scholarly journals Chronic Illness in Pediatric Critical Care

2021 ◽  
Vol 9 ◽  
Author(s):  
Sinead Murphy Salem ◽  
Robert J. Graham
Keyword(s):  
Chronic Illness ◽  
Pediatric Intensive Care ◽  
Models Of Care ◽  
Children With Medical Complexity ◽  
Medical Needs ◽  
Care Services ◽  
Healthcare Needs ◽  
Intercurrent Illness ◽  
Chronic Critical Illness ◽  
Acute Care Services

Children and Youth with Special Healthcare Needs (CYSHCN), children with medical complexity (CMC), and children with chronic, critical illness (CCI) represent pediatric populations with varying degrees of medical dependance and vulnerability. These populations are heterogeneous in underlying conditions, congenital and acquired, as well as intensity of baseline medical needs. In times of intercurrent illness or perioperative management, these patients often require acute care services in the pediatric intensive care (PICU) setting. This review describes epidemiologic trends in chronic illness in the PICU setting, differentiates these populations from those without significant baseline medical requirements, reviews models of care designed to address the intersection of acute and chronic illness, and posits considerations for future roles of PICU providers to optimize the care and outcomes of these children and their families.

scholarly journals Access and participation: What factors influence the provision and utilisation of health care services by children with learning disabilities?

2017 ◽  
Vol 41 (S1) ◽  
pp. S452-S452
Author(s):  
A. Rebowska
Keyword(s):  
Health Care ◽  
Learning Disabilities ◽  
Young People ◽  
Intellectual Disabilities ◽  
Health Care Services ◽  
Healthcare Services ◽  
Children And Young People ◽  
Care Services ◽  
Healthcare Needs ◽  
Wide Range

AimsThe aim of this literature review is to explore the range of factors that influence the degree of access to health care services by children and young people with learning disabilities.BackgroundChildren with learning disabilities are at increased risk of a wide range of health conditions comparing with their peers. However, recent reports by UK government as well as independent charities working with children and young people with learning disabilities demonstrated that they are at risk of poor health outcomes as a result of barriers preventing them from accessing most appropriate services.MethodsComprehensive searches were conducted in six databases. Articles were also obtained through review of references, a search of the grey literature, and contacting experts in the field. The inclusion criteria were for studies evaluating access to healthcare services, identification and communication of health needs, organisational aspects impacting on access and utilisation, staff attitudes where they impacted on access, barriers, discrimination in patients with intellectual disabilities age 0–18. The literature search identified a sample of 36 papers. The marked heterogeneity of studies excluded conducting a meta-analysis.ResultsBarriers to access included problems with identification of healthcare needs by carers and healthcare professionals, communication difficulties, the inadequacy of facilities, geographical and physical barriers, organisational factors such as inflexible appointment times, attitudes and poor knowledge base of healthcare staff.ConclusionThe factors identified can serve as a guide for managers and clinicians aiming to improve access to their healthcare services for children and young people with intellectual disabilities.Disclosure of interestThe authors have not supplied their declaration of competing interest.

The Role of the Primary Care Physician in the Care of Children with Serious Heart Disease

PEDIATRICS ◽  
1994 ◽  
Vol 94 (3) ◽  
pp. 284-290
Author(s):  
Paul C. Young ◽  
Yu Shyr ◽  
M. Anthony Schork
Keyword(s):  
Primary Care ◽  
Heart Disease ◽  
Chronic Illness ◽  
Medical Care ◽  
Primary Care Physician ◽  
Primary Care Physicians ◽  
Care Physician ◽  
Care Needs ◽  
Care Services ◽  
Primary Care Services

Objective. To determine the roles of primary care physicians and specialists in the medical care of children with serious heart disease. Setting. Pediatric Cardiology Division; Tertiary Care Children's Hospital. Subjects. Convenience sample of parents, primary care physicians, and pediatric cardiologists of 92 children with serious heart disease. Design. Questionnaire study; questionnaires based on 16 medical care needs, encompassing basic primary care services, care specific to the child's heart disease and general issues related to chronic illness. Results. All children had a primary care physician (PCP), and both they and the parents (P) reported high utilization of PCP for basic primary care services. However, there was little involvement of PCP in providing care for virtually any aspect of the child's heart disease. Parents expressed a low level of confidence in the ability of PCP in general or their child's own PCP to meet many of their child's medical care needs. Both PCP and pediatric cardiologists (PC) were significantly more likely than parents to see a role for PCP in providing for care specific to the heart disease as well as more general issues related to chronic illness. PC and PCP generally agreed about the role PCP should play, although PC saw a bigger role for PCP in providing advice about the child's activity than PCP themselves did. PC were less likely to see the PCP as able to follow the child for long term complications than PCP did. PC were more likely than PCP to believe that PCP were too busy or were inadequately reimbursed to care for children with serious heart disease. Only about one-third of parents reported discussing psychosocial, family, economic, or genetic issues with any provider, and PCP were rarely involved in these aspects of chronic illness. Conclusions. Primary care physicians do not take an active role in managing either the condition-specific or the more general aspects of this serious chronic childhood illness. With appropriate information and support from their specialist colleagues primary care physicians could provide much of the care for this group of children. Generalists and specialists are both responsible for educating and influencing parents about the role primary care physicians can play in caring for children with serious chronic illness.

