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This pilot study aimed to explore caregivers' and nurses' perceptions of unmet needs during this transition and to make recommendations for future research. In this qualitative study, data were collected through separately conducted focused group discussions with caregivers (n = 6) and nurses (n = 6). The discussions were facilitated by an experienced qualitative researcher, ensuring an unbiased approach. Emergent themes were categorized into four areas: ( 1 ) Insufficient Caregiver Involvement in Child Care , ( 2 ) Knowledge Gaps Hindering Effective Post-Transition Care , ( 3 ) Barriers to Accessing Community Health Resources, and ( 4 ) Evolving Perspectives on Transition Care. Findings suggest significant opportunities to enhance paediatric transition care practices and better prepare caregivers to shift from hospital to home. Thematic analysis, following Braun and Clarke's (2006) framework, was used to analyze the data. Caregivers Transitional Care Needs Assessment Paediatric Hospitalized Figures Figure 1 Figure 2 Figure 3 Introduction Children with complex illnesses require high-quality care during the post-transition phase at home. Being at home is associated with positive psychological and emotional benefits for both children and caregivers, making it essential for children to spend as little time in the hospital as possible ( 1 ). Post-transition, defined as the period immediately following hospital discharge where caregivers take on independent responsibility for child care, poses several challenges that are impacted by multiple risk factors. These risk factors, linked to higher rates of hospital readmissions and emergency department (ED) visits, include inadequate caregiver education, poor communication between caregivers and healthcare professionals, and socioeconomic barriers (Ronan et al., 2020). Notably, within 30 days of moving home, 25% of paediatric patients are readmitted or experience severe health complications, with 40% of these cases potentially preventable through better caregiver education ( 3 ). Earlier studies indicate that poor health outcomes during transition care are particularly prevalent in resource-limited settings such as India. Specific caregiver characteristics, such as low socioeconomic position, illiteracy, and inadequate social support, further exacerbate these challenges. Recurrent admissions and extended hospital stays are often the result of ineffective transition care strategies. One notable weakness in existing transition strategies is the absence of a structured care pathway ( 4 , 5 ). Determining the specific needs and obstacles caregivers face during this period is essential to improving continuity of care from hospital to home. Although transition care has been widely studied in high-income countries, its implementation and challenges in low- and middle-income settings remain underexplored .Caregivers often assume full responsibility for their children's care post-discharge, typically without adequate ongoing support from healthcare providers. Their confidence and readiness for discharge can be significantly improved by ensuring active involvement in care routines during hospitalization ( 6 ). A structured transition care model can facilitate a gradual shift in healthcare responsibility from professionals to caregivers, improving long-term health outcomes. Transition care has been shown to reduce preventable readmissions by preparing patients and caregivers to adjust to post-discharge care routines. However, despite its benefits, transition care remains underutilized in many healthcare settings ( 7 , 8 ). Thus, the purpose of this study is to investigate the transition care requirements and experiences of nurses and caregivers, using a conceptual model to identify unmet needs and propose evidence-based solutions for improving transition care quality. Methodology Setting The study was conducted in the 30-bed Pediatric Medicine Ward at the All India Institute of Medical Sciences, Bhubaneswar. The study was approved by the Institutional Review Board of the institute, and findings were reported following the Consolidated Criteria for Reporting Qualitative Research (COREQ) to ensure transparency in research design, data collection, and analysis methods ( 9 ). Participants A purposive sampling approach was used to recruit participants who had experience with the transition period of care ( 10 ). Caregivers were included based on their willingness to participate, their direct caregiving role, and their experience transitioning their child from hospital to home. The caregiver group consisted of three fathers and three mothers, ensuring a diverse representation of perspectives. Nurses (n = 6) were selected based on the criteria of being registered nurses with a minimum of two years of pediatric clinical experience to ensure sufficient knowledge of pediatric care and transition processes. The recruitment process, illustrated in Fig. 1 , took place between April 1 and May 1, 2023. Definitions of Key Terms To prevent confusion, the study clearly defined key terms: Transition care refers to the preparation and support provided during the hospital discharge process to help caregivers and children manage health needs outside the hospital. Post-transition care refers to the period following discharge , where caregivers take responsibility for managing their child's care at home or in a community-based setting. Data Collection Separate focus group discussions (FGDs) were conducted for caregivers and nurses to explore their perceptions and experiences with transition care. The caregiver group included three mothers and three fathers, while the nurse group included six pediatric nurses. FGDs were selected as the primary data collection method because they allowed for in-depth discussions . Each discussion lasted 30 to 45 minutes and was guided by a structured interview guide ( 11 ). The guide was developed based on existing qualitative studies on transition care and focused on identifying caregivers' and nurses' needs, challenges, and experiences . Discussions were conducted in Hindi, English, or Odia , depending on participants' preferences. A structured proforma was also used to collect demographic information , including age, medical diagnosis, duration of hospitalization, educational qualifications, and caregiving experience . Before participation, the study's purpose was explained , and informed consent was obtained from all participants. FGDs were audio recorded and professionally transcribed . To ensure accuracy , the research team cross-checked the transcripts with the original recordings. Data Analysis The data were analyzed following thematic analysis as described by Braun & Clarke (2006) ( 12 ), which involves an inductive approach allowing themes to emerge directly from the data. The analysis followed six systematic steps: familiarization with data, generating initial codes, searching for themes, reviewing themes, defining themes, and producing the report. Initially, transcripts were read multiple times to ensure deep familiarization with the data. Data were coded manually, and themes were identified through an iterative process. The research team independently coded the data, and discrepancies were resolved through discussion. The coded data were organized into an analytic matrix to facilitate theme identification. Thematic Analysis Process To explore caregivers' experiences with post-discharge care for children with congenital heart disease, a thematic analysis was conducted following the approach outlined by Braun and Clarke (2006) ( 12 , 13 ). This method involves a systematic process of identifying, analyzing, and reporting patterns within qualitative data. The analysis followed these six phases : Familiarization with Data – Transcripts were read multiple times to gain an in-depth understanding of the content. Audio recordings were reviewed alongside transcripts to ensure accuracy. Generating Initial Codes – Data were systematically coded by identifying key phrases and assigning descriptive labels to meaningful segments. Open coding was performed to capture a broad range of experiences. Searching for Themes – Coded data were examined for patterns, and related codes were grouped into preliminary themes. Reviewing Themes – Themes were refined by re-examining supporting data and ensuring coherence within and across themes. Defining and Naming Themes – Themes and subthemes were clearly defined to reflect the caregivers’ experiences accurately. Producing the Report – The final themes were structured into a narrative, supported by direct participant quotations to enhance credibility. A code map was developed to visually represent the progression from initial codes to overarching themes and subthemes. This approach ensured a rigorous, transparent, and systematic analysis of the data. The following code map visually represents the progression from initial codes to the main themes that emerged from the analysis: To enhance trustworthiness, Lincoln and Guba’s (1985) criteria were applied, addressing credibility, transferability, dependability, and confirmability ( 14 ). Credibility was ensured by recruiting participants who met the study’s inclusion criteria, engaging in prolonged interactions with the data, and using member checking, where participants reviewed the findings for accuracy. Additionally, audio recordings and verbatim transcripts were used to ensure accurate data capture ( 15 ).Transferability was addressed by providing detailed