Abstract
Background
Circular external fixation using the Ilizarov method is widely used in paediatric orthopaedics for deformity correction and limb reconstruction. Although clinical outcomes are well documented, the psychosocial and caregiving experiences of families during prolonged frame treatment remain underexplored, particularly in low- and middle-income settings. This study aimed to explore parents’ lived experiences during their child's treatment with a circular external fixator.
Methods
A qualitative exploratory study was conducted in the paediatric orthopaedic unit of a tertiary care teaching hospital in central India. Parents or primary caregivers of children undergoing or recently completing Ilizarov treatment were recruited using purposive maximum-variation sampling. Data were collected through semi-structured, in-depth interviews and analysed using reflexive thematic analysis following Braun and Clarke's approach. Rigour was enhanced through investigator triangulation, reflexive journaling, and the maintenance of an audit trail.
Results
Twelve parents participated in the study. Six major themes emerged: Confronting the diagnosis, trust in the healthcare team, caregiving burden during the frame period, financial and travel hardship, emotional coping strategies, and recovery with reflection. Parents initially experienced fear and uncertainty but gradually adapted to the demands of frame care. Trust in clinicians and family support were key factors facilitating coping.
Conclusion
Ilizarov treatment places considerable psychosocial and caregiving demands on families. Strengthening family-centred care, including structured counselling and caregiver education, may improve treatment experiences for children undergoing limb reconstruction.
Clinical significance
Understanding caregiver experiences during Ilizarov treatment highlights the substantial psychosocial, logistical, and financial burden on families. Incorporating structured pre-treatment counselling, caregiver training, and family-centred support strategies may improve treatment adherence, reduce complications, and enhance overall patient and caregiver outcomes in paediatric limb reconstruction.
Keywords: Caregiver experiences, External fixation, Family-centred care, Ilizarov, Paediatric limb reconstruction, Qualitative research
Introduction
Circular external fixation using the Ilizarov method and limb reconstruction systems is widely employed in paediatric orthopaedics for deformity correction and limb lengthening. These treatments often require children to live with an external frame for months, shifting substantial responsibility to families for daily pin-site care, pain management, mobility assistance, and repeated hospital visits. The duration of Ilizarov treatment typically ranges from 3 to 8 months, depending on factors such as the underlying pathology (e.g., congenital deformity, post-traumatic sequelae), the magnitude of deformity correction or limb lengthening required, rate of distraction, bone regenerate quality, and occurrence of complications. Prolonged frame duration increases the caregiving burden and psychosocial impact on families.
While clinical outcomes and complication profiles of frame-based reconstruction are well described, the lived psychosocial experience of patients and parents is less consistently captured in orthopaedic literature. Adolescents living with an Ilizarov frame report major impacts on daily activity, comfort, appearance, and social life, illustrating how treatment extends beyond surgical recovery into identity and participation.1 Long-term evaluations of children who underwent Ilizarov limb lengthening similarly highlight psychological and social dimensions that may persist beyond frame removal.2 Patient-reported outcome research also demonstrates that health-related quality of life can be meaningfully affected during external fixator treatment, supporting the need to assess outcomes from the child and family perspective.3
Crucially, parents act as the primary coordinators of care and emotional support, yet qualitative evidence focusing on parents’ experiences, coping strategies, and support needs, particularly in the Indian context, remains limited. Recent qualitative work has begun to describe how families and clinicians navigate limb lengthening care, reinforcing the importance of communication and family-centred supports.4 This study seeks to understand parents’ lived experiences during their child's Ilizarov or circular fixator treatment and to identify coping mechanisms and unmet support needs to inform family-centred care.
Methods
Study Design
This study employed a qualitative phenomenological design to explore the lived experiences of parents during their child's Ilizarov or circular fixator treatment. The study was conducted from July 2024 to June 2025. A phenomenological approach was selected as it allows for a deep, idiographic examination of how individuals make sense of a major life phenomenon, capturing the ‘essence’ of the parental journey and coping processes that quantitative measures cannot reach. The study was designed and reported in accordance with the Standards for Reporting Qualitative Research (SRQR) guidelines.