120 The Experience of Housing Need Amongst Families Caring for Children with Medical Complexity: A Qualitative Study

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e85-e88
Author(s):  
Clara Moore ◽  
Kara Grace Hounsell ◽  
Arielle Zahavi ◽  
Danielle Arje ◽  
Natalie Weiser ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Future Research ◽  
Complex Care ◽  
Housing Situation ◽  
Children With Medical Complexity ◽  
Trade Off ◽  
Housing Preferences ◽  
Medical Needs ◽  
Medical Complexity ◽  
The Impact

Abstract Primary Subject area Complex Care Background Caregivers of children with medical complexity (CMC) face many financial, social and emotional stressors related to their child’s medical condition(s). Previous research has demonstrated that financial stress among this population can have an impact on their housing situation. Families of CMC may face other unique housing challenges such as disability accommodations in the home and housing space and layout. Objectives The primary aim of this study was to explore families’ perspectives and experiences of housing need, and its relationship to their child’s health status as it pertains to CMC. Design/Methods We conducted a qualitative study using semi-structured interviews to identify themes surrounding families of CMC’s experiences of housing need. Parents of CMC were recruited through purposive sampling from the Complex Care Program at a tertiary pediatric health sciences centre. Recruitment ceased when thematic saturation was reached, as determined by consensus of the research team. Interviews were recorded, transcribed verbatim, coded, and analyzed using thematic analysis. Results Twenty parents completed the interview, of whom 89% were mothers and 42% identified a non-English language as their first language. Two major themes and five subthemes (in parentheses) were identified: 1) the impact of health on housing (housing preferences, housing possibilities, housing outcome as a trade-off) and 2) the impact of housing on health (health of the caregiver, health of the child). Some parents reported that their child’s medical needs resulted in specific preferences regarding the location and layout of their home. Parents also indicated that their caregiving role often affected their income and home ownership status, which in turn, affected their housing possibilities. Thus, the housing situation (location and layout of the home) was often the result of a trade-off between the parent’s housing preferences and possibilities. Conclusion Housing is a recognized social determinant of health. We found that among CMC, health also appears to be a significant determinant of housing as families reported that the health of their child impacted their housing preferences and the options available to them (possibilities). To support the health of CMC and their families, policies targeting improved access to subsidized housing, improved sources of funding and regulations allowing families who rent to make accessibility changes are vital. Future research should investigate the impact of household income on housing need and identify interventions to support appropriate housing for CMC.

scholarly journals Mobile and Web-Based Apps That Support Self-Management and Transition in Young People With Chronic Illness: Systematic Review

10.2196/13579 ◽  
2019 ◽  
Vol 21 (11) ◽  
pp. e13579 ◽  
Author(s):  
Yisselle Ilene Virella Pérez ◽  
Sharon Medlow ◽  
Jane Ho ◽  
Katharine Steinbeck
Keyword(s):  
Systematic Review ◽  
Chronic Illness ◽  
Young People ◽  
Physical Health ◽  
Chronic Illnesses ◽  
Self Management ◽  
Management Skills ◽  
Adult Care ◽  
Web Based ◽  
Care Services