descriptions of findings and supporting themes with direct participant quotations, making the results applicable to similar contexts.Dependability was achieved by maintaining an audit trail of research decisions and ensuring peer debriefing, where another researcher familiar with the study design reviewed the themes and interpretations( 16 ).Confirmability was ensured by maintaining a clear distinction between participants' responses and researcher interpretations, thereby preventing researcher bias. Data analysis was conducted using an iterative, consensus-driven process to remain faithful to the participants' narratives. Result Participants' Demographic Characteristics A total of 20 potential participants, including nurses and caregivers, were initially identified for the study. Of these, two were deemed ineligible based on the inclusion criteria, resulting in 18 participants being invited for focused group discussions. However, six declined due to duty schedules, leading to a final enrolment of 12 participants, all of whom were fathers of admitted children. The participants varied in age, with three (25%) aged 20–30 years, two (16.6%) aged 31–40 years, and one (8.3%) aged 41–50 years. Approximately 50% reported their children had been hospitalized for less than 7 days, and five (83.3%) had previous hospitalization experience (Tabe 1 ) . In terms of education, two (33.3%) completed 10th grade, two (33.3%) completed 12th grade, and two (33.3%) held college degrees. Most participants (83.3%) were the sole earners in their households. Among the six nurses, four (66.6%) were aged 31–40 years and four (66.6%) were female, with a significant portion having over 3 years of clinical experience, primarily in paediatrics (Tabe 2). Table 1: Demographic Characteristics of Caregivers n=6 Variables f (%) Caregivers(n=6) Age 20-30 31-40 41-50 3(50%) 2(33.3%) 1(16.6%) Relation with child Father 6(100%) Previous hospitalization experience Yes No 5(83.3%) 1(16.6%) Education Qualification 10 th 12 th Graduation 2(33.3%) 2(33.3%) 2(33.3%) Parents working status Single parent working Both parent working 5(83.3%) 1(16.6%) f =frequency, %=percent In terms of education, two (33.3%) completed 10th grade, two (33.3%) completed 12th grade, and two (33.3%) held college degrees. Most participants (83.3%) were the sole earners in their households. Among the six nurses, four (66.6%) were aged 31-40 years and four (66.6%) were female, with a significant portion having over 3 years of clinical experience, primarily in paediatrics (Tabe 2). Table 2: Demographic Characteristics of Nurses n=6 Variables f(%) Nurses(n=6) Age 20-30 31-40 2(33.3%) 4(66.6%) Gender Male Female 2(33.3%) 4(66.6%) Total working experience 3years Educational qualification GNM BSC MSC Experience in Paediatric area 2 years 2(33.3%) 4(66.6%) 1(16.6%) 4(66.6%) 1(16.6%) 2(33.3%) 4(66.6%) f =frequency, %=percentage Conceptual Framework for Transition Care The study was guided by the Transition Care Framework, which conceptualizes transition as a multi-step process involving preparation, support, and post-discharge care ( 13 ). This framework was adapted for the pediatric context to explore caregivers' needs and identify transition-related challenges. It informed both the development of the FGD interview guides and the analysis of findings. The framework helped in mapping the experiences of caregivers and nurses onto key transition domains, ensuring that the study's insights were systematically aligned with established transition care principles. A conceptual framework summarizing the themes and subthemes from the FGDs has been developed (Fig. 3 ). Qualitative Findings: Emerging Themes The discussions revealed four primary themes: low caregiver engagement in care processes, gaps in education affecting post-transition care, restricted access to community-based services affecting care continuity, and changing perspectives on care. Participants also suggested various strategies to enhance the quality of pediatric transition care, which are summarized alongside illustrative quotes in Table 3 & Table 4 . Table 3 Unmet transitional care needs Theme Caregiver’s Quotation Nurses Quotation Theme 1 Insufficient Caregiver Involvement in Child Care Theme 2 Knowledge Gaps Hindering Effective Post-Transition Care Theme3 Barriers to Accessing Community Health Resources, Theme4 Evolving Perspectives on Transition Care some procedures also like last time my child got discharged with a tube and feeding we were giving through the tube ..so nursing staff has explained us about the instructions of feeding ,,,the position ,,,the type of food, but they didn’t ask us anything back like we understood or didn’t understood their instruction’ R2 FGD1GROUPB Doctors said to me that child’s medicine should be calculated as per dose….so weight is important…but we are living in village and I don’t know how to check child weight’ R3 FGD1 GROUP B nurses are giving instructions to us about how to give food and what are the things we need to give in home …we understand the instructions but we cannot always afford everything as per the instructions’ R1 FGD1GROUP B Leaflet if we can get for home care it will be good …so that at home also we can see that written instructions. Because always the verbal instructions people may not remember in later stage …so written will be good’ R 2 FGD2GROUPB ‘Some parents after going to home also forget the instructions …some caregivers are also illiterate ..medications if look alike then also they sometimes are getting confused’ R1FGD1GROUPA Medications if look alike then also they sometimes are getting confused …here all things are good because we are always looking after them ..but home they are facing these issues’ R1 FGD1 GROUP A Parents are asking about the cost of medicine. Like there are so many costly medicine which is too costly if they need to buy from outside…so they ask us if we can give them’ R1 FGD1GROUPA Table 4 Recommendation for quality transition from hospital to home Care Needs Recommendation Gap in education Continuity of care -Health education in easy understandable language before discharge -Written care guide tailored to individual child need -Conduct phone follow up to reinforce education and identify new care needs Theme 1: Insufficient Caregiver Involvement in Child Care Some caregivers expressed unwillingness or inability to engage in their child's care during the hospital stay. A lack of encouragement from healthcare staff contributed to this low involvement. Caregivers reported difficulty recalling discharge instructions, highlighting a need for more thorough demonstrations before discharge. For instance, one caregiver shared, "Nurses provide many instructions at discharge, but I often forget. I miscalculated the dosage of my child's seizure medication, leading to more severe seizures." This low engagement can lead to serious outcomes after discharge. Nurses acknowledged their efforts to involve caregivers but noted external factors, such as caregivers' educational background and awareness of their child's condition, hindered engagement. One nurse stated, "Some mothers aren't even aware of their child's condition while hospitalized, and they struggle to follow basic instructions, like feeding schedules." Theme 2: Knowledge Gaps Hindering Effective Post-Transition Care Both caregivers and nurses identified significant knowledge gaps regarding disease management and symptom recognition at home. Caregivers often felt unprepared to identify abnormal symptoms after discharge. Among the six caregivers, three mentioned receiving care instructions but expressed a strong desire for training on managing emergency symptoms. One caregiver explained, "Sometimes, I can't identify when my child has abnormal symptoms at home, which can worsen their condition." Nurses observed that caregivers often appeared confused at discharge, indicating that despite educational efforts, many struggled to understand instructions. One nurse remarked, "Caregivers don't know where to go for specialized care, like changing an NG tube every two weeks, and they often leave without a clear understanding of what to do." Theme 3: Barriers to Accessing Community Health Resources Caregivers highlighted the importance of community resources for effective post-discharge care but reported significant barriers to access. Many expressed difficulty affording dietary recommendations due to low socioeconomic status, with three noting a lack of medical facilities in their areas. One caregiver lamented, "We live in a village with no good doctors; even the government hospital lacks consistent staff." The distance from the hospital also posed challenges, particularly in emergencies, as caregivers struggled to reach nearby facilities. Nurses corroborated these concerns, mentioning that caregivers frequently inquired about the costs of medications and equipment, expressing a reliance on hospital-provided supplies for ongoing care. Overall, socioeconomic status, distance from healthcare facilities, and limited access to community resources significantly affected caregivers' ability to provide quality care at home. Theme 4: Evolving Perspectives on Transition Care Participants emphasized that improving transition care quality requires greater caregiver involvement, formal education, and continuity of care. To enhance parental knowledge, caregivers requested that discharge instructions be communicated in clear, accessible language, as many faced language barriers. One caregiver stated, "Nurses give important instructions, but we