Research Paradigm and Reflexivity
The study was grounded in an interpretivist/constructivist paradigm, specifically utilising interpretative phenomenological analysis (IPA). This assumes that individuals are self-interpreting beings and that their experiences are socially and contextually constructed. As the researchers possess clinical backgrounds in paediatric orthopaedics, a double hermeneutic approach was applied: The researchers attempted to make sense of the parents making sense of their experience. To maintain reflexivity and bracket personal biases, field notes and reflexive journals were maintained, and analytic decisions were triangulated within the research team to ensure findings remained grounded in the participants’ accounts.
Setting
The study was conducted in the paediatric orthopaedic unit of a tertiary care teaching hospital in central India, which manages a high volume of paediatric deformity correction and limb reconstruction cases. On average, 5–10 circular external fixation procedures are performed per month, with regular outpatient follow-up services dedicated to frame management, rehabilitation, and monitoring for complications. Interviews were held in a quiet private room within the hospital or conducted via secure video calls based on participant preference to ensure comfort and confidentiality.
Participants and Sampling
Participants were parents or primary caregivers of children (≤18 years) currently undergoing or within 12 months of completing Ilizarov or circular fixator treatment. Caregivers unable to provide informed consent or communicate in English, Hindi, or Marathi were excluded. Purposive maximum-variation sampling was employed to capture diverse perspectives across child age, diagnosis (congenital vs traumatic), stage of treatment, caregiver role (mother, father, grandparent), and rural–urban background. Sampling aimed to ensure informational richness rather than numerical representation. Recruitment continued until thematic saturation was achieved, defined as the point at which no new codes or concepts emerged from successive interviews. Based on the focused study scope and anticipated depth of interviews, an estimated sample of 10–15 participants were considered adequate, consistent with recommendations for qualitative thematic studies seeking depth rather than breadth.
Recruitment
Eligible families were identified during outpatient visits or inpatient care. Treating clinicians briefly introduced the study and referred interested parents to the research team. To minimise coercion, treating surgeons were not involved in consent or interviews. Written informed consent was obtained prior to participation.
Data Collection
Data were collected through individual semi-structured interviews. The interview guide was pre-tested to refine question wording, sequencing, and flow, ensure cultural appropriateness in the local context, and optimise interview duration. This process helped improve clarity and avoid participant discomfort while maintaining flexibility for in-depth exploration. The guide included open-ended questions and probes covering diagnosis experiences, hospital stay, daily caregiving during the frame period, practical and financial challenges, emotional impact, communication with the healthcare team, recovery, and reflections. Eligible parents were approached separately from the treating team to avoid coercion. After providing informed consent, interviews were conducted in a private hospital room or via secure video call according to participant preference. Interviews were audio-recorded using a primary and backup device.
Interviews were conducted in English, Hindi, or Marathi. Recordings were transcribed verbatim in the original language using a standardised transcription template, with preservation of pauses, emphasis, and non-verbal expressions. Where required, transcripts were translated into English for analysis. Immediately after each interview, the interviewer completed structured field notes documenting contextual observations, notable quotations, non-verbal cues, and reflexive reflections to support interpretation and transparency. Demographic and clinical information were collected using a brief proforma during recruitment. All transcripts were de-identified and stored on password-protected devices accessible only to the research team.
Data Analysis
Data were analysed using reflexive thematic analysis as described by Braun and Clarke.5 Analysis began concurrently with data collection but remained analytically distinct from the interview process. Each transcript was read repeatedly to achieve familiarisation, followed by inductive, line-by-line manual coding to identify meaningful segments related to parents’ experiences, challenges, and coping strategies.
Initial transcripts were independently coded by two researchers using printed transcripts and annotated documents. Codes were compared and discussed to develop a shared and evolving codebook. Subsequent transcripts were coded manually using the constant comparison approach, with codes refined, merged, or expanded as new insights emerged. No qualitative data analysis software was used; all coding, categorisation, and theme development were conducted manually using structured code sheets and summary tables.
Consistent with the study's iterative analytic plan, themes were developed progressively rather than after completion of all interviews. After the first 3–5 interviews, preliminary codes and candidate themes were identified. Thereafter, codebook growth was reviewed after every 2–3 interviews. A theme-tracking matrix was maintained to map the occurrence of themes across participants and monitor when interviews yielded repetition rather than new information.
Thematic saturation was defined a priori as the point at which two consecutive interviews produced no substantially new codes or themes, indicating informational redundancy, after which recruitment was discontinued. Final themes were reviewed, refined, and defined through team discussions. An analytic narrative was developed and supported with illustrative verbatim quotations to preserve participants’ voices and enhance credibility and transparency.
