvement also shifted caregivers’ attention toward glucocorticoid-related adverse effects. Increased appetite, rapid weight gain, facial changes, behavioral changes, infection risk, and concerns about growth created a persistent ambivalence: caregivers recognized the necessity of treatment while simultaneously fearing its consequences.
When the swelling around his eyes went down and the urine protein decreased, I was so happy that I cried. But then his appetite became enormous. He was always hungry.
We knew we were supposed to control his weight, but watching a hungry child cry for food was completely different from simply being told to ‘control his weight. (N1)
This tension became particularly difficult when treatment-related changes affected children’s self-image or emotional well-being. Caregivers described distress associated with facial changes, weight gain, frequent procedures, restrictions on activities, and teasing by peers.
As the child’s condition stabilized, caregivers were also expected to acquire multiple skills required for management outside the hospital. Practical demonstrations, written medication schedules, repeated explanations, and dietary guidance were generally perceived as helpful. Informal learning between caregivers also emerged as an additional source of practical knowledge, with experienced families sharing everyday strategies for urine testing and disease management with families who were newly diagnosed.
This aspect was further emphasized during member checking.
Nevertheless, the same instructions imposed very different demands on different families. N5, an older rural caregiver with limited literacy, described difficulty completing written fluid-balance records, whereas other caregivers developed detailed monitoring systems.
The inpatient phase therefore functioned as a form of caregiver apprenticeship, but families differed substantially in their capacity to acquire and implement complex care skills. The experiences reflected the interaction between treatment complexity, health literacy, family resources, and available professional and peer support.
Transition to Home: Responsibility Transferred Faster Than Confidence
Discharge was generally perceived as evidence of clinical improvement, but the transition home also removed the immediate reassurance of continuous professional supervision. Caregivers described relief about leaving the hospital together with uncertainty about whether they could independently manage medication schedules, dietary restrictions, infection prevention, urine protein monitoring, and early signs of relapse. On the day we were discharged, I was happy but also very uneasy.
In the hospital, the doctors and nurses were watching everything. Once we got home, it was all up to us. For the first two weeks, I could hardly sleep.
I would get up during the night just to check whether she was swollen. (N8)
Caregivers therefore experienced a gap between knowing what should be done and being able to incorporate those requirements into everyday family life. Instructions that appeared manageable in the hospital could become difficult to implement alongside employment, household responsibilities, childcare, and other competing demands.
This difficulty was intensified when multiple family members participated in care. Differences in beliefs about nutrition, medication, monitoring, and acceptable levels of vigilance sometimes generated tension within the household. After we got home, I realized that the practical difficulties were greater than I had expected.
The grandparents helped with cooking, but they kept forgetting the low-salt requirement and thought that a sick child needed extra nourishment. I had to care for the child and also coordinate everyone else’s ideas. It was exhausting.
(N10)
Responsibility transfer was particularly difficult when caregiver capacity was already stretched by other family roles. N18, for example, described simultaneously caring for an infant and an older child experiencing NS relapse. Such experiences demonstrated that the same home-management expectations could impose substantially different burdens depending on family structure and available caregiving support.
The hospital-to-home transition therefore represented a particularly vulnerable point in the journey, characterized by a rapid transfer of responsibility that was not always accompanied by equivalent confidence in independent disease management.
Long-Term Management: Reconstructing Family Life While Protecting a Normal Childhood
Over time, many caregivers developed structured routines for medication administration, urine protein monitoring, weight measurement, dietary management, infection prevention, and follow-up. For families whose children achieved greater clinical stability, increasing familiarity with these tasks fostered a growing sense of competence and control. Some caregivers adapted formal recommendations to their own circumstances or developed individualized recording systems.
I created an Excel spreadsheet to record every urine protein result, body weight, infection episode, and steroid dose because I wanted to see whether there was a pattern to relapse. The doctor also thought the records were useful. (N13)
However, increasing confidence was not universal. For families dealing with frequent relapse, steroid dependence, steroid resistance, or other complex disease courses, long-term management could remain dominated by uncertainty and powerlessness rather than control. This heterogeneity was also highlighted during member checking, when the caregiver of a child with steroid-resistant disease emphasized that families facing refractory disease could experience persistent helplessness despite accumulating management experience.