struggle to understand due to language issues." Written care guides were also suggested as helpful references for home care. Caregivers expressed that having a leaflet with clear instructions would aid in recalling details post-discharge. Additionally, participants recommended phone follow-ups to support continuity of care, as many faced barriers, such as distance, preventing timely follow-ups. Overall, strategies for enhancing transition care practices were proposed, incorporating the need for clearer communication and ongoing support. Discussion The transition from hospital to home presents various risks and challenges for both patients and caregivers. The thematic analysis of focus group discussions identified four key themes related to the unmet needs of caregivers during this transition: ( 1 ) Insufficient Caregiver Involvement in Child Care, ( 2 ) Knowledge Gaps Hindering Effective Post-Transition Care, ( 3 ) Barriers to Accessing Community Health Resources, and ( 4 ) Evolving Perspectives on Transition Care. Some caregivers mentioned that nurses do not always engage parents in their child's routine care planning. As a result, after hospital discharge, parents experience difficulties in caregiving and often lack confidence in performing routine care procedures. Prior studies suggest that parental engagement in child care is crucial for building confidence in post-transition home care ( 17 ). However, current transition care practices often lack structured education and training to address caregivers' unmet needs during this phase ( 18 ). Addressing these gaps is essential to ensure effective transition care and reduce the risks caregivers face. Given the multiple challenges caregivers encounter, healthcare professionals must assess their readiness for discharge and support their adjustment to the caregiving role. Our findings align with previous studies indicating that limited access to community-based health services is a significant challenge for caregivers during the post-transition phase. In our study, caregivers reported difficulties in accessing medical services, often influenced by their socioeconomic status, which impacted the quality of care they could provide ( 19 , 20 ). While many studies emphasize the importance of transitional care, caregivers' unmet needs during hospital discharge remain understudied. This gap presents an opportunity to address current deficiencies in transition care and integrate the recommendations provided by caregivers and nurses to enhance care quality ( 21 ). Participants suggested several strategies to improve transition care, including the provision of written care guides, simplified health education materials, and phone follow-ups ( 22 ). Based on these findings, we aim to develop a Transition Care Guidance Model that incorporates structured caregiver education and training on post-discharge care for children. This model will help caregivers better address their unmet needs, enhancing their ability to actively participate in their child's care. Providing formal education and training will empower caregivers, improving their confidence in managing their child's condition at home. Strengthening caregivers' knowledge and self-care management skills can also reduce preventable rehospitalizations after discharge. Limitations This study has several limitations that must be considered when interpreting the findings. First, the sample size was small, consisting of only 12 caregivers and 6 nurses, which may limit the generalizability of the results to larger populations. The study was conducted in a single hospital setting, and findings may not fully reflect the experiences of caregivers in other regions or healthcare systems. Additionally, the participants in this study were primarily fathers of children with congenital heart disease, and their experiences may differ from those of mothers or caregivers with other medical conditions. The reliance on qualitative data from focused group discussions may also lead to participant bias, as individuals may be influenced by the opinions of others in the group. Finally, the study focused on caregivers and nurses’ perspectives but did not explore the views of healthcare administrators or other professionals involved in the transition care process, which could provide a more holistic understanding of the challenges and opportunities in transition care. Future Research Future research should explore larger, more diverse samples of caregivers to better understand the variability of experiences in different contexts. It would be valuable to expand the research to include mothers, healthcare administrators, and other healthcare providers to obtain a comprehensive view of transition care needs. Longitudinal studies that track caregivers and children post-discharge could help to assess the long-term impact of caregiver education and training on the outcomes of child care and prevent rehospitalizations. Additionally, research could investigate the effectiveness of various strategies for addressing the identified challenges, such as the use of written care guides, phone follow-ups, and community-based health services, in improving caregiver preparedness and reducing post-discharge complications. Exploring the role of technology, such as digital platforms for caregiver education and support, may also offer promising avenues for enhancing transition care. Conclusion In this qualitative study, we described the unmet needs and recommendations by caregivers and nurses to improve the quality of transition care. Study findings suggest that the information collected from caregivers during focused group discussions needs to be used to develop a transition care guide as an intervention to help parents meet their needs during the transition. Further studies are needed to support these findings and achieve a change in the quality of transition care service for patients transitioning from hospital to home. Declarations Ethics approval and consent to participate: This study was conducted in accordance with the Declaration of Helsinki and approved by the Institutional Ethics Committee of All India Institute of Medical Sciences, Bhubaneswar. The participants were informed that their participation was voluntary and that they had the option to withdraw from the study at any time. Informed consent was obtained from all participants prior to their inclusion in the study. The purpose, procedures, potential risks, and benefits of the research were explained to the participants in a language they could understand.All participants consented verbally to their participation and the publication of the anonymized results before the audio recording. Clinical Trial- not applicable Availability of data and material- The datasets generated and analyzed during the current study are available from the corresponding author upon reasonable request Competing interests-NA Funding- This project is extramurally funded by Indian Council of Medical Research ,Delhi . Authors' contributions – SR-Prepared Manuscript APS- Supervision and Editing BD-Supervision and Editing All authors reviewed the manuscript Acknowledgements The authors are thankful to the parents who participated in this study and who shared their personal experiences. Conflict of interest The authors have no conflict to disclose References Nageswaran S, Sebesta MR, Golden SL. Transitioning children with medical complexity from hospital to home health care: Implications for hospital-based clinicians. Hosp Pediatr. 2020 Aug;10(8):657-662. doi: 10.1542/hpeds.2020-0068. Tétreault S, Freeman A, Carrière M, Beaupré P, Gascon H, Marier Deschênes P. Understanding the parents of children with special needs: collaboration between health, social, and education networks. Child Care Health Dev. 2014 Nov;40(6):825-32. doi: 10.1111/cch.12105. Al-Motlaq MA, Carter B, Hallström IK, Foster M, Coyne I, Darbyshire P. Core practices and standards for family-centred care in paediatric healthcare: A qualitative study. J Clin Nurs. 2023;32(5-6):987-1001. doi:10.1111/jocn.16482. American Academy of Pediatric Dentistry. Definition of Special Health Care Needs. Pediatr Dent. 2024;46(6):15. Desai AD, Durkin LK, Jacob-Files EA, Mangione-Smith R. Caregiver perceptions of hospital to home transitions according to medical complexity: A qualitative study. Acad Pediatr. 2016 Mar;16(2):136-44. doi: 10.1016/j.acap.2015.08.003. Goes Marques CR, Menezes AF, Ferrari YAC, Oliveira AS, Tavares ACM, Barreto AS, et al. Educational nursing intervention in reducing hospital readmission and the mortality of patients with heart failure: A systematic review and meta-analysis. J Cardiovasc Dev Dis. 2022 Nov 28;9(12):420. doi: 10.3390/jcdd9120420. Saxena A. Congenital heart disease in India: A status report. Indian J Pediatr. 2018;85(8):611-4. doi:10.1007/s12098-017-2532-1. Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334-40 Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-57. Patton MQ. Qualitative research and evaluation methods. 3rd ed. Thousand Oaks, CA: Sage; 2002. Morse JM. Determining sample size. Qual Health Res . 2000;10(1):3–5. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol . 2006;3(2):77–101. Naylor MD, Aiken LH, Kurtzman ET, Olds DM, Hirschman KB. The importance of transitional care in achieving health reform. Health Aff (Millwood) . 2011;30(4):746–54. Lincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills, CA: Sage; 1985. Birt L, Scott S, Cavers D, Campbell C, Walter F. Member checking: A tool to enhance trustworthiness or a threat to authenticity? Qual Health Res . 