Strategies to Enhance Trustworthiness
Rigour was strengthened through multiple strategies: Investigator triangulation, peer debriefing, maintenance of an audit trail, and reflexive journaling. Member checking was performed with selected participants to verify the interpretation of findings. Thick descriptions and the use of verbatim quotations were employed to support transferability.
Ethical Considerations
Ethical approval was obtained from the institutional ethics committee prior to study commencement. Participation was voluntary, and parents could withdraw at any time without affecting clinical care. Given the potential for emotional distress when recounting experiences, interviews were conducted sensitively, and referrals for counselling were offered if required.
Results
Participant Demographics
A total of 12 parents participated in the study. Caregiver had a median age of 34 (IQR 28–41) (range, 32–53 years). The sample comprised 8 fathers (66.7%) and 4 mothers (33.3%). The majority of participants resided in rural areas (n = 9, 75%), with smaller proportions from urban (n = 2, 16.7%) and semi-urban (n = 1, 8.3%) settings (Table 1).
Table 1.
Participant and clinical characteristics
| Variable | Value |
|---|---|
| Caregiver age in years, median (IQR) | 34 (28–41) |
| Caregiver gender | |
| Male, n (%) | 8 (66.7) |
| Female, n (%) | 4 (33.3) |
| Residence | |
| Rural, n (%) | 9 (75) |
| Urban, n (%) | 2 (16.7) |
| Semi-urban, n (%) | 1 (8.3) |
| Monthly income in INR, median (IQR) | 12,000 (10,000–15,000) |
| Child age in years, median (IQR) | 10 (7–12) |
| Child gender | |
| Male, n (%) | 8 (66.7) |
| Female, n (%) | 4 (33.3) |
| Previous surgeries, median (range) | 1.1 |
| Treatment stage | |
| Post-removal, n (%) | 8 (66.7) |
| Distraction, n (%) | 4 (33.3) |
| Employment disruption | |
| Partial, n (%) | 9 (75) |
| Complete, n (%) | 3 (25) |
| School attendance | |
| Partial, n (%) | 11 (91.7) |
| None, n (%) | 1 (8.3) |
| Interview duration in minutes, median (IQR) | 35 (30–45) |
The mean reported monthly family income was ₹12,583 (range, ₹5,000–₹20,000), reflecting predominantly lower- to lower-middle socioeconomic status. Employment disruption related to caregiving responsibilities was common, with 9 caregivers (75%) reporting partial income loss and 3 caregivers (25%) reporting complete income loss during the treatment period.
The children had a median age of 10 years (IQR 7–12) (range, 4–15 years), and the cohort included 8 boys (66.7%) and 4 girls (33.3%). Indications for Ilizarov treatment included resistant clubfoot (left, n = 4; right, n = 2), post-septic hip sequelae (n = 2), multiple epiphyseal dysplasia (n = 2), and tibia vara (n = 2).
At the time of the interview, 8 children (66.7%) were in the post-frame removal phase, while 4 children (33.3%) were in the distraction phase. The mean number of previous surgical procedures prior to frame application was 1.1 per child.
Travel burden was substantial, with families reporting travel times ranging from 2 to 10 hours per hospital visit. The most commonly reported travel duration was 3 hours (n = 4), followed by 2 hours (n = 3), 6 hours (n = 2), 10 hours (n = 2), and 8 hours (n = 1). School attendance was notably affected during treatment; 11 children (91.7%) attended school partially, while 1 child (8.3%) did not attend school during the time period.
Regarding data collection, 8 interviews (66.7%) were conducted in person and 4 (33.3%) via secure online platforms. All interviews were conducted in Hindi, audio-recorded, transcribed verbatim, and subsequently translated into English. The mean interview duration was 37.5 minutes (range, 30–45 minutes). Field notes were documented immediately following each interview to support reflexive thematic analysis and enhance methodological rigour.
Thematic Findings
Reflexive thematic analysis identified six overarching themes capturing parents’ lived experiences across the treatment trajectory:
1. Confronting the diagnosis: Fear, hope, and decision-making
2. Trust in the healthcare team as an emotional anchor
3. The frame period: Disruption, physical burden, and adaptation
4. Financial strain and travel hardship
5. Emotional turbulence and coping mechanisms
6. Recovery, reflection, and meaning-making
These themes illustrate a progression from initial uncertainty to eventual adaptation and guarded optimism.