Across families, long-term adaptation did not mean that the burden of illness disappeared. Instead, caregivers increasingly confronted the tension between minimizing disease-related risk and preserving a normal childhood.
Dietary restrictions were particularly difficult to sustain when children encountered foods eaten by classmates, friends, or relatives. Caregivers worried simultaneously about disease control and the psychological consequences of prolonged restriction. He watches other children eating crisps and sausages and just stares at them.
Once there was a birthday celebration at kindergarten and he secretly ate some cake. I immediately tested his urine protein when he came home. But if I keep restricting him for years, I also worry about what that will do to him psychologically.
(N1)
Infection prevention created a similar dilemma. Avoiding crowded places, public transportation, or group activities was perceived as reducing the risk of infection and relapse, but caregivers worried that excessive protection could lead to social withdrawal and developmental restriction.
School participation created additional challenges. Some caregivers reported that teachers or school administrators had limited understanding of NS, resulting in restrictions, stigma, or exclusion. Treatment-related changes in appearance could further expose children to teasing or bullying.
We finally managed to arrange for him to attend school, but he could not take part in physical education or group activities. He became the ‘special child.’ When he came home and asked, ‘Why am I different from everyone else?’, I did not know how to answer. (N9)
For some families, these difficulties became more pronounced when children experienced visible treatment effects, repeated hospitalization, or refractory disease. N15 described school refusal following treatment-related changes in appearance and peer bullying, illustrating that achieving medical stability did not necessarily restore psychological or social normality.
Long-term management also exposed substantial inequalities in caregiver burden. Families differed in financial resources, available caregiving support, health literacy, geographical access to specialist services, and time available for repeated healthcare visits. N14 described substantial out-of-pocket costs associated with repeated relapse and hospitalization, whereas N17, despite having greater financial resources, emphasized the cumulative time burden of appointments, waiting, and limited consultation time.
Burden was therefore shaped not by financial resources alone, but by the interaction between disease complexity, healthcare accessibility, family structure, and caregiving capacity.
Overall, long-term management involved more than maintaining treatment adherence. Families continually negotiated how to protect the child without allowing illness to dominate childhood, while absorbing substantial medical, emotional, social, financial, and organizational work.
Relapse as a Recurrent Loop: Persistent Uncertainty Alongside Experiential Competence
Relapse emerged as a critical event that disrupted the apparent linearity of the care journey. Even during periods of remission, caregivers remained vigilant for infection, edema, or changes in urinary protein, and seemingly minor symptoms could immediately reactivate concern about recurrence. Whenever she has even a slight runny nose, my heart immediately tightens.
That thought—’Is she going to relapse again?’—is always there. (N2)
Fear was particularly pronounced when caregivers associated relapse with steroid dependence, treatment escalation, repeated hospitalization, or increasing financial burden. For families experiencing frequent relapse or refractory disease, recurrence could undermine the sense that the illness was gradually becoming controllable.
At the same time, relapse could become a source of experiential learning. Caregivers who had previously managed recurrence described greater ability to recognize warning signs, contact healthcare professionals promptly, interpret changes in urinary protein, and respond to treatment adjustment. Last winter he relapsed after a cold and the urine protein went back to ‘++++’.
Because we had already been through it once, we did not panic. We contacted the doctor quickly and adjusted the steroid dose. Now I know that relapse itself is not the most frightening thing—the key is to recognize it early and deal with it promptly.
(N9)
A similar pattern was described by N11:The first time he relapsed, I completely broke down and thought he might never get better. Now we have been through two relapses and understand the pattern better. We know more about prevention and what to do when it happens.
