Piloting a structured developmental tool to assess transition readiness for youth with special health-care needs: A mixed-methods exploration of health-care provider experiences

Bond, Judy; Shanske, Susan; Hoffman, Roberta; Ross, Abigail M.

doi:10.1177/1367493518823899

Cited by 7 publications

(4 citation statements)

References 26 publications

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“…Furthermore, results of another study indicated that the transition competence score was associated with psychosocial maturity and age, but the effects were weak (Moynihan et al, 2015). Measurements to assess transition readiness are considered to be an underdeveloped area (Schwartz et al, 2014), as the constructs can only be assessed with a small number of instruments (e.g., TRAQ, Transition‐Q or TRxANSITION) (Schwartz et al, 2014), but there are activities directed to develop new instruments for use in health care settings (Bond et al, 2020) and standardized the assessment of transition and transfer, even for specific chronic conditions (e.g., diabetes type 1; Al Khalifah et al, 2022). In literature, most of the studies of transition agreed that the construct readiness or maturity should be preferred over the chronological age of the AYAs to determine the start of the transfer process into adult care (Yassaee et al, 2019).…”

Section: Discussionmentioning

confidence: 99%

Transition competence as an indicator of health outcomes related to transition

Markwart

Schmidt

Thyen

et al. 2023

Child

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BackgroundAdolescents and young adults (AYAs) with chronic conditions face a transfer, defined as an actual shift from paediatric to adult‐oriented health care. Transition competence as the self‐perceived knowledge, skills and abilities regarding the transition process was considered extremely useful.AimThis study was designed to investigate the impact of transition competence before and after the transfer on disease‐specific quality of life (QoL) and health care satisfaction of AYAs with diabetes.ResultsIn total, a sample of N = 90 AYAs with diabetes self‐reported their transition competence, diabetes‐specific QoL and satisfaction with care. Multiple linear regressions were used to analyse the impact of transition competence on satisfaction with care and QoL. Transition competence positively influenced the outcomes of satisfaction with care and QoL.ConclusionYoung adults with diabetes showed higher transition competence scores than adolescents with diabetes.

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Section: Discussionmentioning

confidence: 99%

Transition competence as an indicator of health outcomes related to transition

Markwart

Schmidt

Thyen

et al. 2023

Child

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“…The tool does not rely on the ability of a health care organization to integrate the tool into their system; it can be implemented within an organization or external to an organization. Although integration within the systems of care is ideal [ 50 ], in other studies of educational transition tools, health care providers expressed concern over the ability to integrate tools, given the characteristics and deficits of health care systems [ 51 ].…”

Section: Discussionmentioning

confidence: 99%

A Provider-Facing eHealth Tool for Transitioning Youth With Special Health Care Needs From Pediatric to Adult Care: Mixed Methods, User-Engaged Usability Study

et al. 2021

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Background There is a need for medical education on health care transitions for youth with special health care needs. The Texas Transition Toolkit (the tool) supports providers through a one-stop shop for researching literature on care transitions, a catalog of care transition tools, and guides for developing care transition programs. Objective This study aims to assess the functionality and usability of the tool with providers working with transition-aged children and youth with special health care needs (representative users). Methods The tool was evaluated using a triangulated mixed methods case study approach consisting of a concurrent think-aloud phase, a satisfaction survey, and a survey of problem relevance and task performance to operationalize and capture functionality and usability. Our mixed methods deep dive into the functionality and usability of the tool focused on 10 representative users from one medical home in Texas and 5 website design experts. Results Representative users found the tool to be highly relevant, as demonstrated by the satisfaction score for relevance (138/150, 92%). According to the users, the tool provided comprehensive information related to health care transitions for youth with special health care needs, with a satisfaction score of 87.3% (131/150) for comprehensive. Overall satisfaction with the tool was high at 81.92% (1065/1300) with a cutoff score of 73.33% (953.4/1300) indicating high satisfaction, but users reported relatively lower satisfaction with search (114/150, 76%) and navigation (ease of use: 114/150, 76%; hyperlinks: 163/200, 81.5%; structure: 159/200, 79.5%). They experienced search- and navigation-related problems (total problems detected: 21/31, 68%) and, based on quality checks, had a relatively low task completion rate for tasks involving finding information (60/80, 75%), which required searching and navigation. The problems identified around search and navigation functionality were relevant (relevance scores ranging from 14.5 to 22, with a cutoff score of 11.7 indicating relevance). Conclusions The tool may help bridge the gaps in training on health care transitions for youth with special health care needs in US medical education. The tool can be used to create structured protocols to help improve provider knowledge, collaboration across pediatric and adult care providers, and the continuity of care as youth with special health care needs transition from pediatric to adult care. The results provided a road map for optimizing the tool and highlighted the importance of evaluating eHealth technologies with representative users.

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“…2,6,7 Research specifically assessing how to support children as they advance through the transition process of independently performing CIC is limited, though there is some evidence in patients with congenital urologic conditions and other pediatric medical conditions. 8,9 The aim of the current study is to understand the facilitators and challenges patients experience during their transition from caregiver-led CIC to patient-led self-CIC by gathering information through qualitative interviews of caregivers, adolescents, and young adults about their experiences. Our hope is this research will optimize this transfer of responsibility.…”

Section: Introductionmentioning

confidence: 99%

Facilitators and challenges to transitioning to self‐catheterization: Patient and caregiver perspectives

Hayes

Saunders

Choung

et al. 2023

Neurourology and Urodynamics

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Introduction Clean intermittent catheterization (CIC) is a well‐established method of managing lower urinary tract dysfunction. Depending on the age at introduction, caregivers might perform CIC initially but then transition responsibility to their children. Little is known about how to support families during this transition. Our aim is to learn the facilitators and challenges experienced when supporting the transition from caregiver‐led CIC to patient self‐CIC. Materials and Methods A phenomenological approach was used to gather information from caregivers and children >12 years through semistructured interviews. Thematic analysis was utilized to generate themes around experience with the transition from caregiver‐led CIC to patient self‐CIC. Results Of the 40 families interviewed, 25 families underwent successful transition to patient self‐CIC. Analysis of excerpts identified a three‐step process, including (1) desiring to learn self‐CIC, (2) practical learning of CIC techniques, and (3) mastering of techniques leading to emotional and physical independence. Many families experienced challenges in transitioning to self‐CIC, including patient or caregiver reluctance, improper equipment, past negative experiences, lack of knowledge about urinary tract anatomy and function, abnormal anatomy, and/or moderate to severe intellectual disability. Discussion Authors reviewed interventions to address challenges and provide clinical care recommendations to enhance success during the transition to patient self‐CIC. Conclusion No prior studies have identified this stepwise process that occurs in the transition from caregiver‐led CIC to patient self‐CIC. Healthcare providers and school officials (where indicated) can support families during this transition, with attention to facilitators and challenges identified in this study.

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Piloting a structured developmental tool to assess transition readiness for youth with special health-care needs: A mixed-methods exploration of health-care provider experiences

Cited by 7 publications

References 26 publications

Transition competence as an indicator of health outcomes related to transition

Transition competence as an indicator of health outcomes related to transition

A Provider-Facing eHealth Tool for Transitioning Youth With Special Health Care Needs From Pediatric to Adult Care: Mixed Methods, User-Engaged Usability Study

Facilitators and challenges to transitioning to self‐catheterization: Patient and caregiver perspectives

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