Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN)

Ranade-Kharkar, Pallavi; Weir, Charlene R.; Norlin, Chuck; Collins, Sarah A.; Scarton, Lou Ann; Baker, Gina B.; Borbolla, Damián; Taliercio, Vanina; Fiol, Guilherme Del

doi:10.1093/jamia/ocx023

Cited by 43 publications

(28 citation statements)

References 49 publications

(52 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Similarly, enhancing medical education and health literacy would also be beneficial during transition to independence and for the long-term CDM of teens [ 5 ]. The identified opportunities align well with Miller et al’s [ 25 ] findings regarding the technology preferences of young people in transition for access to health care and communication needs, and Ranade-Kharkar et al’s [ 26 ] information goal types among HCPs and caregivers for kids with special health needs.…”

Section: Discussionsupporting

confidence: 80%

Proposing an Ecosystem of Digital Health Solutions for Teens With Chronic Conditions Transitioning to Self-Management and Independence: Exploratory Qualitative Study

Sezgın

Weiler²,

Weiler³

et al. 2018

J Med Internet Res

View full text Add to dashboard Cite

BackgroundChronic disease management is critical to quality of life for both teen patients with chronic conditions and their caregivers. However, current literature is largely limited to a specific digital health tool, method, or approach to manage a specific disease. Guiding principles on how to use digital tools to support the transition to independence are rare. Considering the physiological, psychological, and environmental changes that teens experience, the issues surrounding the transition to independence are worth investigating to develop a deeper understanding to inform future strategies for digital interventions.ObjectiveThe purpose of this study was to inform the design of digital health solutions by systematically identifying common challenges among teens and caregivers living with chronic diseases.MethodsChronically ill teens (n=13) and their caregivers (n=13) were interviewed individually and together as a team. Verbal and projective techniques were used to examine teens’ and caregivers’ concerns in-depth. The recorded and transcribed responses were thematically analyzed to identify and organize the identified patterns.ResultsTeens and their caregivers identified 10 challenges and suggested technological solutions. Recognized needs for social support, access to medical education, symptom monitoring, access to health care providers, and medical supply management were the predominant issues. The envisioned ideal transition included a 5-component solution ecosystem in the transition to independence for teens.ConclusionsThis novel study systematically summarizes the challenges, barriers, and technological solutions for teens with chronic conditions and their caregivers as teens transition to independence. A new solution ecosystem based on the 10 identified challenges would guide the design of future implementations to test and validate the effectiveness of the proposed 5-component ecosystem.

show abstract

Section: Discussionsupporting

confidence: 80%

Proposing an Ecosystem of Digital Health Solutions for Teens With Chronic Conditions Transitioning to Self-Management and Independence: Exploratory Qualitative Study

Sezgın

Weiler²,

Weiler³

et al. 2018

J Med Internet Res

View full text Add to dashboard Cite

show abstract

“…The multidimensional care required to manage multiple condition-related needs [12,15,19,23,25,35,42,44,46,51,61,76,82,86,96,99,107,122,123,125,128,131,133,145,150], in the context of developmental, social, and psychological needs, emerged as a key feature of children's CCNs [46,54,61,63,71,149]. Heterogeneous combinations of high-intensity needs [25,33,40,42,45,51,54,76,79,96,98,99,103,128,131,145] spanned a wide range of care, including nutritional [1,10,11,21,25,32,69,76,…”

Section: Heterogeneous and Substantialmentioning

confidence: 99%

“…Nonetheless, it was apparent from the medical [1,2,10,40,45,48,51,54,56,66,73,79,89,103,115] and nursing literature [3,4,21,43,68,69,80,93,121,143] that those advances had also led to a growing pediatric population living with secondary conditions and/or disabilities with CCNs. Further, there was strong cross-disciplinary consensus that social and community service developments had not kept pace with medical progress [19,54,60,69,96,99,107,131,137,143]. This shortfall included training and workforce development for healthcare professionals whose job descriptions had rapidly evolved in a climate of advancement and cost containment [4,8,17,46,61,95,149].…”