I feel that the whole family has grown through this. (N11)
The meaning of relapse therefore changed with experience, but not uniformly across families. For some, accumulated experience reduced helplessness and strengthened practical competence; for others, particularly those facing repeated or refractory disease, recurrence continued to reinforce uncertainty and loss of control.
The cfare journey was consequently recurrent rather than strictly linear. Periods of stability could allow families to move toward greater confidence and normalization, whereas infection or relapse could return them to heightened surveillance, medical reassessment, and intensified treatment. Relapse therefore both reactivated uncertainty and, in some families, strengthened experiential competence, forming the recurrent loop represented in Figure 1.
Discussion
This study mapped the caregiver-informed care journey of children with NS across diagnosis and assessment, inpatient treatment, transition to home, and long-term management. The journey was neither uniform nor linear. Uncertainty changed in focus across stages, responsibility progressively shifted from professionals to families, and similar care requirements generated different burdens depending on family capacity.
Long-term management required caregivers to balance relapse prevention with the child’s need for ordinary childhood experiences, while relapse could both reactivate uncertainty and strengthen practical competence. These findings position childhood NS as a recurrent family-management process shaped by clinical demands, family resources, healthcare access, and developmental needs.
Uncertainty Evolves as Management Responsibility Shifts to Families
Uncertainty persisted throughout the journey, but its focus changed. Before diagnosis, caregivers struggled to interpret nonspecific symptoms and navigate healthcare services. After diagnosis, concerns shifted toward treatment response, adverse effects, relapse, prognosis, and the ability to manage NS independently.
Caregiver distress and burden have also been documented in pediatric NS, particularly during relapse and among families facing greater financial strain.20 Our findings further suggest that uncertainty was linked not only to the amount of information provided but also to the fit between information and caregiver capacity. Some caregivers struggled with medical terminology and written monitoring requirements, whereas others sought more detailed evidence about prognosis and treatment choices. Broader evidence on caregiver health-literacy interventions similarly suggests that communication should be tailored in format, intensity, and delivery rather than relying on one-time information provision.21
Hospitalization became an intensive learning period during which caregivers acquired skills in medication administration, dietary management, urine monitoring, infection prevention, and complication surveillance. However, discharge exposed a gap between receiving education and being ready to assume responsibility. Pediatric discharge research shows that parental readiness depends on understanding the child’s condition, post-discharge care, and return precautions rather than simply completing discharge teaching.22 Studies of hospital-to-home transitions also indicate that poorer discharge preparation and coping are associated with greater difficulties after discharge and higher healthcare use.23 Our finding that responsibility was transferred faster than confidence therefore identifies transition home as a critical handover of clinical work from professionals to families.
Learning during hospitalization was also social rather than exclusively professional. Caregivers described obtaining practical advice from more experienced parents, an observation reinforced during member checking. Peer-support literature in pediatrics similarly suggests that peer contact may support disease-related knowledge, coping, and self-management.24 Such support may be particularly valuable when newly diagnosed families are trying to translate technical instructions into workable daily routines, although it should complement rather than replace professional guidance.
The Same Care Demands Do Not Create the Same Burden: Family Capacity Matters
Care requirements that appeared standardized produced markedly different burdens across families. Previous NS research has shown that the disease can affect multiple domains of family functioning, with worry and emotional functioning among the most affected areas.25 Economic consequences are also substantial: caregivers may incur both direct out-of-pocket costs and considerable time costs related to disease management, including dietary preparation.26 More complex treatment can add further burden. In a recent multicenter survey of families considering or receiving rituximab for pediatric NS, treatment costs and safety concerns remained important barriers despite generally favorable perceptions of effectiveness.27
Our findings suggest that burden is better understood as a mismatch between healthcare demands and family capacity than as a simple count of prescribed tasks. Limited health literacy, rural access barriers, single parenting, competing caregiving roles, financial pressure, and time constraints could all reduce a family’s ability to absorb complex care. Conversely, caregivers with greater educational or material resources could still experience unmet needs when routine explanations did not match their expectations for participation in decision-making.
