Need and Feasibility of a Transition Clinic for Adolescents with Chronic Illness: A Qualitative Study

Menon, Janaki; Peter, Anu Marie; Nayar, Lathika; Kannankulangara, Anugraha

doi:10.1007/s12098-020-03189-z

Cited by 8 publications

(5 citation statements)

References 14 publications

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“…A similar clinic structure could also be developed to target emerging adults in these years before they transition as part of a wider program of transition care, which is in keeping with current age recommendations [19]. Menon et al recently found that there is a need for some type of transition clinic for young adults with a chronic illness, including diabetes [20]. The question is how best to structure this type of clinic.…”

Section: Discussionmentioning

confidence: 99%

Improving the transitioning of pediatric patients with type 1 diabetes into adult care by initiating a dedicated single session transfer clinic

Williams

Newhook

Power

et al. 2020

Clin Diabetes Endocrinol

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Background: Young adults with type 1 diabetes face potential health problems and disruptions in accessing care related to their move from pediatrics into adult care. At a medium-sized pediatric hospital with no formal transition support program, we developed and evaluated the use of a single-session transfer clinic as an initial quality improvement intervention to improve patient satisfaction, clinic attendance, and knowledge of transition related issues. Methods: Following a jurisdictional scan of other diabetes programs, the pediatric diabetes program developed a half-day transfer clinic. After the first transfer clinic was held, evaluation surveys were completed by patients, parents, and healthcare providers. Based on the feedback received, we altered the structure and evaluated the revised clinic by surveying patients and parents. Results: All patients and parents who attended reported high levels of satisfaction with the clinic. Providers were also mostly positive regarding their participation. Feedback from the first clinic was used to modify the structure of the second clinic to better meet the needs of participants and to allow the clinic to run more efficiently. The use of group sessions and adapting resources developed by other diabetes programs were viewed favourably by participants and lessened the burden on staff who delivered the clinic. Conclusions: A half-day transfer clinic is a viable step towards improving patient and parent satisfaction during the transition into adult care without requiring additional staff or significant expenditures of new resources. This type of clinic can also be incorporated into a larger program of transition supports or be adopted by programs serving young adults with other chronic diseases.

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Section: Discussionmentioning

confidence: 99%

Improving the transitioning of pediatric patients with type 1 diabetes into adult care by initiating a dedicated single session transfer clinic

Williams

Newhook

Power

et al. 2020

Clin Diabetes Endocrinol

View full text Add to dashboard Cite

show abstract

“…findings. [ 20 ] Significant psychological issues in both children and their parents have been reported due to the increased financial burdens due to the loss of jobs, especially in pandemic situations. [ 21 ] A system to access the available government funding without delay would mitigate these caregivers’ distress, as Govindaraj et al .…”

Section: Discussionmentioning

confidence: 99%

Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis

Abdulla,

Pillai,

Ramachandran

2024

IJPC

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Objectives: Exploring data on primary caregiver experiences of dealing with chronically ill children (CIC) strengthens the ability of paediatricians to improve the quality of care by detecting unmet needs in paediatric palliative care and understanding their original concerns instead of presumed needs. Hence, this study aims to identify and describe the primary concerns and challenges faced by caregivers of children with complex chronic conditions in a tertiary care hospital in Kerala. Materials and Methods: Primary caregivers of 25 children aged <13 years with non-malignant life-limiting illnesses, admitted to the paediatric department of a government medical college in Kerala between 1 July 2021 and 28 February 2022, underwent in-depth interviews to analyse their most worrisome issues. Thematic analysis was the method chosen for qualitative data analysis. Results: The main themes identified were medical issues, unmet needs, caregiver health issues, and social and financial issues. Among the medical issues, poor seizure control and infected bedsores, sleep deprivation in both patient as well as caregivers, and difficulty in maintaining the personal hygiene of patients were the major issues. Parents of almost all the CICs reported that they required diapers more than any other material or device. Maternal depression was the major caregiver health issue. The unavailability of antiepileptic drugs in peripheral health centres resulted in missing doses and undue expenses for travel to tertiary centres to obtain the same. Caregivers reported their dismay when they finally realised that they were given false hopes of a cure by different systems of medicine. Conclusion: The challenges faced by caregivers of children with complex chronic conditions are multifaceted. Their most problematic issues related to medical issues are the occurrence of breakthrough seizures and development of infected bedsores. The most important material hardship reported was diaper needs. Caregiver issues such as sleep deprivation and maternal depression must be identified and addressed while providing comprehensive palliative care.

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“…The necessity for a formal HCT in India is obvious, despite the lack of comprehensive research on the topic, with the exception of a small pilot study by Menon et al . [ 22 ] on AYAs with chronic diseases, which reaffirmed the need for a transition clinic. Before anything else, it would be beneficial to undertake a nationwide survey to examine the current practices of transition and identify the gaps and challenges that are specific to our country.…”

Section: A Practical Approach To Hct In India: Implementing Hct In Indiamentioning

confidence: 94%

“…[ 20 ] Although there are a few studies on HCT in HIV patients and a small pilot study on children with chronic diseases, there are none on the transition of kidney care. [ 21 22 ] This is probably because HCT occurs informally with widely varying transition practices depending on the type of medical center, the volume of clinical load, and the level of interdepartmental coordination.…”

Section: Does India Have Hct Clinics For Kidney Diseases?mentioning

confidence: 99%

Transition of kidney care at 18: Challenges and practical solutions for India

Iyengar,

Girimaji,

Pais

2023

Indian J Nephrol

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Health-care transition (HCT) from pediatric-centered to adult-oriented health-care setting is more than a simple transfer of care. It is a carefully planned movement specially tailored for the needs of adolescents and young adults (AYAs). Similar to other chronic diseases, the need for HCT for AYAs with kidney disease has been well established by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA) consensus statements since 2011. However, successful HCT in India and other low- and middle-income countries (LMICs) has been limited. Undertaking the HCT program in India requires involvement of many stakeholders, that is, AYAs, parents/caregivers, health-care providers, and the health-care system. In this article, we discuss the need for HCT, the challenges faced during the transition, and the recommended models for HCT in kidney care. We focus on the unique challenges faced in India and conclude with practical suggestions to implement HCT in our setting.

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Need and Feasibility of a Transition Clinic for Adolescents with Chronic Illness: A Qualitative Study

Cited by 8 publications

References 14 publications

Improving the transitioning of pediatric patients with type 1 diabetes into adult care by initiating a dedicated single session transfer clinic

Improving the transitioning of pediatric patients with type 1 diabetes into adult care by initiating a dedicated single session transfer clinic

Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis

Transition of kidney care at 18: Challenges and practical solutions for India

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