Theme 1: Confronting the Diagnosis: Fear, Hope, and Decision-making
The initial diagnosis was commonly described as emotionally overwhelming. Parents reported fear, anxiety, and uncertainty regarding surgical intervention and long-term outcomes. Several caregivers described the period as ‘painful,’ ‘nerve-wracking,’ or ‘scary,’ particularly when informed that a circular external fixator would be required.
‘It was very painful and worrying… I felt scared—wondering what would happen.’
Despite fear, hope emerged as a parallel emotion. Many parents framed their decision around preventing future disability and improving function.
‘If it is done in childhood, it will be fine; it won't happen when he is older.’
Decision-making was strongly influenced by trust in medical advice. Several participants emphasised that they proceeded because the doctor explained the benefits clearly and reassured them regarding outcomes.
Theme 2: Trust in the Healthcare Team as an Emotional Anchor
Across interviews, communication with the medical team was consistently described as positive and supportive. Clear explanations about surgery, anaesthesia, frame mechanics, and home care reduced anxiety and facilitated acceptance of treatment.
‘They explained how to tighten the nut, how to open it—everything was explained.’
Doctors were frequently described as patient, approachable, and reassuring. For many families, this communication mitigated fear and strengthened confidence.
‘Because of their courage, we prepared for the operation.’
However, brief moments of confusion were reported, particularly regarding frame adjustments and concerns about financial arrangements. These instances highlight the need for structured anticipatory counselling.
Theme 3: The Frame Period: Disruption, Physical Burden, and Adaptation
The frame period emerged as the most demanding phase. Daily caregiving tasks became physically strenuous and time-consuming. Parents described difficulties with bathing, dressing, toileting, mobility, and pin-site care.
‘Bathing, dressing, going to the bathroom—one person was needed all the time.’
Pin-site management, especially when discharge or bleeding occurred, was reported as distressing.
‘Blood or pus used to come out… it was very difficult to clean.’
Routine family functioning was disrupted. Caregivers described delayed household tasks, reduced attention to other children, and restructuring of daily schedules. Educational disruption was nearly universal. Many children either stopped attending school or attended partially.
‘Her school was missed and her studies have become weak.’
Despite these challenges, families gradually adapted by creating new routines and encouraging mobility within limitations.
Theme 4: Financial Strain and Travel Hardship
Travel burdens and economic strain were prominent themes, particularly among rural families. Parents described long journeys, early departures, waiting in queues, and repeated follow-up visits.
‘We had to leave at 5:00 a.m.… stand in line at one counter, then another.’
Income disruption compounded stress, with some parents reporting partial or complete loss of wages. Indirect costs such as transport, accommodation, and missed workdays were often more burdensome than procedural expenses. Government health schemes (e.g., Ayushman card) provided partial financial relief but did not eliminate indirect economic pressures.
Theme 5: Emotional Turbulence and Coping Mechanisms
Emotional responses evolved over time. Early stages were characterised by anxiety regarding surgical success and fear of failure.
‘Whether the leg will be straight or not… I was scared whether the money would be wasted.’
However, parents rarely expressed guilt; rather, they demonstrated resilience and responsibility. Coping strategies included:
Encouraging and reassuring the child
Engaging in humour and distraction
Relying on family unity
Seeking reassurance from doctors
Some caregivers described strong family solidarity during the treatment journey, framing adversity as a shared challenge.
Theme 6: Recovery, Reflection, and Meaning-making
Frame removal was widely described as a moment of relief and joy.
‘When the frame was removed, we were very happy.’
Functional improvement, even if gradual, reinforced parents’ belief that treatment was worthwhile. However, some children continued to experience mild pain or gait limitations, leading to cautious optimism rather than complete closure.
Looking back, parents identified the most difficult aspects as:
Watching the child in post-operative pain
Managing pin-site care
Frequent travel
Financial uncertainty
Despite hardships, all parents endorsed early intervention and advised other families not to delay treatment.
‘Do not panic; have trust in the doctors.’
A recurrent message emphasised early diagnosis and timely treatment to prevent future disability.
Integrative Interpretation
Taken together, the findings illustrate a trajectory from fear and uncertainty to adaptation and guarded hope. Trust in healthcare providers functioned as a stabilising factor throughout the journey. The frame period imposed substantial physical, logistical, and financial burdens; however, resilience was fostered through family cohesion, structured communication, and visible clinical improvement. These findings underscore the importance of structured pre-treatment counselling, anticipatory guidance regarding frame care, psychosocial support, and strategies to mitigate travel-related hardships in low-resource settings.