Broader pediatric evidence supports the importance of family context: greater spousal support and stronger parent–nurse partnership have been associated with lower caregiver burden,28 whereas intolerance of uncertainty, lower income, and repeated hospitalization may increase it.29
Caregiver generation may represent an additional dimension of family capacity. Two participants in this study were grandmothers, highlighting that responsibility for childhood NS management may extend beyond parents. Their experiences suggested that older caregivers may face particular difficulties when complex monitoring and treatment requirements intersect with limited health literacy, rural healthcare access, or reduced familiarity with medical information.
However, because only two grandparent caregivers were included and their grandchildren differed in disease course, the present data do not support a direct comparison of caregiving burden between older and younger caregivers or across levels of disease severity. Further research involving more grandparent caregivers is needed to examine these differences more directly.
This perspective helps explain why disease severity and caregiver burden may not move in parallel. A child with clinically stable NS may live in a family with limited caregiving capacity, while a family managing more complex treatment may have greater capacity because knowledge, responsibilities, and resources are shared. Family capacity should therefore be considered alongside disease complexity when identifying who may require additional support, particularly when treatment demands intensify or responsibility shifts rapidly to the home.
Protecting the Child Without Allowing Illness to Dominate Childhood
Long-term management revealed a persistent protection–normality tension. Caregivers tried to prevent infection, maintain dietary restrictions, ensure treatment adherence, monitor relapse, and reduce perceived risks. At the same time, these strategies could interfere with food choices, physical activity, school attendance, peer relationships, and social participation.
This tension is supported by NS-specific quality-of-life evidence. A recent review found that children with idiopathic NS generally have poorer quality of life than healthy peers, with school functioning among the most affected domains; recurrent relapse, longer disease duration, greater steroid exposure, and multiple medications were associated with poorer outcomes.30 Even at first onset, children with steroid-sensitive NS may show impairments in physical and emotional functioning, with steroid-related adverse effects contributing to poorer health-related quality of life.31 Similar reductions in quality of life have been reported in other settings, with edema, proteinuria, hospitalization, and disease duration among relevant clinical correlates.32 Family functioning also appears closely connected to child well-being in NS.33
Our findings extend this evidence by showing how measures intended to protect health may themselves reshape everyday childhood. A child may be in clinical remission yet remain socially restricted, worried about food, excluded from activities, or distressed by treatment-related changes in appearance. These experiences suggest that clinical stability does not necessarily equate to psychosocial normality.
Contemporary child-centered care emphasizes children’s participation, agency, communication, and developmental needs in healthcare, which is especially relevant as children with chronic conditions move between medical requirements and ordinary developmental tasks.34
The central issue should therefore not be reduced to caregiver “overprotection.” Families were balancing two legitimate goals: reducing perceived relapse risk and preserving age-appropriate participation. Successful long-term management should consequently consider school participation, peer relationships, autonomy, and emotional well-being alongside disease control, while helping families distinguish necessary precautions from restrictions that may unnecessarily narrow the child’s everyday life.
Relapse Reshapes the Journey: Competence Does Not Necessarily Mean Control
Relapse most clearly disrupted a linear model of recovery. Families could establish stable routines and then return to intensified surveillance, reassessment, and treatment adjustment when infection, proteinuria, or edema recurred. Experience helped some caregivers recognize warning signs, interpret home-monitoring results, and communicate with clinicians more efficiently, but it did not provide control over whether relapse would occur.
This distinction between competence and control is important. Longitudinal data from a large childhood NS cohort showed that medication non-adherence was reported by a substantial minority of participants but was not significantly associated with subsequent relapse, steroid-sparing treatment, or hospitalization.35 Recurrence therefore cannot be reduced to caregiver behavior alone. Treatment costs, safety concerns, and uncertainty may also persist even among families already familiar with complex NS management.27 More broadly, intolerance of uncertainty can remain an important contributor to caregiver burden despite growing experience.29
Relapse therefore had a dual effect. It could reactivate fear, financial pressure, treatment concerns, and helplessness while also strengthening preparedness in some families. This trajectory was not universal: frequent relapse or treatment resistance could repeatedly undermine confidence rather than consolidate it.
