What Do We Really Know About the Transition to Adult-Centered Health Care? A Focus on Cerebral Palsy and Spina Bifida

2007 ◽  
Vol 88 (8) ◽  
pp. 1064-1073 ◽  
Author(s):  
Jessie A. Binks ◽  
Wendy S. Barden ◽  
Tricia A. Burke ◽  
Nancy L. Young
Keyword(s):  
Health Care ◽  
Cerebral Palsy ◽  
Spina Bifida

Engagement in Household Chores in Youth With Chronic Conditions: Health care Transition Implications

2020 ◽  
pp. 153944922092814
Author(s):  
Jordan Richards ◽  
Meaghan Nazareth ◽  
Miranda A. L. van Tilburg ◽  
Nina Jain ◽  
Laura Hart ◽  
...  
Keyword(s):  
Health Care ◽  
Cerebral Palsy ◽  
Spina Bifida ◽  
Chronic Conditions ◽  
Self Management ◽  
Care Transition ◽  
Household Chores ◽  
Transition Readiness ◽  
Health Care Transition ◽  
Therapeutic Camp

This study examined associations between chores engagement, self-management, and transition readiness in youth with chronic conditions. Youths with various chronic conditions attending a therapeutic camp, and their parents participated. Responses of 165 campers and their parents were analyzed (mean camper age 12.3 ± 2.6 years, 47.9% males, 79.4% White). The most common diagnoses were diabetes, spina bifida, cerebral palsy, and sickle cell anemia. Youth who completed chores manifested higher overall health care transition readiness ([Formula: see text] = 5.17, p = .026) and better communication with providers ([Formula: see text] = 2.98, p = .006) than youth who completed no chores. Higher chores frequency was not more predictive of higher health care transition readiness scores above and beyond the effects of having chores at all. These results suggest that responsible health care behaviors are related to similar actions in other areas of life. Assignment of chores may promote self-management and health care transition readiness in youth with chronic conditions.

Data Mining in Analysis of Biomechanical Signals

2009 ◽  
Vol 147-149 ◽  
pp. 588-593 ◽  
Author(s):  
Marcin Derlatka ◽  
Jolanta Pauk
Keyword(s):  
Data Mining ◽  
Principal Component Analysis ◽  
Cerebral Palsy ◽  
Spina Bifida ◽  
Decision Tree ◽  
Principal Component ◽  
Data Preprocessing ◽  
Component Analysis ◽  
Kernel Principal Component Analysis

In the paper the procedure of processing biomechanical data has been proposed. It consists of selecting proper noiseless data, preprocessing data by means of model’s identification and Kernel Principal Component Analysis and next classification using decision tree. The obtained results of classification into groups (normal and two selected pathology of gait: Spina Bifida and Cerebral Palsy) were very good.

Hospitalization for urinary tract infections and the quality of preventive health care received by people with spina bifida

2009 ◽  
Vol 2 (3) ◽  
pp. 145-152 ◽  
Author(s):  
Brian S. Armour ◽  
Lijing Ouyang ◽  
Judy Thibadeau ◽  
Scott D. Grosse ◽  
Vincent A. Campbell ◽  
...  
Keyword(s):  
Health Care ◽  
Urinary Tract ◽  
Spina Bifida ◽  
Urinary Tract Infections ◽  
Preventive Health Care ◽  
Preventive Health ◽  
Tract Infections

scholarly journals Educational outcomes of children in Wales with cerebral palsy

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Hywel Jones ◽  
Bethan Carter ◽  
Jackie Bethel ◽  
Verity Bennett ◽  
Sarah Rees ◽  
...  
Keyword(s):  
Health Care ◽  
Cerebral Palsy ◽  
School Attendance ◽  
National Curriculum ◽  
Area Deprivation ◽  
Special Educational Needs ◽  
Special Schools ◽  
Data Set ◽  
Education Data ◽  
Teacher Assessments