Section: Medical Advancesmentioning

confidence: 99%

“…In particular, this pertains to issues of race[10, 55, 65,91], ethnicity[4, 10, 57, 73, 74, 80,102], geographical location[4, 16, 20, 34, 50,95,119,150], language[4, 16, 18, 28, 39, 41, 48, 57,87,150], and culture[1,4, 21, 39, 44, 46, 54, 57, 66,102,136]. The context of the family found in the literature pertained to the socio-economic status of the family[3, 4, 7, 18, 48, 66, 102, 103, 119, 150] and included reference to employment [80, 91], legal [57, 102], insurance [35, 73, 102], and health status [50, 65], as well as families' structures [18, 65, 117, 150], strengths [18, 30, 139, 142, 150], support systems [29, 66, 82, 107, 117, 119, 150], beliefs[1, 66,114,119,138], values[1, 46, 66], expectations [28,99,139], cohesion[7], and capacity for coping[7, 18, 20, 29, 48, 74-76, 102, 103, 107, 133, 139]. It was apparent that family context influenced the medium for care delivery and the opportunities for children with CCNs to live meaningful lives[68].…”

mentioning

confidence: 99%

See 1 more Smart Citation

Children’s complex care needs: a systematic concept analysis of multidisciplinary language

et al. 2018

View full text Add to dashboard Cite

Complex care in the arena of child health is a growing phenomenon. Although considerable research is taking place, there remains limited understanding and agreement on the concept of complex care needs (CCNs), with potential for ambiguity. We conducted a systematic concept analysis of the attributes, antecedents, and consequences of children's CCNs from a multidisciplinary perspective. Our data sources included PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. Inclusion criteria included publications in peer-reviewed journals between January 1990 and December 2017, written in the English language. One hundred and forty articles were included. We found that children's CCNs refer to multidimensional health and social care needs, in the presence of a recognized medical condition or where there is no unifying diagnosis.Conclusion: Children's CCNs are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. There remain extensive challenges to caring for these children and their families, precluding the possibility that any one profession can possess the requisite knowledge or scope to singularly provide high-quality competent care. What is Known: • Complex care is a growing phenomenon and population prevalence figures show that there is an increasing number of children with complex care needs (CCNs). However, the concept has not been systematically analyzed before, leaving it generally ill-defined and at times confusing. What is New: • This is the first time this concept has been systematically analyzed and this analysis provides a much-needed theoretical framework for understanding the multidimensional nature of CCNs in children. • Children's CCNs refer to multidimensional health and social care needs in the presence of a recognized medical condition or where there is no unifying diagnosis. They are individual and contextualized, are continuing and dynamic, and are present across a range of settings, impacted by family and healthcare structures. It is clear that the very nature of CCNs precludes the possibility that any one profession or discipline can possess the requisite knowledge or scope for high-quality competent care for this population.

show abstract

“…However, present information systems do not support nurse managers in the best possible way, because information is scattered and must be collected from different information sources and not all of the essential information is available. Information systems could better support nurse managers' decision‐making process if the essential information was defined and available at the moment of the decision‐making (Peltonen, Junttila, & Salanterä, ; Ranade‐Kharkar et al, ).…”

Section: Introductionmentioning

confidence: 99%

Identifying nurse managers' essential information needs in daily unit operation in perioperative settings

et al. 2020

View full text Add to dashboard Cite

Aim To identify nurse managers' essential information needs in daily unit operation in perioperative settings. Design Qualitative and quantitative descriptive design. Methods The study consisted of (I) generation of an item pool of potential information needs, (II) assessment of the item pool by an expert panel and (III) confirming the essential information needs of nurse managers in daily unit operation with a survey (N = 288). Content validity index values were calculated for the assessments by expert panel and in the survey. Internal consistency of the final item pool was explored with Cronbach's alpha. The data were collected from 2011–2015. Results During the study process, the number of essential information needs decreased from 92–41. The final item pool consisted of 12 subthemes, and they were categorized into four main themes: patient's care process, surgical procedure, human resources and tangible resources. The findings can be used to create a knowledge map for information system purposes.

show abstract

Information needs of physicians, care coordinators, and families to support care coordination of children and youth with special health care needs (CYSHCN)

Cited by 43 publications

References 49 publications

Proposing an Ecosystem of Digital Health Solutions for Teens With Chronic Conditions Transitioning to Self-Management and Independence: Exploratory Qualitative Study

Proposing an Ecosystem of Digital Health Solutions for Teens With Chronic Conditions Transitioning to Self-Management and Independence: Exploratory Qualitative Study

Children’s complex care needs: a systematic concept analysis of multidisciplinary language

Identifying nurse managers' essential information needs in daily unit operation in perioperative settings

Contact Info

Product

Resources

About