Discussion
Overview of Key Findings
This qualitative study provides insight into the parents’ lived experiences whose children underwent treatment with circular external fixation. The findings reveal a clear experiential trajectory characterised by initial fear and uncertainty at diagnosis, followed by gradual adaptation during the prolonged frame period, and eventual guarded optimism after clinical improvement. Parents frequently described emotional distress when confronted with the need for surgery and the visible presence of the frame, consistent with previous reports describing the psychosocial impact of limb reconstruction procedures on families.2,3 However, trust in the healthcare team and clear communication emerged as central stabilising influences that helped parents accept treatment decisions and sustain engagement with care. Families also experienced substantial caregiving demands, financial strain, and travel-related hardship, particularly among those from rural areas, reflecting broader barriers to accessing specialised paediatric orthopaedic care in low-resource settings.4,6 Despite these challenges, parental resilience and observable functional improvement in the child contributed to positive reflections on the treatment journey.
Psychological Impact on Families
Parents in this study described marked emotional distress at diagnosis and during the early treatment period, driven by fear of surgery, uncertainty about outcomes, and the difficulty of witnessing their child's pain. Similar findings have been reported in paediatric limb reconstruction literature, where external fixation was associated with reduced health-related quality of life during treatment and significant psychosocial burdens for both children and families.3 In addition, prospective paediatric trauma research has shown that children treated with an Ilizarov frame may experience quality-of-life disruption and psychological stress during recovery.7
Central Role of Trust and Communication with the Healthcare Team
Effective communication and trust in the healthcare team emerged as a central factor shaping parental coping during the treatment journey. Parents frequently reported that clear explanations about the surgical procedure, frame mechanics, and home-based care practices reduced anxiety and facilitated acceptance of treatment. Such communication fosters a therapeutic alliance that strengthens caregiver confidence and engagement in complex treatment regimens. Previous studies in paediatric orthopaedics similarly highlight that structured counselling and accessible clinician–family communication improve caregiver understanding and treatment adherence.4 More broadly, family-centred communication in paediatric care has been shown to enhance trust, reduce parental stress, and improve shared decision-making.8 These findings underscore the importance of structured anticipatory guidance and caregiver education during frame treatment.
Caregiving Burden during the Frame Period
The frame period represented the most demanding phase for caregivers, requiring continuous supervision and substantial physical assistance with daily activities such as bathing, dressing, mobility, and pin-site care. Parents frequently described restructuring household routines and dedicating significant time to managing the child's needs, often at the expense of work and attention to other family members. Similar caregiving challenges have been reported in limb reconstruction literature, where families experience considerable disruption to daily life during external fixation treatment.9 Studies of paediatric limb lengthening also highlight the intensive caregiver involvement required to manage frame adjustments, wound care, and mobility support throughout the treatment period.10
Financial and Logistical Challenges in a Low-resource Setting
Financial and logistical barriers emerged as significant challenges for families during the treatment course. Many caregivers in this study travelled long distances for follow-up visits and reported partial or complete loss of income due to caregiving responsibilities. These findings highlight the substantial indirect costs associated with prolonged orthopaedic treatment, particularly among rural families in low- and middle-income settings. Similar economic and travel burdens have been reported among families managing paediatric limb reconstruction procedures, where repeated hospital visits and long treatment durations impose considerable socioeconomic strain.1 Broader global health literature also emphasises that indirect costs such as transportation and wage loss often represent major barriers to accessing specialised care in LMICs.11
Family Resilience and Coping Strategies
Despite the substantial physical and emotional burden associated with prolonged external fixation treatment, many parents demonstrated notable resilience and adaptive coping strategies. Caregivers often described encouraging their child, using humour or distraction to alleviate distress, and relying on support from extended family members to sustain motivation during the treatment period. Such coping mechanisms helped families navigate uncertainty and maintain emotional stability. Similar adaptive responses have been described in families of children undergoing limb reconstruction procedures, where parental support and reassurance play a critical role in sustaining the child's engagement with treatment.4 Broader paediatric illness literature also emphasises that family cohesion and positive coping strategies significantly influence psychological adjustment and treatment experiences in children with chronic conditions.12
Implications for Family-centred Paediatric Orthopaedic Care
The findings of this study highlight the importance of strengthening family-centred care strategies for children undergoing circular external fixation. Structured pre-treatment counselling can help prepare families for the physical, emotional, and logistical demands of frame treatment. Demonstration-based training for pin-site care and frame adjustments may improve caregiver confidence and reduce complications during the home-care period. Additionally, integrating psychosocial support and counselling services may help families cope with treatment-related stress. These strategies align with broader paediatric care frameworks, emphasising family participation and shared decision-making to improve outcomes and caregiver satisfaction.8,13
Strengths
This study has several strengths. First, the qualitative design allowed an in-depth exploration of parents lived experiences during their child's treatment with circular external fixation, capturing perspectives that are often overlooked in quantitative outcome studies. Second, purposive maximum-variation sampling enabled inclusion of caregivers from diverse socioeconomic and geographic backgrounds, enriching the range of experiences represented. Third, the use of reflexive thematic analysis provided a systematic and transparent approach to interpreting participant narratives. Finally, adherence to the SRQR enhanced methodological rigour and reporting transparency, strengthening the credibility and trustworthiness of the study findings.
