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Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity.

ABSTRACT: OBJECTIVES:Shared care plans play an essential role in coordinating care across health care providers and settings for children with medical complexity (CMC). However, existing care plans often lack shared ownership, are out-of-date, and lack universal accessibility. In this study, we aimed to establish requirements for shared care plans to meet the information needs of caregivers and providers and to mitigate current information barriers when caring for CMC. METHODS:We followed a user-centered design methodology and conducted in-depth semistructured interviews with caregivers and providers of CMC who receive care at a tertiary care children's hospital. We applied inductive, thematic analysis to identify salient themes. Analysis occurred concurrently with data collection; therefore, the interview guide was iteratively revised as new questions and themes emerged. RESULTS:Interviews were conducted with 17 caregivers and 22 providers. On the basis of participant perspectives, we identified 4 requirements for shared care plans that would help meet information needs and mitigate current information barriers when caring for CMC. These requirements included the following: (1) supporting the accessibility of care plans from multiple locations (eg, cloud-based) and from multiple devices, with alert and search features; (2) ensuring the organization is tailored to the specific user; (3) including collaborative functionality such as real-time, multiuser content management and secure messaging; and (4) storing care plans on a secure platform with caregiver-controlled permission settings. CONCLUSIONS:Although further studies are needed to understand the optimal design and implementation strategies, shared care plans that meet these specified requirements could mitigate perceived information barriers and improve care for CMC.

SUBMITTER: Desai AD

PROVIDER: S-EPMC6692073 | biostudies-literature | 2018 Jul

REPOSITORIES: biostudies-literature

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Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity.

Desai Arti D AD Jacob-Files Elizabeth A EA Wignall Julia J Wang Grace G Pratt Wanda W Mangione-Smith Rita R Britto Maria T MT

Hospital pediatrics 20180605 7

<h4>Objectives</h4>Shared care plans play an essential role in coordinating care across health care providers and settings for children with medical complexity (CMC). However, existing care plans often lack shared ownership, are out-of-date, and lack universal accessibility. In this study, we aimed to establish requirements for shared care plans to meet the information needs of caregivers and providers and to mitigate current information barriers when caring for CMC.<h4>Methods</h4>We followed a ...[more]

PMID: 29871887

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Project description:ImportanceAdvance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC.ObjectiveTo explore the experiences of bereaved family caregivers with ACP for CMC.Design, setting, and participantsThis qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used.ExposuresQualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached.Main outcomes and measuresTranscripts were analyzed to create themes that characterized caregiver experiences with ACP.ResultsA total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced.Conclusions and relevanceIn this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.

Project description:BackgroundChildren with medical complexity (CMC) are prone to medical errors and longer hospital stays, while residents do not feel prepared to provide adequate medical care for this vulnerable population. No educational guidance for the training of future pediatric tertiary care specialists outside their field of expertise involving the multidisciplinary care of CMC exists. We investigated pediatric residents past educational needs and challenges to identify key learning content for future training involving care for CMC.MethodsThis was a prospective mixed-methods study at a single pediatric tertiary care center. Qualitative semi-structured interviews with residents were conducted, submitted to thematic content analysis, linked to the American Board of Pediatrics (ABP) general pediatrics content outline, and analyzed with importance performance analysis (IPA). Quantitative validation was focused on key themes of pediatric nephrology within the scope of an online survey among pediatric residents and specialists.ResultsA total of 16 interviews, median duration 69 min [interquartile range IQR 35], were conducted. The 280 listed themes of the ABP general pediatrics content outline were reduced to 165 themes, with 86% (theoretical) knowledge, 12% practical skills, and 2% soft skills. IPA identified 23 knowledge themes to be of high importance where improvement is necessary and deemed fruitful. Quantitative validation among 84 residents and specialists (response rate 55%) of key themes in nephrology yielded high agreement among specialists in pediatric nephrology but low interrater agreement among trainees and "trained" non-nephrologists. The occurrence of themes in the qualitative interviews and their calculated importance in the quantitative survey were highly correlated (tau = 0.57, p = 0.001). Two clusters of high importance for other pediatric specialties emerged together with a contextual cluster of frequent encounters in both in- and outpatient care.ConclusionRegarding patient safety, this study revealed the heterogeneous aspects and the importance of training future pediatric tertiary care specialists outside their field of expertise involving the multidisciplinary care of CMC. Our results may lay the groundwork for future detailed analysis and development of training boot camps that might be able to aid the improvement of patient safety by decreasing preventable harm by medical errors, especially for vulnerable patient groups, such as CMC in tertiary care pediatrics.

Project description:Background: Deficits in quality of care for patients with heart failure (HF) contribute to high mortality in this population. This qualitative study aimed to understand the barriers and facilitators to high-quality HF care in Kerala, India. Methods: Semi-structured, in-depth interviews were conducted with a purposive sample of health care providers (n=13), patients and caregivers (n=14). Additionally, focus group discussions (n=3) were conducted with patients and their caregivers. All interviews and focus group discussions were transcribed verbatim. Textual data were analysed using thematic analysis. Results: Patients' motivation to change their lifestyle behaviours after HF diagnosis and active follow-up calls from health care providers to check on patients' health status were important enablers of high-quality care. Health care providers' advice on substance use often motivated patients to stop smoking and consuming alcohol. Although patients expected support from their family members, the level of caregiver support for patients varied, with some patients receiving strong support from caregivers and others receiving minimal support. Emotional stress and lack of structured care plans for patients hindered patients' self-management of their condition. Further, high patient loads often limited the time health care providers had to provide advice on self-management options. Nevertheless, the availability of experienced nursing staff to support patients improved care within health care facilities. Finally, initiation of guideline-directed medical therapy was perceived as complex by health care providers due to multiple coexisting chronic conditions in HF patients. Conclusions: Structured plans for self-management of HF and more time for patients and health care providers to interact during clinical visits may enable better clinical handover with patients and family members, and thereby improve adherence to self-care options. Quality improvement interventions should also address the stress and emotional concerns of HF patients.

Dataset Information

Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity.

Publications

Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity.

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