Background More adolescents with chronic physical illness are living into adulthood, and they require the development of proficient self-management skills to maintain optimal physical health as they transition into adult care services. It is often during this vulnerable transition period that deterioration in illness control is seen as a result of inadequate self-management skills and understanding of their chronic illness. Mobile technology has been proposed as an innovative opportunity to assist in improving the management of chronic conditions as young people transition to adult care services. Over the past 5 years, there has been a significant increase in research into the use of health-related apps. Objective This study aimed to evaluate the utility and effectiveness of mobile and Web-based health apps that support self-management and transition in young people with chronic physical health illnesses. Methods We conducted a comprehensive review of the literature in 5 bibliographic databases, using key search terms, considering only articles published from 2013, as we were extending the data from 2 previous systematic reviews. Abstracts were screened for possible inclusion by 2 reviewers. Data extraction and quality assessment tools were used for the evaluation of included studies. Results A total of 1737 records were identified from the combined electronic searches, and 854 records were removed as duplicates. A total of 68 full articles were further assessed for eligibility, and 6 articles met our review criteria: 3 pilot studies, 2 randomized controlled trials, and 1 prospective cohort study. Publication years ranged from 2015 to 2018. The apps reported were targeted at type 1 diabetes mellitus, epilepsy, asthma, beta thalassemia major, and sickle cell disease, with a combined sample size of 336. A total of 4 studies included in this review reported being effective in increasing knowledge of the targeted condition and increasing therapy adherence, including increased medication adherence. A total of 2 manuscripts only mentioned the word transition. Participant’s satisfaction was reported for all studies. Heterogeneity of the studies prevented meta-analysis. Conclusions There remain limited data on the effectiveness and use of mobile and Web-based apps, which might facilitate the transition of adolescents with chronic illnesses from pediatric to adult health care services. This systematic review provides an updated overview of available apps for adolescents with chronic illnesses. This systematic review has been unable to provide evidence for effectiveness of this approach, but it does provide insights into future study design, with reference to the development, evaluation, and efficacy of apps tailored for adolescents with chronic illnesses, including the involvement of adolescents in such designs. Trial Registration PROSPERO CRD42018104611; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=104611

Clinical handover practices among healthcare practitioners in acute care services: A qualitative study

2018 ◽  
Vol 28 (1-2) ◽  
pp. 80-88 ◽  
Author(s):  
Gerard Fealy ◽  
Suzanne Donnelly ◽  
Gerardine Doyle ◽  
Maria Brenner ◽  
Mary Hughes ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Acute Care ◽  
Clinical Handover ◽  
Care Services ◽  
Acute Care Services

Pediatric Chronic Critical Illness, Prolonged ICU Admissions, and Clinician Distress

2021 ◽  
Author(s):  
Alison H. Miles ◽  
Cynda H. Rushton ◽  
Brian M. Wise ◽  
Aka Moore ◽  
Renee D. Boss
Keyword(s):  
Intensive Care Unit ◽  
Content Analysis ◽  
Intensive Care ◽  
Critical Illness ◽  
Pediatric Intensive Care Unit ◽  
Pediatric Intensive Care ◽  
Goals Of Care ◽  
Chronic Critical Illness ◽  
Conventional Content Analysis ◽  
Clinical Interactions

AbstractTo gain an in-depth understanding of the experience of pediatric intensive care unit (PICU) clinicians caring for children with chronic critical illness (CCI), we conducted, audiotaped, and transcribed in-person interviews with PICU clinicians. We used purposive sampling to identify five PICU patients who died following long admissions, whose care generated substantial staff distress. We recruited four to six interdisciplinary clinicians per patient who had frequent clinical interactions with the patient/family for interviews. Conventional content analysis was applied to the transcripts resulting in the emergence of five themes: nonbeneficial treatment; who is driving care? Elusive goals of care, compromised personhood, and suffering. Interventions directed at increasing consensus, clarifying goals of care, developing systems allowing children with CCI to be cared for outside of the ICU, and improving communication may help to ameliorate this distress.

Factors Associated With Unplanned Acute Care Services for Patients With Newly Diagnosed Hematologic Malignancies

2021 ◽  
pp. 1197-1206
Author(s):  
Kai Zu ◽  
Kristina L. Greenwood ◽  
Joyce C. LaMori ◽  
Besa Smith ◽  
Tyler Smith ◽  
...  
Keyword(s):  
Acute Care ◽  
Predictive Models ◽  
Psychosocial Functioning ◽  
Predictive Accuracy ◽  
Care Utilization ◽  
Medical Complication ◽  
Quality Reporting ◽  
Care Services ◽  
Acute Care Services ◽  
The Impact