Limitations
This study has several limitations that should be considered when interpreting the findings. First, the research was conducted at a single tertiary care centre, which may limit the transferability of the results to other healthcare settings or cultural contexts. Second, the relatively small sample size, although consistent with qualitative research aiming for depth rather than breadth, may not capture the full range of caregiver experiences. Third, some interviews were conducted after frame removal, introducing the possibility of recall bias. Finally, interviews conducted in Hindi and later translated into English may have resulted in minor loss of contextual nuance despite careful transcription and translation procedures.
Directions for Future Research
Future research should expand upon these findings through multicentre qualitative studies to capture broader sociocultural and healthcare system perspectives. Longitudinal studies following families across different stages of treatment—from diagnosis to post-frame recovery—would help better understand how caregiver experiences and coping strategies evolve over time. Additionally, intervention-based research evaluating structured caregiver education, psychosocial counselling, and telemedicine-supported follow-up may help reduce caregiver burden during prolonged treatment. Integrating qualitative insights with patient-reported outcome measures could also provide a more comprehensive understanding of treatment impact on children and families. Such mixed-method approaches are increasingly recommended in paediatric health research to strengthen patient-centred care frameworks.14
Conclusion
Ilizarov treatment places considerable psychosocial, caregiving, and financial demands on families. Despite these challenges, strong trust in healthcare providers and family resilience enables caregivers to adapt throughout the treatment journey. Strengthening family-centred care, including structured counselling and caregiver support, may improve treatment experiences for children undergoing complex limb reconstruction.
Clinical Significance
The findings of this study underscore the critical role of caregiver experience in the success of paediatric limb reconstruction using circular external fixation. High caregiving demands, financial strain, and travel burden may adversely affect treatment adherence and outcomes, particularly in low-resource settings. Integrating structured caregiver education, anticipatory guidance, and psychosocial support into routine clinical practice can enhance family engagement, improve home-based care, and potentially reduce complications. These insights support a shift toward more comprehensive, family-centred models of care in limb reconstruction programs.
Declarations
Ethics Approval and Patient Consent to Participate
Ethical approval for this study was obtained from the Institutional Ethics Committee, All India Institute of Medical Sciences (AIIMS), Nagpur (IEC Number: IEC/Pharma/2026/73). Written informed consent was obtained from all participants prior to inclusion in the study.
Patient Consent for Publication
Written informed consent for publication of anonymised data and quotations was obtained from all participants. No identifiable personal information is included in this manuscript.
Animal Studies
Not applicable. This study did not involve animal subjects.
Availability of Data and Materials
The datasets generated and/or analysed during the current study are not publicly available due to the qualitative nature of the data and the need to maintain participant confidentiality but are available from the corresponding author upon reasonable request.
Clinical Trial Registry Number
Not applicable. This study is not a clinical trial.
PROSPERO Registry Number
Not applicable. This study is not a systematic review.
Artificial Intelligence (AI) Disclosure
No AI-assisted technologies were used in the preparation of the manuscript.
Acknowledgements
The authors would like to thank all participating parents and caregivers for sharing their experiences, as well as the staff of the paediatric orthopaedic unit at AIIMS Nagpur for their support in facilitating this study.