Supportive care should therefore help families function effectively despite uncertainty, rather than imply that greater knowledge or adherence can eliminate the biological unpredictability of NS.
Implications for Stage-Responsive, Capacity-Sensitive, Family-Centered Care
The findings support care that is both stage-responsive and capacity-sensitive. During diagnosis, information should be prioritized and adapted to caregiver health literacy and information preferences. During hospitalization, education should move beyond instruction toward demonstrated competence through approaches such as teach-back, return demonstration, simplified monitoring tools, and repeated opportunities to practice.
Before discharge, clinicians should assess whether caregivers can perform core tasks, recognize warning signs, and know when and how to seek help.22,23
After discharge, support should remain accessible rather than ending with written instructions. Digital self-management tools developed specifically for NS illustrate how symptom tracking, urine monitoring, medication records, and appointment information can be integrated into ongoing disease management.36 NS-specific evidence also suggests that family-centered nursing may improve quality of life and family satisfaction.37 These approaches are consistent with broader family-centered care models in pediatric chronic conditions, which commonly emphasize communication, family involvement, and access to services.38
Long-term support should also address caregiver and family well-being. Pediatric subspecialty care increasingly recognizes caregiver mental health as a clinically relevant component of chronic illness management.39 Evidence from broader pediatric chronic-disease populations indicates that parenting-stress interventions may reduce caregiver distress,40 while problem-solving skills training has shown benefits for parental depression, distress, parenting stress, quality of life, and some child and family outcomes.41 Case-management interventions may provide additional benefit by improving caregiver psychological well-being and satisfaction with services.42 Peer support may also be useful at critical points, particularly early after diagnosis or during transitions, when families are trying to make sense of practical disease-management demands.24
Importantly, stage-responsive support should not become another standardized pathway imposed equally on all families. Families facing low health literacy, rural access barriers, limited support, competing caregiving responsibilities, financial or time constraints, frequent relapse, or treatment resistance may require more active navigation and follow-up. Other families may need less practical assistance but more detailed information and greater participation in treatment decisions.
The journey map may therefore serve as a framework for repeatedly asking whether care demands exceed family capacity at a given stage and for directing support to the point at which that mismatch is greatest.
Limitations
This study was conducted at a single center within one regional healthcare and cultural context, which may limit the applicability of the findings to other settings. Future multicenter qualitative studies involving caregivers from more diverse clinical, geographic, and socioeconomic settings may help assess the transferability of the findings across different care contexts. In addition, the journey map was reconstructed retrospectively from cross-sectional interviews rather than prospectively observed over time.
Longitudinal studies following families from diagnosis through discharge, remission, and relapse would allow changes in caregiving needs and experiences to be examined more directly. The study also relied on caregiver accounts and did not include direct interviews with children; therefore, descriptions of children’s emotional, school, and social experiences reflect caregiver perceptions rather than children’s own perspectives. Finally, the primary interviewer had extensive pediatric nephrology experience and prior clinical contact with participating families.
Although this facilitated rapport and contextual understanding, it may also have influenced participant disclosure and interpretation of the data despite the use of independent coding, reflexive discussion, and member checking.
Conclusion
This study mapped a caregiver-informed care journey for children with NS across diagnosis and assessment, inpatient treatment, transition to home, and long-term management. The journey was recurrent rather than linear: uncertainty changed across stages, responsibility progressively shifted to families, and relapse could both reactivate distress and strengthen experiential competence. Caregiving burden depended not only on disease complexity but also on family capacity, resources, and healthcare access.
These findings support stage-responsive, capacity-sensitive, and family-centered care. Structured caregiver education, accessible counseling, effective communication with healthcare professionals, and continuity of support across hospital and home settings may be particularly important during discharge preparation, early home adaptation, and relapse management, while also addressing children’s psychosocial and developmental needs.