PURPOSE This study evaluated risk factors predicting unplanned 30-day acute service utilization among adults subsequent to hospitalization for a new diagnosis of leukemia, lymphoma, or myeloma. This study explored the prevalence of medical complications (aligned with OP-35 measure specifications from the Centers for Medicare & Medicaid Services [CMS] Hospital Outpatient Quality Reporting Program) and the potential impact of psychosocial factors on unplanned acute care utilization. METHODS This study included 933 unique patients admitted to three acute care inpatient facilities within a nonprofit community-based health care system in southern California from 2012 to 2017. Integrated comprehensive data elements from electronic medical records and facility oncology registries were leveraged for univariate statistics, predictive models constructed using multivariable logistic regression, and further exploratory data mining, with predictive accuracy of the models measured with c-statistics. RESULTS The mean age of study participants was 65 years, and 55.1% were male. Specific diagnoses were lymphoma (48.7%), leukemia (35.2%), myeloma (14.0%), and mixed types (2.1%). Approximately one fifth of patients received unplanned acute care services within 30 days postdischarge, and over half of these patients presented with one or more symptoms associated with the CMS medical complication measure. The predictive models, with c-statistics ranging from 0.7 and above for each type of hematologic malignancy, indicated good predictive qualities with the impact of psychosocial functioning on the use of acute care services ( P values < .05), including lack of consult for social work during initial admission (lymphoma or myeloma), history of counseling or use of psychotropic medications (lymphoma), and past substance use (myeloma). CONCLUSION This study provides insights into patient-related factors that may inform a proactive approach to improve health outcomes, such as enhanced care transition, monitoring, and support interventions.

Perceptions of emergency medicine and acute care among a cohort of non-emergency medicine health providers in Myanmar

2019 ◽  
Author(s):  
Corey B. Bills ◽  
Peter Acker ◽  
Tina McGovern ◽  
Rebecca Walker ◽  
Htoo Ohn ◽  
...  
Keyword(s):  
Emergency Medicine ◽  
Acute Care ◽  
Emergency Care ◽  
Healthcare Providers ◽  
Unmet Need ◽  
Health Providers ◽  
Care Providers ◽  
Convenience Sample ◽  
Care Services ◽  
Acute Care Services

Abstract Background Currently, Myanmar does not have a nationalized emergency care or emergency medical services (EMS) system. The provision of emergency medicine (EM) education to physicians without such training is essential to address this unmet need for high quality emergency care. We queried a group of healthcare providers in Myanmar about their experience, understanding and perceptions regarding the current and future needs for EM training in their country. Methods A 34-question survey was administered to a convenience sample of healthcare workers from two primary metropolitan areas in Myanmar to assess exposure to and understanding of emergency and pre-hospital care in the country. Results 236 of 290 (81% response rate) individuals attending one of two full-day symposia on emergency medicine completed the survey. The majority of respondents were female (n=138, 59%), physicians (n=171, 74%), and working in private practice (n=148, 64%). A majority of respondents (n=133, 57%) spent some to all of their clinical time providing acute and emergency care however 83.5% (n=192) of all surveyed reported little or no past training in emergency care; and those who have received prior emergency medicine training were more likely to care for emergencies (>2 weeks training; p=.052). 81% (n= 184) thought the development of emergency and acute care services should be a public health priority. Conclusions Although this subset of surveyed health practitioners commonly provides acute care, providers in Myanmar may not have adequate training in emergency medicine. Continued efforts to train Myanmar’s existing healthcare workforce in emergency and acute care should be emphasized.

Chronic Condition Management Using Remote Monitoring and Telehomecare

2015 ◽  
pp. 3318-3331
Author(s):  
Maximillian E. Stachura ◽  
Ellen B. Bolch ◽  
Katherine F. Piette ◽  
Joseph F. Ebberwein
Keyword(s):  
Health Professional ◽  
Remote Monitoring ◽  
Financial Incentives ◽  
Care Delivery ◽  
Real Life ◽  
Pilot Project ◽  
Models Of Care ◽  
Care Services ◽  
Efficiency And Effectiveness ◽  
Care Models

Individuals afflicted with multiple chronic conditions should be managed in real life settings and real time, while simultaneously reducing use of costly acute care services. New models of care delivery will enable patient participation in life-long care management programs and activities that target “wellness” while minimizing, delaying, or preventing clinical deterioration that requires hospitalization and/or visits to emergency care facilities. Successful care models will likely require new organizational and financial approaches that re-purpose health professional roles, responsibilities, and relationships. Remote monitoring and telehomecare technologies that employ advanced data management and analytic algorithms as well as dashboard displays of clinician- and services-relevant health information will support clinician decision-making at the point and time of care. Optimally, health professional financial incentives will be re-structured to support and sustain outcomes-driven long term chronic care that rewards efficiency and effectiveness. We present a work-in-progress model, RightHealthTM, including pilot project outcomes.

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