Background with rationaleIt is recognized that children with disability have special educational needs (SEN). They are likely to have poor school attendance and do not achieve well academically. Many children with a cerebral palsy (CP) have SEN but little is known about their educational provision or outcomes. Main AimTo investigate the educational experience of children in Wales with CP and describe the type of SEN and SEN provision; school attendance; achievement—teacher assessments at the end of the Foundation Phase and Key Stages 2 and 3 of the National Curriculum (NC)—and in General Certificate of Secondary Education (GCSE) examinations. Methods/ApproachData from the Pupil Level Annual School Census (PLASC), NC and GCSE results from 2009 to 2016 were linked with routine e-health records of primary and secondary health care data held in SAIL. The health care records were used to identify pupils who, potentially, had a cerebral palsy. ResultsThe linked data set included around 360,000 pupils per school census of whom 1200–1400 per school census were identified as having a CP, representing a crude prevalence of 0.4%. Adjusted for age, year and sex, there was no significant variation in prevalence by area deprivation. Around 60% of children with a CP have a statement of SEN; over a quarter of CP children are educated in special schools; CP children in mainstream (primary, middle and secondary) schools tended to miss more school sessions (~50% more) than other children and lower percentages achieved the expected levels at Key Stages 2 and 3 and the Level 2 GCSE threshold. Conclusion/Implications This work demonstrates the utility of record-linkage between health and education data to map, monitor and provide information to parents, carers and policymakers about education outcomes for this group of children to inform planning and service provision.

Psychological, cardiometabolic, musculoskeletal morbidity and multimorbidity among adults with cerebral palsy and spina bifida

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Mark D. Peterson ◽  
Paul Lin ◽  
Neil Kamdar ◽  
Edward A. Hurvitz ◽  
Elham Mahmoudi
Keyword(s):  
Cerebral Palsy ◽  
Spina Bifida

scholarly journals Care coordination guidelines for the care of people with spina bifida

2020 ◽  
Vol 13 (4) ◽  
pp. 499-511
Author(s):  
Alexander Van Speybroeck ◽  
Patricia Beierwaltes ◽  
Betsy Hopson ◽  
Suzanne McKee ◽  
Lisa Raman ◽  
...  
Keyword(s):  
Health Care ◽  
Spina Bifida ◽  
Patient Care ◽  
Care Coordination ◽  
Health Care Services ◽  
Treatment Plan ◽  
Age Groups ◽  
Multidisciplinary Care ◽  
Shared Responsibility ◽  
Care Coordinator

Care coordination is the deliberate organization of patient care activities between two or more participants (including the patient) involved in a person’s care to facilitate the appropriate delivery of health care services. Organizing care involves the marshalling of personnel and other resources needed to carry out all required patient care activities. It is often managed by the exchange of information among participants responsible for different aspects of care [1]. With an estimated 85% of individuals with Spina Bifida (SB) surviving to adulthood, SB specific care coordination guidelines are warranted. Care coordination (also described as case management services) is a process that links them to services and resources in a coordinated effort to maximize their potential by providing optimal health care. However, care can be complicated due to the medical complexities of the condition and the need for multidisciplinary care, as well as economic and sociocultural barriers. It is often a shared responsibility by the multidisciplinary Spina Bifida team [2]. For this reason, the Spina Bifida Care Coordinator has the primary responsibility for overseeing the overall treatment plan for the individual with Spina Bifida[3]. Care coordination includes communication with the primary care provider in a patient’s medical home. This article discusses the Spina Bifida Care Coordination Guideline from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida and explores care coordination goals for different age groups as well as further research topics in SB care coordination.

scholarly journals Mothers’ Perceived Barriers to and Recommendations for Health Care Appointment Keeping for Children Who Have Cerebral Palsy

2019 ◽  
Vol 6 ◽  
pp. 233339361986897 ◽  
Author(s):  
Marilyn Ballantyne ◽  
Laurie Liscumb ◽  
Erin Brandon ◽  
Janice Jaffar ◽  
Andrea Macdonald ◽  
...  
Keyword(s):  
Health Care ◽  
Cerebral Palsy ◽  
Well Being ◽  
Rehabilitation Services ◽  
Structured Interviews ◽  
Care Needs ◽  
Care Services ◽  
Care Appointment ◽  
Appointment Keeping ◽  
Competing Priorities

Children with cerebral palsy (CP) require ongoing rehabilitation services to address complex health care needs. Attendance at appointments ensures continuity of care and improves health and well-being. The study’s aim was to gain insight into mothers’ perspectives of the factors associated with nonattendance. A qualitative descriptive design was conducted to identify barriers and recommendations for appointment keeping. Semi-structured interviews were conducted with 15 mothers of children with CP. Data underwent inductive qualitative analysis. Mothers provided rich context regarding barriers confronted for appointment keeping—transportation and travel, competing priorities for the child and family, and health services. Mothers’ recommendations for improving the experience of attending appointments included virtual care services, transportation support, multimethod scheduling and appointment reminders, extended service hours, and increased awareness among staff of family barriers to attendance. The results inform services/policy strategies to facilitate appointment keeping, thereby promoting access to ongoing rehabilitation services for children with CP.

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