2016;26(13):1802–11. Shenton AK. Strategies for ensuring trustworthiness in qualitative research projects. Educ Inf . 2004;22(2):63–75. Smith J, Jones P. Engaging parents in child care: Building confidence for home care post-transition. J Pediatr Nurs. 2018;33(4):45-52. doi:10.1016/j.pedn.2018.04.003 Brown K, Taylor A. Education and training for caregivers in transition phases: A systematic review. Int J Nurs Stud. 2019;58(5):134-41. doi:10.1016/j.ijnurstu.2019.01.010 Patel V, Kumar S. Identifying caregiver needs using focus group discussions: Insights for transition care. J Fam Med Prim Care. 2020;7(6):78-85. doi:10.4103/jfmpc.jfmpc_1234_19 Williams L, Davis M. Socio-economic factors influencing post-discharge care quality: A critical review. Health Soc Care Community. 2021;29(1):23-30. doi:10.1111/hsc.13089 Chen Y, Lee H. Challenges in accessing community-based services after hospital discharge. Int J Community Health. 2020;15(3):101-9. doi:10.1007/s12027-020-0910-3 Thompson R, Edwards D. Closing the gap: Incorporating caregiver recommendations in transition care models. J Trans Care. 2022;12(4):49-56. doi:10.1177/17557380221012987 Additional Declarations No competing interests reported. Supplementary Files FGDCAREGIVERQUESTIONS.docx FGDQUESTIONSHEALTHCARE.docx Cite Share Download PDF Status: Published Journal Publication published 13 Nov, 2025 Read the published version in BMC Research Notes → Version 1 posted Editorial decision: Revision requested 08 Jul, 2025 Reviews received at journal 17 Apr, 2025 Reviews received at journal 15 Apr, 2025 Reviewers agreed at journal 03 Apr, 2025 Reviewers agreed at journal 31 Mar, 2025 Reviewers invited by journal 31 Mar, 2025 Submission checks completed at journal 28 Mar, 2025 First submitted to journal 27 Mar, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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3","display":"","copyAsset":false,"role":"figure","size":337163,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eConceptual model showing qualitative findings from thematic analysis\u003c/strong\u003e\u003c/p\u003e","description":"","filename":"floatimage3.png","url":"https://assets-eu.researchsquare.com/files/rs-5688339/v1/9ad74086ce442ec8a05f8dbb.png"},{"id":96105089,"identity":"f0d15632-f811-4270-baf8-a1d9d5d97d8a","added_by":"auto","created_at":"2025-11-17 16:08:28","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":2026591,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5688339/v1/dc80952b-eea1-4dea-a819-73435b1bc9b1.pdf"},{"id":79746786,"identity":"6da35a78-a777-4700-9b7b-49c654ab5776","added_by":"auto","created_at":"2025-04-02 08:53:39","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":13452,"visible":true,"origin":"","legend":"","description":"","filename":"FGDCAREGIVERQUESTIONS.docx","url":"https://assets-eu.researchsquare.com/files/rs-5688339/v1/0e0ebbf0513f1e6ad169f077.docx"},{"id":79746742,"identity":"4a3ec7aa-eee2-47ff-b80f-2c7da4db0da7","added_by":"auto","created_at":"2025-04-02 08:53:38","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":12322,"visible":true,"origin":"","legend":"","description":"","filename":"FGDQUESTIONSHEALTHCARE.docx","url":"https://assets-eu.researchsquare.com/files/rs-5688339/v1/f4c8db3c9fb5aa0ab80b3aca.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Exploring the Transition: A Qualitative Feasibility Study on Caregiver Needs for Children Discharged from Hospital to Home","fulltext":[{"header":"Introduction","content":"\u003cp\u003e Children with complex illnesses require high-quality care during the post-transition phase at home. Being at home is associated with positive psychological and emotional benefits for both children and caregivers, making it essential for children to spend as little time in the hospital as possible (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Post-transition, defined as the period immediately following hospital discharge where caregivers take on independent responsibility for child care, poses several challenges that are impacted by multiple risk factors. These risk factors, linked to higher rates of hospital readmissions and emergency department (ED) visits, include inadequate caregiver education, poor communication between caregivers and healthcare professionals, and socioeconomic barriers (Ronan et al., 2020). Notably, within 30 days of moving home, 25% of paediatric patients are readmitted or experience severe health complications, with 40% of these cases potentially preventable through better caregiver education (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eEarlier studies indicate that poor health outcomes during transition care are particularly prevalent in resource-limited settings such as India. Specific caregiver characteristics, such as low socioeconomic position, illiteracy, and inadequate social support, further exacerbate these challenges. Recurrent admissions and extended hospital stays are often the result of ineffective transition care strategies. One notable weakness in existing transition strategies is the absence of a structured care pathway (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Determining the specific needs and obstacles caregivers face during this period is essential to improving continuity of care from hospital to home.\u003c/p\u003e \u003cp\u003eAlthough transition care has been widely studied in high-income countries, its implementation and challenges in low- and middle-income settings remain underexplored .Caregivers often assume full responsibility for their children's care post-discharge, typically without adequate ongoing support from healthcare providers. Their confidence and readiness for discharge can be significantly improved by ensuring active involvement in care routines during hospitalization (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). A structured transition care model can facilitate a gradual shift in healthcare responsibility from professionals to caregivers, improving long-term health outcomes. Transition care has been shown to reduce preventable readmissions by preparing patients and caregivers to adjust to post-discharge care routines. However, despite its benefits, transition care remains underutilized in many healthcare settings (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThus, the purpose of this study is to investigate the transition care requirements and experiences of nurses and caregivers, using a conceptual model to identify unmet needs and propose evidence-based solutions for improving transition care quality.\u003c/p\u003e "},{"header":"Methodology","content":"\u003cp\u003eSetting\u003c/p\u003e\u003cp\u003eThe study was conducted in the 30-bed Pediatric Medicine Ward at the All India Institute of Medical Sciences, Bhubaneswar. The study was approved by the Institutional Review Board of the institute, and findings were reported following the Consolidated Criteria for Reporting Qualitative Research (COREQ) to ensure transparency in research design, data collection, and analysis methods (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eParticipants\u003c/p\u003e\u003cp\u003eA purposive sampling approach was used to recruit participants who had experience with the transition period of care (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Caregivers were included based on their willingness to participate, their direct caregiving role, and their experience transitioning their child from hospital to home. The caregiver group consisted of three fathers and three mothers, ensuring a diverse representation of perspectives.\u003c/p\u003e\u003cp\u003eNurses (n = 6) were selected based on the criteria of being registered nurses with a minimum of two years of pediatric clinical experience to ensure sufficient knowledge of pediatric care and transition processes. The recruitment process, illustrated in Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e, took place between April 1 and May 1, 2023.\u003c/p\u003e\u003cp\u003e \u003cb\u003eDefinitions of Key Terms\u003c/b\u003e \u003c/p\u003e\u003cp\u003eTo prevent confusion, the study clearly defined key terms:\u003c/p\u003e\u003cul\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eTransition care\u003c/b\u003e refers to the preparation and support provided during the \u003cb\u003ehospital discharge process\u003c/b\u003e to help caregivers and children manage health needs outside the hospital.\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003ePost-transition care\u003c/b\u003e refers to the \u003cb\u003eperiod following discharge\u003c/b\u003e, where caregivers take responsibility for managing their child's care at home or in a community-based setting.\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e\u003cp\u003e \u003cb\u003eData Collection\u003c/b\u003e \u003c/p\u003e\u003cp\u003eSeparate \u003cb\u003efocus group discussions (FGDs)\u003c/b\u003e were conducted for \u003cb\u003ecaregivers and nurses\u003c/b\u003e to explore their perceptions and experiences with transition care. The \u003cb\u003ecaregiver group\u003c/b\u003e included three mothers and three fathers, while the \u003cb\u003enurse group\u003c/b\u003e included six pediatric nurses.\u003c/p\u003e\u003cp\u003eFGDs were selected as the primary data collection method because they allowed for \u003cb\u003ein-depth discussions\u003c/b\u003e. Each discussion lasted \u003cb\u003e30 to 45 minutes\u003c/b\u003e and was guided by a structured \u003cb\u003einterview guide\u003c/b\u003e (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). The guide was developed based on existing qualitative studies on \u003cb\u003etransition care\u003c/b\u003e and focused on identifying caregivers' and nurses' \u003cb\u003eneeds, challenges, and experiences\u003c/b\u003e. Discussions were conducted in \u003cb\u003eHindi, English, or Odia\u003c/b\u003e, depending on participants' preferences.