Authors' Contributions
Sitanshu Barik: Conceptualisation, methodology, supervision, writing – original draft.
Denish Chandrakar: Data curation, investigation.
Piyush Chauhan: Data curation, investigation.
Saurabh Sah: Methodology, formal analysis, writing – review and editing.
Samir Dwidmuthe: Supervision, writing – review and editing.
All authors have read and approved the final manuscript.
Footnotes
Source of support: Nil
Conflict of interest: None
References
- 1.Martin L, Farrell M, Lambrenos K. Living with the Ilizarov frame was better than expected. Evid Based Nurs. 2004;7(2):60. doi: 10.1136/ebn.7.2.60. [DOI] [PubMed] [Google Scholar]
- 2.Ramaker RR, Lagro SW, van Roermund PM, et al. The psychological and social functioning of 14 children and 12 adolescents after Ilizarov leg lengthening. Acta Orthop Scand. 2000;71(1):55–59. doi: 10.1080/00016470052943900. [DOI] [PubMed] [Google Scholar]
- 3.Montpetit K, Hamdy RC, Dahan-Oliel N, et al. Measurement of health-related quality of life in children undergoing external fixator treatment for lower limb deformities. J Pediatr Orthop. 2009;29(8):920–926. doi: 10.1097/BPO.0b013e3181c1e2e2. [DOI] [PubMed] [Google Scholar]
- 4.Ringnér A, Ljung M, Rullander A-C. Parents' and nurses’ experiences when children undergo limb lengthening treatment. Int J Orthop Trauma Nurs. 2025;57:101176. doi: 10.1016/j.ijotn.2025.101176. [DOI] [PubMed] [Google Scholar]
- 5.Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101. doi: 10.1191/1478088706qp063oa. [DOI] [Google Scholar]
- 6.Hamilton AA, Mehta R, Sue Epstein B, et al. Core psychosocial issues for children and adolescents in the context of limb lengthening and reconstruction surgery treatment. J Child Orthop. 2021;15:122–129. doi: 10.1302/1863-2548.15.200207. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Johnson L, Messner J, Igoe EJ, et al. Quality of life and post-traumatic stress symptoms in paediatric patients with tibial fractures during treatment with cast or Ilizarov frame. Injury. 2020;51(2):199–206. doi: 10.1016/j.injury.2019.10.077. [DOI] [PubMed] [Google Scholar]
- 8.Committee on Hospital Care and Institute for Patient and Family Centered Care Patient- and family-centered care and the pediatrician's role. Pediatrics. 2012;129(2):394–404. doi: 10.1542/peds.2011-3084. [DOI] [PubMed] [Google Scholar]
- 9.Richard HM, Nguyen DC, Birch JG, et al. Clinical implications of psychosocial factors on pediatric external fixation treatment and recommendations. Clin Orthop Relat Res. 2015;473(10):3154–3162. doi: 10.1007/s11999-015-4276-z. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Shahcheraghi GH, Javid M, Hadavi F. Pediatric lower limb Ilizarov lengthening with functional evaluation in adulthood: A report on underprivileged patients. J Orthop. 2014;12(Suppl 1):S69–S74. doi: 10.1016/j.jor.2014.06.010. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Kruk ME, Gage AD, Joseph NT, et al. Mortality due to low-quality health systems in the universal health coverage era: A systematic analysis of amenable deaths in 137 countries. Lancet. 2018;392(10160):2203–2212. doi: 10.1016/S0140-6736(18)31668-4. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Qiu Y, Xu L, Pan Y, et al. Family resilience, parenting styles and psychosocial adjustment of children with chronic illness: A cross-sectional study. Front Psychiatry. 2021;12:646421. doi: 10.3389/fpsyt.2021.646421. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.O'Brien BC, Harris IB, Beckman TJ, et al. Standards for reporting qualitative research: A synthesis of recommendations. Acad Med. 2014;89(9):1245–1251. doi: 10.1097/ACM.0000000000000388. [DOI] [PubMed] [Google Scholar]
- 14.Goldman RE, Parker DR, Brown J, et al. Recommendations for a mixed methods approach to evaluating the patient-centered medical home. Ann Fam Med. 2015;13(2):168–175. doi: 10.1370/afm.1765. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The datasets generated and/or analysed during the current study are not publicly available due to the qualitative nature of the data and the need to maintain participant confidentiality but are available from the corresponding author upon reasonable request.