Lessons learned in the development of a nurse‐led family centered approach to developing a holistic comprehensive clinic and integrative holistic care plan for children with cerebral palsy

2021 ◽  
Author(s):  
Lamara Love ◽  
Amy Newmeyer ◽  
Nancy Ryan‐Wenger ◽  
Garey Noritz ◽  
Micah A. Skeens
Keyword(s):  
Cerebral Palsy ◽  
Lessons Learned ◽  
Care Plan ◽  
Holistic Care ◽  
Children With Cerebral Palsy ◽  
Family Centered

LEARNING THROUGH PLAYING FOR CHILDREN WITH CEREBRAL PALSY

2015 ◽  
Vol 78 (2-2) ◽  
Author(s):  
Nuraini Hidayah Sulaiman ◽  
Masitah Ghazali
Keyword(s):  
Cerebral Palsy ◽  
User Interface ◽  
Learning Process ◽  
Interface Design ◽  
User Study ◽  
Lessons Learned ◽  
Software Application ◽  
Children With Cerebral Palsy ◽  
Learning Software ◽  
Children Education

Guidelines for designing and developing a learning prototype that are compatible with the limited capabilities of children with Cerebral Palsy (CP) are established in the form of a model, known as Learning Software User Interface Design Model (LSUIDM), to ensure children with CP are able to grasp the concepts of a learning software application prototype. In this paper, the LSUIDM is applied in developing a learning software application for children with CP. We present a user study on evaluating a children education game for CP children at Pemulihan dalam Komuniti in Johor Bahru. The findings from the user study shows that the game, which was built, based on the LSUIDM can be applied in the learning process for children with CP and most notably, the children are engaged and excited using the software. This paper highlights the lessons learned from the user study, which should be significant especially in improving the application. The results of the study show that the application is proven to be interactive, useful and efficient as the users used it.

scholarly journals Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned

2018 ◽  
Vol 2 (1) ◽  
pp. 20-26 ◽  
Author(s):  
Briana L. Rigau ◽  
Elizabeth A. Scully ◽  
Jodi K. Dooling-Litfin ◽  
Natalie J. Murphy ◽  
Beth M. McManus ◽  
...  
Keyword(s):  
Early Intervention ◽  
Scale Up ◽  
Academic Community ◽  
Lessons Learned ◽  
Care Plan ◽  
Quality Improvement Initiative ◽  
Community Partnership ◽  
Coordinated Care ◽  
Patient Reported ◽  
Family Centered

BackgroundElectronic data capture is essential to advancing family-centered coordinated care in early intervention (EI). The purpose of this paper is to report on EI service coordinator response to piloting an electronic parent-reported outcome (e-PRO) assessment as part of their routine workflow, including lessons learned that may inform future phases of e-PRO implementation.MethodsThis second pilot study involved families enrolled in a large EI program (n=1040 families) in concert with their implementation of a statewide quality improvement initiative for care plan development and outcomes reporting. A total of 22 EI service coordinators and supervisors were engaged in 3 phases: initial e-PRO intervention, peer-mentor enhancement, and standard recruitment protocol.ResultsImplementation of the e-PRO intervention and peer-mentoring enhancement yielded low enrollment rates over the first 6 months (n=17). A standard recruitment protocol has resulted in enrollment growth (n=83) towards the targeted enrollment rate (n=832).ConclusionsThis study reports on early insights for building and sustaining a productive academic-community partnership for e-PRO implementation to support family-centered coordinated care. Lessons learned from this academic-community partnership with respect to strategies for enhancing community significance, collaboration, return, and control are discussed as they inform further development of this intervention before scale-up.

Exploring the process of health in mothers of children with cerebral palsy: Changing “clinical reasoning”

2021 ◽  
pp. 030802262110206
Author(s):  
Leila Dehghan ◽  
Hamid Dalvand ◽  
Mohammad Reza Hadian Rasanani ◽  
Greg Kelly
Keyword(s):  
Cerebral Palsy ◽  
Clinical Settings ◽  
Theory Approach ◽  
Analysis Method ◽  
Children With Disability ◽  
Theoretical Sampling ◽  
Children With Cerebral Palsy ◽  
Constant Comparative Analysis ◽  
Grounded Theory Approach ◽  
Family Centered

Introduction The issue of the health status of mothers of children with disability is one that is beginning to be addressed more fully. This study aimed to explore the process of health in mothers during caregiving of children with cerebral palsy (CP). Method A qualitative research method with a grounded theory approach was used, including purposive and theoretical sampling. A constant comparative analysis method was adopted, and data were gathered from 15 mothers with CP children through interviews. Results The results were grouped into six main categories: Self-neglecting of their health, facing challenges in caring their children, physical and psychosocial damages, perceiving threat of health problems from concern to action, trying to regain their health, and caring in a complex context. “Facing challenges in caring” was extracted as a core concept. Conclusion Results showed an urgent need to establish family-centered services in clinical settings and change the “way of thinking” of the health provider system.

scholarly journals A qualitative study to conceptualize levels of awareness, acceptance and expectations in parents of children with cerebral palsy in Gujarat, India

2018 ◽  
Vol 5 (2) ◽  
pp. 442
Author(s):  
Vivek H. Ramanandi ◽  
Maitry D. Jayswal ◽  
Dhara N. Panchal
Keyword(s):  
Cerebral Palsy ◽  
Care Program ◽  
Family Centered Care ◽  
Structured Interviews ◽  
Rehabilitation Team ◽  
Wide Range ◽  
Children With Cerebral Palsy ◽  
Centered Care ◽  
Family Centered

Background: Caring for a child with a disability presents a multifaceted challenge for managing and coping with the child’s functional limitations and possible long term dependence to the caregiver and family. A wide range of psychosocial problems are experienced by the parents of children with CP. As an important member of the rehabilitation team, Physiotherapists comes in regular and long term contact with family and care givers of the CP child. This increase responsibilities of a physiotherapist from more than just dealing with sensory-motor rehabilitation of a CP child to understand need and expectations and guide/counsel the caregiver, parents or family as and when needed. Studies like this can provide valuable information for designing a family centered care program for children with CP. Objective of present study was to identify the main concepts which represent levels of awareness, acceptance and their expectations in parents of children with cerebral palsy in Gujarat.Methods: Qualitative research design using in-depth semi structured interviews was used for the study. Total 21 parents were selected using purposive sampling and were interviewed till data saturation was achieved. The main descriptive elements regarding their levels of awareness, acceptance and expectations were extracted using content analysis method.Results: Common themes such as disturbed social relationships, health problems, financial problems, worries about future of the child, need for more support services, and lack of adequate number of trained physiotherapists were experienced by the parents.Conclusions: A wide range of experiences were described by the parents of children with CP. Studies like this can provide valuable information for improving depth and quality of rehabilitation services by a physiotherapist through a family centered care program for children with CP. 

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