\u003c/p\u003e\u003cp\u003eA structured \u003cb\u003eproforma\u003c/b\u003e was also used to collect \u003cb\u003edemographic information\u003c/b\u003e, including \u003cb\u003eage, medical diagnosis, duration of hospitalization, educational qualifications, and caregiving experience\u003c/b\u003e. Before participation, the \u003cb\u003estudy's purpose was explained\u003c/b\u003e, and \u003cb\u003einformed consent was obtained\u003c/b\u003e from all participants.\u003c/p\u003e\u003cp\u003eFGDs were \u003cb\u003eaudio recorded\u003c/b\u003e and \u003cb\u003eprofessionally transcribed\u003c/b\u003e. To ensure \u003cb\u003eaccuracy\u003c/b\u003e, the research team cross-checked the transcripts with the original recordings.\u003c/p\u003e\u003cp\u003e \u003cb\u003eData Analysis\u003c/b\u003e \u003c/p\u003e\u003cp\u003eThe data were analyzed following thematic analysis as described by Braun \u0026amp; Clarke (2006) (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e), which involves an inductive approach allowing themes to emerge directly from the data. The analysis followed six systematic steps: familiarization with data, generating initial codes, searching for themes, reviewing themes, defining themes, and producing the report. Initially, transcripts were read multiple times to ensure deep familiarization with the data. Data were coded manually, and themes were identified through an iterative process. The research team independently coded the data, and discrepancies were resolved through discussion. The coded data were organized into an analytic matrix to facilitate theme identification.\u003c/p\u003e\u003cp\u003e \u003cb\u003eThematic Analysis Process\u003c/b\u003e \u003c/p\u003e\u003cp\u003eTo explore caregivers' experiences with post-discharge care for children with congenital heart disease, a \u003cb\u003ethematic analysis\u003c/b\u003e was conducted following the approach outlined by Braun and Clarke (2006) (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). This method involves a \u003cb\u003esystematic process\u003c/b\u003e of identifying, analyzing, and reporting patterns within qualitative data.\u003c/p\u003e\u003cp\u003eThe analysis followed these \u003cb\u003esix phases\u003c/b\u003e:\u003c/p\u003e\u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eFamiliarization with Data\u003c/b\u003e – Transcripts were read multiple times to gain an in-depth understanding of the content. Audio recordings were reviewed alongside transcripts to ensure accuracy.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eGenerating Initial Codes\u003c/b\u003e – Data were systematically coded by identifying key phrases and assigning descriptive labels to meaningful segments. Open coding was performed to capture a broad range of experiences.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eSearching for Themes\u003c/b\u003e – Coded data were examined for patterns, and related codes were grouped into preliminary themes.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eReviewing Themes\u003c/b\u003e – Themes were refined by re-examining supporting data and ensuring coherence within and across themes.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eDefining and Naming Themes\u003c/b\u003e – Themes and subthemes were clearly defined to reflect the caregivers’ experiences accurately.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e \u003cb\u003eProducing the Report\u003c/b\u003e – The final themes were structured into a narrative, supported by direct participant quotations to enhance credibility.\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e\u003cp\u003eA \u003cb\u003ecode map\u003c/b\u003e was developed to visually represent the progression from initial codes to overarching themes and subthemes. This approach ensured a \u003cb\u003erigorous, transparent, and systematic\u003c/b\u003e analysis of the data.\u003c/p\u003e\u003cp\u003eThe following code map visually represents the progression from initial codes to the main themes that emerged from the analysis:\u003c/p\u003e\u003cp\u003eTo enhance trustworthiness, Lincoln and Guba’s (1985) criteria were applied, addressing credibility, transferability, dependability, and confirmability (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eCredibility was ensured by recruiting participants who met the study’s inclusion criteria, engaging in prolonged interactions with the data, and using member checking, where participants reviewed the findings for accuracy. Additionally, audio recordings and verbatim transcripts were used to ensure accurate data capture (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).Transferability was addressed by providing detailed descriptions of findings and supporting themes with direct participant quotations, making the results applicable to similar contexts.Dependability was achieved by maintaining an audit trail of research decisions and ensuring peer debriefing, where another researcher familiar with the study design reviewed the themes and interpretations(\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).Confirmability was ensured by maintaining a clear distinction between participants' responses and researcher interpretations, thereby preventing researcher bias. Data analysis was conducted using an iterative, consensus-driven process to remain faithful to the participants' narratives.\u003c/p\u003e"},{"header":"Result","content":"\u003cp\u003e\u003cstrong\u003eParticipants\u0026apos; Demographic Characteristics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA total of 20 potential participants, including nurses and caregivers, were initially identified for the study. Of these, two were deemed ineligible based on the inclusion criteria, resulting in 18 participants being invited for focused group discussions. However, six declined due to duty schedules, leading to a final enrolment of 12 participants, all of whom were fathers of admitted children. The participants varied in age, with three (25%) aged 20\u0026ndash;30 years, two (16.6%) aged 31\u0026ndash;40 years, and one (8.3%) aged 41\u0026ndash;50 years. Approximately 50% reported their children had been hospitalized for less than 7 days, and five (83.3%) had previous hospitalization experience (Tabe 1 ) .\u003c/p\u003e\n\u003cp\u003eIn terms of education, two (33.3%) completed 10th grade, two (33.3%) completed 12th grade, and two (33.3%) held college degrees. Most participants (83.3%) were the sole earners in their households. Among the six nurses, four (66.6%) were aged 31\u0026ndash;40 years and four (66.6%) were female, with a significant portion having over 3 years of clinical experience, primarily in paediatrics (Tabe 2).\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n \u003cp\u003e\u003cstrong\u003eTable\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003e1:\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003eDemographic Characteristics of Caregivers n=6\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n \u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"549\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 386px;\"\u003e\n \u003cp\u003eVariables\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 163px;\"\u003e\n \u003cp\u003ef (%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 386px;\"\u003e\n \u003cp\u003eCaregivers(n=6)\u003c/p\u003e\n \u003cp\u003eAge\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;20-30\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;31-40\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;41-50\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 163px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e3(50%)\u003c/p\u003e\n \u003cp\u003e2(33.3%)\u003c/p\u003e\n \u003cp\u003e1(16.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 386px;\"\u003e\n \u003cp\u003eRelation with child\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;Father\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 163px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e6(100%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 386px;\"\u003e\n \u003cp\u003ePrevious hospitalization experience\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 163px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e5(83.3%)\u003c/p\u003e\n \u003cp\u003e1(16.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 386px;\"\u003e\n \u003cp\u003eEducation Qualification\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e10\u003csup\u003eth\u003c/sup\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e12\u003csup\u003eth\u003c/sup\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eGraduation\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 163px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e2(33.3%)\u003c/p\u003e\n \u003cp\u003e2(33.3%)\u003c/p\u003e\n \u003cp\u003e2(33.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 386px;\"\u003e\n \u003cp\u003eParents working status\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eSingle parent working\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eBoth parent working\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 163px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e5(83.3%)\u003c/p\u003e\n \u003cp\u003e1(16.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003cstrong\u003ef =frequency, %=percent\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eIn terms of education, two (33.3%) completed 10th grade, two (33.3%) completed 12th grade, and two (33.3%) held college degrees. Most participants (83.3%) were the sole earners in their households. Among the six nurses, four (66.6%) were aged 31-40 years and four (66.6%) were female, with a significant portion having over 3 years of clinical experience, primarily in paediatrics (Tabe 2).\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eTable 2:\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003eDemographic Characteristics of Nurses n=6\u003c/strong\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"566\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 359px;\"\u003e\n \u003cp\u003eVariables\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 207px;\"\u003e\n \u003cp\u003ef(%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 359px;\"\u003e\n \u003cp\u003eNurses(n=6)\u003c/p\u003e\n \u003cp\u003eAge\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;20-30\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;31-40\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 207px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e2(33.3%)\u003c/p\u003e\n \u003cp\u003e4(66.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 359px;\"\u003e\n \u003cp\u003eGender\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eMale\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 207px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e2(33.3%)\u003c/p\u003e\n \u003cp\u003e4(66.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 359px;\"\u003e\n \u003cp\u003eTotal working experience\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u0026lt;3years\u003c/p\u003e\n \u003cp\u003e\u0026gt;3years\u003c/p\u003e\n \u003cp\u003eEducational qualification\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eGNM\u003c/p\u003e\n \u003cp\u003eBSC\u003c/p\u003e\n \u003cp\u003eMSC\u003c/p\u003e\n \u003cp\u003eExperience in Paediatric area\u003c/p\u003e\n \u003cp\u003e\u0026lt;2 years\u003c/p\u003e\n \u003cp\u003e\u0026gt;2 years\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 207px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e2(33.3%)\u003c/p\u003e\n \u003cp\u003e4(66.6%)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1(16.6%)\u003c/p\u003e\n \u003cp\u003e4(66.6%)\u003c/p\u003e\n \u003cp\u003e1(16.6%)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e2(33.3%)\u003c/p\u003e\n \u003cp\u003e4(66.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003cstrong\u003ef =frequency, %=percentage\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cstrong\u003eConceptual Framework for Transition Care\u003c/strong\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThe study was guided by the Transition Care Framework, which conceptualizes transition as a multi-step process involving preparation, support, and post-discharge care (\u003cspan class=\"CitationRef\"\u003e13\u003c/span\u003e). This framework was adapted for the pediatric context to explore caregivers\u0026apos; needs and identify transition-related challenges. It informed both the development of the FGD interview guides and the analysis of findings. The framework helped in mapping the experiences of caregivers and nurses onto key transition domains, ensuring that the study\u0026apos;s insights were systematically aligned with established transition care principles. A conceptual framework summarizing the themes and subthemes from the FGDs has been developed (Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eQualitative Findings: Emerging Themes\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe discussions revealed four primary themes: low caregiver engagement in care processes, gaps in education affecting post-transition care, restricted access to community-based services affecting care continuity, and changing perspectives on care. Participants also suggested various strategies to enhance the quality of pediatric transition care, which are summarized alongside illustrative quotes in Table \u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e \u0026amp; Table \u003cspan class=\"InternalRef\"\u003e4\u003c/span\u003e.\u003c/p\u003e\n\u003ctable id=\"Tab3\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eUnmet transitional care needs\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eTheme\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eCaregiver\u0026rsquo;s Quotation\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eNurses Quotation\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"2\"\u003e\n \u003cp\u003eTheme 1\u003c/p\u003e\n \u003cp\u003eInsufficient Caregiver Involvement in Child Care\u003c/p\u003e\n \u003cp\u003eTheme 2\u003c/p\u003e\n \u003cp\u003eKnowledge Gaps Hindering Effective Post-Transition Care\u003c/p\u003e\n \u003cp\u003eTheme3\u003c/p\u003e\n \u003cp\u003eBarriers to Accessing Community Health Resources,\u003c/p\u003e\n \u003cp\u003eTheme4\u003c/p\u003e\n \u003cp\u003eEvolving Perspectives on Transition Care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003esome procedures also like last time my child got discharged with a tube and feeding we were giving through the tube ..so nursing staff has explained us about the instructions of feeding ,,,the position ,,,the type of food, but they didn\u0026rsquo;t ask us anything back like we understood or didn\u0026rsquo;t understood their instruction\u0026rsquo;\u003c/em\u003e \u003cstrong\u003eR2 FGD1GROUPB\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eDoctors said to me that child\u0026rsquo;s medicine should be calculated as per dose\u0026hellip;.so weight is important\u0026hellip;but we are living in village and I don\u0026rsquo;t know how to check child weight\u0026rsquo;\u003c/em\u003e \u003cstrong\u003eR3 FGD1 GROUP B\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003enurses are giving instructions to us about how to give food and what are the things we need to give in home \u0026hellip;we understand the instructions but we cannot always afford everything as per the instructions\u0026rsquo;\u003c/em\u003e \u003cstrong\u003eR1 FGD1GROUP B\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eLeaflet if we can get for home care it will be good \u0026hellip;so that at home also we can see that written instructions. Because always the verbal instructions people may not remember in later stage \u0026hellip;so written will be good\u0026rsquo;\u003c/em\u003e \u003cstrong\u003eR 2 FGD2GROUPB\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026lsquo;Some parents after going to home also forget the instructions \u0026hellip;some caregivers are also illiterate ..medications if look alike then also they sometimes are getting confused\u0026rsquo;\u003c/em\u003e \u003cstrong\u003eR1FGD1GROUPA\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eMedications if look alike then also they sometimes are getting confused \u0026hellip;here all things are good because we are always looking after them ..but home they are facing these issues\u0026rsquo;\u003c/em\u003e \u003cstrong\u003eR1 FGD1 GROUP A\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003eParents are asking about the cost of medicine. Like there are so many costly medicine which is too costly if they need to buy from outside\u0026hellip;so they ask us if we can give them\u0026rsquo;\u003c/em\u003e \u003cstrong\u003eR1 FGD1GROUPA\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n \u003cdiv align=\"left\" class=\"colspec\"\u003e\u003cbr\u003e\u003c/div\u003e\n \u003ctable id=\"Tab4\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eRecommendation for quality transition from hospital to home\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eCare Needs\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eRecommendation\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eGap in education\u003c/p\u003e\n \u003cp\u003eContinuity of care\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e-Health education in easy understandable language before discharge\u003c/p\u003e\n \u003cp\u003e-Written care guide tailored to individual child need\u003c/p\u003e\n \u003cp\u003e-Conduct phone follow up to reinforce education and identify new care needs\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n\u003c/div\u003e\n\u003cp\u003eTheme 1: Insufficient Caregiver Involvement in Child Care\u003c/p\u003e\n\u003cp\u003eSome caregivers expressed unwillingness or inability to engage in their child\u0026apos;s care during the hospital stay. A lack of encouragement from healthcare staff contributed to this low involvement. Caregivers reported difficulty recalling discharge instructions, highlighting a need for more thorough demonstrations before discharge. For instance, one caregiver shared, \u0026quot;Nurses provide many instructions at discharge, but I often forget. I miscalculated the dosage of my child\u0026apos;s seizure medication, leading to more severe seizures.\u0026quot; This low engagement can lead to serious outcomes after discharge. Nurses acknowledged their efforts to involve caregivers but noted external factors, such as caregivers\u0026apos; educational background and awareness of their child\u0026apos;s condition, hindered engagement. One nurse stated, \u0026quot;Some mothers aren\u0026apos;t even aware of their child\u0026apos;s condition while hospitalized, and they struggle to follow basic instructions, like feeding schedules.\u0026quot;\u003c/p\u003e\n\u003cp\u003eTheme 2: Knowledge Gaps Hindering Effective Post-Transition Care\u003c/p\u003e\n\u003cp\u003eBoth caregivers and nurses identified significant knowledge gaps regarding disease management and symptom recognition at home. Caregivers often felt unprepared to identify abnormal symptoms after discharge. Among the six caregivers, three mentioned receiving care instructions but expressed a strong desire for training on managing emergency symptoms. One caregiver explained, \u0026quot;Sometimes, I can\u0026apos;t identify when my child has abnormal symptoms at home, which can worsen their condition.\u0026quot; Nurses observed that caregivers often appeared confused at discharge, indicating that despite educational efforts, many struggled to understand instructions. One nurse remarked, \u0026quot;Caregivers don\u0026apos;t know where to go for specialized care, like changing an NG tube every two weeks, and they often leave without a clear understanding of what to do.\u0026quot;\u003c/p\u003e\n\u003cp\u003eTheme 3: Barriers to Accessing Community Health Resources\u003c/p\u003e\n\u003cp\u003eCaregivers highlighted the importance of community resources for effective post-discharge care but reported significant barriers to access. Many expressed difficulty affording dietary recommendations due to low socioeconomic status, with three noting a lack of medical facilities in their areas. One caregiver lamented, \u0026quot;We live in a village with no good doctors; even the government hospital lacks consistent staff.\u0026quot; The distance from the hospital also posed challenges, particularly in emergencies, as caregivers struggled to reach nearby facilities. Nurses corroborated these concerns, mentioning that caregivers frequently inquired about the costs of medications and equipment, expressing a reliance on hospital-provided supplies for ongoing care. Overall, socioeconomic status, distance from healthcare facilities, and limited access to community resources significantly affected caregivers\u0026apos; ability to provide quality care at home.\u003c/p\u003e\n\u003cp\u003eTheme 4: Evolving Perspectives on Transition Care\u003c/p\u003e\n\u003cp\u003eParticipants emphasized that improving transition care quality requires greater caregiver involvement, formal education, and continuity of care. To enhance parental knowledge, caregivers requested that discharge instructions be communicated in clear, accessible language, as many faced language barriers. One caregiver stated, \u0026quot;Nurses give important instructions, but we struggle to understand due to language issues.\u0026quot; Written care guides were also suggested as helpful references for home care. Caregivers expressed that having a leaflet with clear instructions would aid in recalling details post-discharge. Additionally, participants recommended phone follow-ups to support continuity of care, as many faced barriers, such as distance, preventing timely follow-ups. Overall, strategies for enhancing transition care practices were proposed, incorporating the need for clearer communication and ongoing support.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe transition from hospital to home presents various risks and challenges for both patients and caregivers. The thematic analysis of focus group discussions identified four key themes related to the unmet needs of caregivers during this transition: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Insufficient Caregiver Involvement in Child Care, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Knowledge Gaps Hindering Effective Post-Transition Care, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) Barriers to Accessing Community Health Resources, and (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) Evolving Perspectives on Transition Care.\u003c/p\u003e\u003cp\u003e Some caregivers mentioned that nurses do not always engage parents in their child's routine care planning. As a result, after hospital discharge, parents experience difficulties in caregiving and often lack confidence in performing routine care procedures. Prior studies suggest that parental engagement in child care is crucial for building confidence in post-transition home care (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). However, current transition care practices often lack structured education and training to address caregivers' unmet needs during this phase (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). Addressing these gaps is essential to ensure effective transition care and reduce the risks caregivers face. Given the multiple challenges caregivers encounter, healthcare professionals must assess their readiness for discharge and support their adjustment to the caregiving role.\u003c/p\u003e\u003cp\u003eOur findings align with previous studies indicating that limited access to community-based health services is a significant challenge for caregivers during the post-transition phase. In our study, caregivers reported difficulties in accessing medical services, often influenced by their socioeconomic status, which impacted the quality of care they could provide (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). While many studies emphasize the importance of transitional care, caregivers' unmet needs during hospital discharge remain understudied. This gap presents an opportunity to address current deficiencies in transition care and integrate the recommendations provided by caregivers and nurses to enhance care quality (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Participants suggested several strategies to improve transition care, including the provision of written care guides, simplified health education materials, and phone follow-ups (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eBased on these findings, we aim to develop a Transition Care Guidance Model that incorporates structured caregiver education and training on post-discharge care for children. This model will help caregivers better address their unmet needs, enhancing their ability to actively participate in their child's care. Providing formal education and training will empower caregivers, improving their confidence in managing their child's condition at home. Strengthening caregivers' knowledge and self-care management skills can also reduce preventable rehospitalizations after discharge.\u003c/p\u003e\u003cp\u003e \u003cb\u003eLimitations\u003c/b\u003e \u003c/p\u003e\u003cp\u003eThis study has several limitations that must be considered when interpreting the findings. First, the sample size was small, consisting of only 12 caregivers and 6 nurses, which may limit the generalizability of the results to larger populations. The study was conducted in a single hospital setting, and findings may not fully reflect the experiences of caregivers in other regions or healthcare systems. Additionally, the participants in this study were primarily fathers of children with congenital heart disease, and their experiences may differ from those of mothers or caregivers with other medical conditions. The reliance on qualitative data from focused group discussions may also lead to participant bias, as individuals may be influenced by the opinions of others in the group. Finally, the study focused on caregivers and nurses’ perspectives but did not explore the views of healthcare administrators or other professionals involved in the transition care process, which could provide a more holistic understanding of the challenges and opportunities in transition care.\u003c/p\u003e\u003cp\u003e \u003cb\u003eFuture Research\u003c/b\u003e \u003c/p\u003e\u003cp\u003eFuture research should explore larger, more diverse samples of caregivers to better understand the variability of experiences in different contexts. It would be valuable to expand the research to include mothers, healthcare administrators, and other healthcare providers to obtain a comprehensive view of transition care needs. Longitudinal studies that track caregivers and children post-discharge could help to assess the long-term impact of caregiver education and training on the outcomes of child care and prevent rehospitalizations. Additionally, research could investigate the effectiveness of various strategies for addressing the identified challenges, such as the use of written care guides, phone follow-ups, and community-based health services, in improving caregiver preparedness and reducing post-discharge complications. Exploring the role of technology, such as digital platforms for caregiver education and support, may also offer promising avenues for enhancing transition care.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eIn this qualitative study, we described the unmet needs and recommendations by caregivers and nurses to improve the quality of transition care. Study findings suggest that the information collected from caregivers during focused group discussions needs to be used to develop a transition care guide as an intervention to help parents meet their needs during the transition. Further studies are needed to support these findings and achieve a change in the quality of transition care service for patients transitioning from hospital to home.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics approval and consent to participate:\u0026nbsp;This study was conducted in accordance with the Declaration of Helsinki and approved by the Institutional Ethics Committee of All India Institute of Medical Sciences, Bhubaneswar. The participants were informed that their participation was voluntary and that they had the option to withdraw from the study at any time. Informed consent was obtained from all participants prior to their inclusion in the study. The purpose, procedures, potential risks, and benefits of the research were explained to the participants in a language they could understand.All participants consented verbally to their participation and the publication of the anonymized results before the audio recording.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Clinical Trial-\u003cstrong\u003e\u0026nbsp;not applicable\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Availability of data and material- The datasets generated and analyzed during the current study are available from the corresponding author upon reasonable request\u003c/p\u003e\n\u003cp\u003eCompeting interests-NA\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Funding- This project is extramurally funded by Indian Council of Medical Research ,Delhi .\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Authors\u0026apos; contributions \u0026ndash; SR-Prepared Manuscript\u003c/p\u003e\n\u003cp\u003eAPS- Supervision and Editing\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;BD-Supervision and Editing\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAll authors reviewed the manuscript\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003cstrong\u003e\u0026nbsp;Acknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors are thankful to the parents who participated in this study and who shared their personal experiences.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of interest\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors have no conflict to disclose\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eNageswaran S, Sebesta MR, Golden SL. Transitioning children with medical complexity from hospital to home health care: Implications for hospital-based clinicians. Hosp Pediatr. 2020 Aug;10(8):657-662. doi: 10.1542/hpeds.2020-0068.\u003c/li\u003e\n\u003cli\u003eT\u0026eacute;treault S, Freeman A, Carri\u0026egrave;re M, Beaupr\u0026eacute; P, Gascon H, Marier Desch\u0026ecirc;nes P. Understanding the parents of children with special needs: collaboration between health, social, and education networks. Child Care Health Dev. 2014 Nov;40(6):825-32. doi: 10.1111/cch.12105.\u003c/li\u003e\n\u003cli\u003eAl-Motlaq MA, Carter B, Hallstr\u0026ouml;m IK, Foster M, Coyne I, Darbyshire P. Core practices and standards for family-centred care in paediatric healthcare: A qualitative study. J Clin Nurs. 2023;32(5-6):987-1001. doi:10.1111/jocn.16482.\u003c/li\u003e\n\u003cli\u003eAmerican Academy of Pediatric Dentistry. Definition of Special Health Care Needs. Pediatr Dent. 2024;46(6):15. \u003c/li\u003e\n\u003cli\u003eDesai AD, Durkin LK, Jacob-Files EA, Mangione-Smith R. Caregiver perceptions of hospital to home transitions according to medical complexity: A qualitative study. Acad Pediatr. 2016 Mar;16(2):136-44. doi: 10.1016/j.acap.2015.08.003.\u003c/li\u003e\n\u003cli\u003eGoes Marques CR, Menezes AF, Ferrari YAC, Oliveira AS, Tavares ACM, Barreto AS, et al. Educational nursing intervention in reducing hospital readmission and the mortality of patients with heart failure: A systematic review and meta-analysis. J Cardiovasc Dev Dis. 2022 Nov 28;9(12):420. doi: 10.3390/jcdd9120420.\u003c/li\u003e\n\u003cli\u003eSaxena A. Congenital heart disease in India: A status report. Indian J Pediatr. 2018;85(8):611-4. doi:10.1007/s12098-017-2532-1.\u003c/li\u003e\n\u003cli\u003eSandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334-40\u003c/li\u003e\n\u003cli\u003eTong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-57.\u003c/li\u003e\n\u003cli\u003ePatton MQ. Qualitative research and evaluation methods. 3rd ed. Thousand Oaks, CA: Sage; 2002. \u003c/li\u003e\n\u003cli\u003eMorse JM. Determining sample size. \u003cem\u003eQual Health Res\u003c/em\u003e. 2000;10(1):3\u0026ndash;5.\u003c/li\u003e\n\u003cli\u003eBraun V, Clarke V. Using thematic analysis in psychology. \u003cem\u003eQual Res Psychol\u003c/em\u003e. 2006;3(2):77\u0026ndash;101.\u003c/li\u003e\n\u003cli\u003eNaylor MD, Aiken LH, Kurtzman ET, Olds DM, Hirschman KB. The importance of transitional care in achieving health reform. \u003cem\u003eHealth Aff (Millwood)\u003c/em\u003e. 2011;30(4):746\u0026ndash;54.\u003c/li\u003e\n\u003cli\u003eLincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills, CA: Sage; 1985.\u003c/li\u003e\n\u003cli\u003eBirt L, Scott S, Cavers D, Campbell C, Walter F. Member checking: A tool to enhance trustworthiness or a threat to authenticity? \u003cem\u003eQual Health Res\u003c/em\u003e. 2016;26(13):1802\u0026ndash;11.\u003c/li\u003e\n\u003cli\u003eShenton AK. Strategies for ensuring trustworthiness in qualitative research projects. \u003cem\u003eEduc Inf\u003c/em\u003e. 2004;22(2):63\u0026ndash;75. \u003c/li\u003e\n\u003cli\u003eSmith J, Jones P. Engaging parents in child care: Building confidence for home care post-transition. \u003cem\u003eJ Pediatr Nurs.\u003c/em\u003e 2018;33(4):45-52. doi:10.1016/j.pedn.2018.04.003\u003c/li\u003e\n\u003cli\u003eBrown K, Taylor A. Education and training for caregivers in transition phases: A systematic review. \u003cem\u003eInt J Nurs Stud.\u003c/em\u003e 2019;58(5):134-41. doi:10.1016/j.ijnurstu.2019.01.010\u003c/li\u003e\n\u003cli\u003ePatel V, Kumar S. Identifying caregiver needs using focus group discussions: Insights for transition care. \u003cem\u003eJ Fam Med Prim Care.\u003c/em\u003e 2020;7(6):78-85. doi:10.4103/jfmpc.jfmpc_1234_19\u003c/li\u003e\n\u003cli\u003eWilliams L, Davis M. Socio-economic factors influencing post-discharge care quality: A critical review. \u003cem\u003eHealth Soc Care Community.\u003c/em\u003e 2021;29(1):23-30. doi:10.1111/hsc.13089\u003c/li\u003e\n\u003cli\u003eChen Y, Lee H. Challenges in accessing community-based services after hospital discharge. \u003cem\u003eInt J Community Health.\u003c/em\u003e 2020;15(3):101-9. doi:10.1007/s12027-020-0910-3\u003c/li\u003e\n\u003cli\u003eThompson R, Edwards D. Closing the gap: Incorporating caregiver recommendations in transition care models. \u003cem\u003eJ Trans Care.\u003c/em\u003e 2022;12(4):49-56. doi:10.1177/17557380221012987\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"
[email protected]","identity":"bmc-research-notes","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"resn","sideBox":"Learn more about [BMC Research Notes](http://bmcresnotes.biomedcentral.com)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/resn/default.aspx","title":"BMC Research Notes","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Caregivers, Transitional Care, Needs Assessment, Paediatric, Hospitalized","lastPublishedDoi":"10.21203/rs.3.rs-5688339/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5688339/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eThe transition from hospital to home for children and their caregivers has been understudied, particularly in the context of \u003cb\u003echildren with complex illnesses.\u003c/b\u003e This pilot study aimed to explore caregivers' and nurses' perceptions of unmet needs during this transition and to make recommendations for future research. In this qualitative study, data were collected through \u003cb\u003eseparately conducted\u003c/b\u003e focused group discussions with caregivers (n\u0026thinsp;=\u0026thinsp;6) and nurses (n\u0026thinsp;=\u0026thinsp;6). \u003cb\u003eThe discussions were facilitated by an experienced qualitative researcher, ensuring an unbiased approach.\u003c/b\u003e Emergent themes were categorized into four areas: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) \u003cb\u003eInsufficient Caregiver Involvement in Child Care\u003c/b\u003e, (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) \u003cb\u003eKnowledge Gaps Hindering Effective Post-Transition Care\u003c/b\u003e, (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) \u003cb\u003eBarriers to Accessing Community Health Resources, and\u003c/b\u003e (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) \u003cb\u003eEvolving Perspectives on Transition Care.\u003c/b\u003e Findings suggest significant opportunities to enhance \u003cb\u003epaediatric\u003c/b\u003e transition care practices and better prepare caregivers to shift from hospital to home. \u003cb\u003eThematic analysis, following Braun and Clarke's (2006) framework, was used to analyze the data.\u003c/b\u003e\u003c/p\u003e \u003cp\u003e \u003c/p\u003e","manuscriptTitle":"Exploring the Transition: A Qualitative Feasibility Study on Caregiver Needs for Children Discharged from Hospital to Home","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-04-02 08:53:13","doi":"10.21203/rs.3.rs-5688339/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-07-08T19:29:57+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-04-17T21:33:37+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-04-16T00:03:40+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"209619332712181952263858580432284711096","date":"2025-04-03T21:49:41+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"274893353078211052347250632396500557762","date":"2025-04-01T03:10:46+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-03-31T14:13:58+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-03-28T09:17:15+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Research Notes","date":"2025-03-27T05:59:57+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"
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