scholarly journals Occupational Performance Coaching with Parents to Promote Community Participation and Quality of Life of Young Children with Developmental Disabilities: A Feasibility Evaluation in Hong Kong

2020 ◽  
Vol 17 (21) ◽  
pp. 7993
Author(s):  
Chi-Wen Chien ◽  
Yuen Yi Cynthia Lai ◽  
Chung-Ying Lin ◽  
Fiona Graham
Keyword(s):  
Quality Of Life ◽  
Hong Kong ◽  
Developmental Disabilities ◽  
Young Children ◽  
Community Participation ◽  
Occupational Performance ◽  
Post Intervention ◽  
Community Activities ◽  
Performance Coaching

Participation in community activities contributes to child development and health-related quality of life (HRQOL), but restricted participation has been reported in children with disabilities. Occupational performance coaching (OPC) is an intervention that targets participatory goals in child performance through coaching parents, with evidence of effectiveness for pediatric populations. Little is known about the feasibility of OPC in Hong Kong, or its effect on children’s community participation and HRQOL. A mixed-methods case study design was applied to explore Hong Kong parents’ experience of OPC in relation to goal achievement, community participation, and HRQOL change in children. Four parents of young children with developmental disabilities (aged five to six years) received OPC for three to eight sessions within one to three months. Quantitative pre- and post-intervention data were analyzed descriptively. Semi-structured interviews with parents were conducted at post-intervention, and analyzed using content analysis. Results showed a trend of improvement in goal performance, child involvement in community activities, and specific aspects of HRQOL among most participants. Parents perceived undertaking OPC positively, described gaining insights and skills, and felt supported. The findings suggest that OPC warrants further investigation for use in Hong Kong, to promote children’s community participation and quality of life.

scholarly journals Occupational Performance Coaching With Parents to Promote Community Participation of Young Children With Developmental Disabilities: Protocol for a Feasibility and Pilot Randomized Control Trial

2021 ◽  
Vol 9 ◽  
Author(s):  
Chi-Wen Chien ◽  
Yuen Yi Cynthia Lai ◽  
Chung-Ying Lin ◽  
Fiona Graham
Keyword(s):  
Randomized Controlled Trial ◽  
Hong Kong ◽  
Developmental Disabilities ◽  
Young Children ◽  
Community Participation ◽  
Controlled Trial ◽  
Occupational Performance ◽  
Randomized Controlled ◽  
Performance Coaching ◽  
Children With Developmental Disabilities

Background: High rates of restricted community participation have been reported in young children with developmental disabilities. Occupational performance coaching (OPC), grounded in self-determination theory, aims to facilitate children's participation in life situations through coaching parents. However, there have been limited randomized controlled trials demonstrating the efficacy of OPC, especially with a specific focus on children's community participation. The proposed study is the first step in evaluating the feasibility and acceptability of conducting a pilot randomized controlled trial of OPC in Hong Kong and testing its initial efficacy (in comparison to parent consultation) in promoting children's community participation.Method/Design: A feasibility and pilot double-blind randomized controlled trial will be undertaken. Fifty children aged 6 years or below with developmental disabilities and their parents will be recruited from early intervention centers and/or through social media in Hong Kong. Parents will be randomly assigned to receive OPC or consultation, and will be blinded to group allocation. Outcomes will be assessed by blinded assessors at baseline, pre-intervention, post-intervention, and follow-up. Predetermined success criteria will be used to assess the feasibility of the trial. Qualitative interviews will be conducted with parents to explore the acceptability and perceived impact of OPC.Discussion: This trial will test whether the study protocol and OPC are feasible and acceptable, as well as assess the initial efficacy of OPC to obtain effect size estimates. The results of the trial will inform future preparations for conducting a full-scale efficacy trial of OPC.Trial Registration:ClinicalTrials.gov, U.S. National Library of Medicine, National Institutes of Health (#NCT04796909), Registered on 15th March 2021.

scholarly journals Meaning in Life of Terminally Ill Parent with Young Children – A Quantitative Evaluation with SMiLE

2021 ◽  
Author(s):  
Henning Cuhls ◽  
Gülay Ateş ◽  
Gregory Heuser ◽  
Lukas Radbruch ◽  
Michaela Hesse
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Young Children ◽  
Social Relations ◽  
Meaning In Life ◽  
Home Garden ◽  
Post Intervention ◽  
Perceived Quality Of Life ◽  
Young Parent

Abstract Background Increasing the quality of life is one of the objectives of palliative care. Meaning in life has a significant influence on the perceived quality of life. We found no studies focusing on patients with young children.Methods Young parents diagnosed with life-limiting disease could participate and create an audiobook. Patients were assessed using Schedule for Meaning in Life Evaluaton (SMiLE) pre and post intervention. The SMiLE is a validated instrument to assess meaning in life. Patients list their individual items that provide meaning in life. In a second step they are requested to rate their current level of satisfaction and in a last step they are asked to rank the importance of each item. Overall indices of weighting, satisfaction and importance are calculated. In addition, participants were interviewed twice over the course regarding expectations, concerns, motivation, and experiences.ResultsThe data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of seven years could be included. The involvement with the SMiLE made patients think about their resources. Most important items were in decreasing order family (100%), social relations (79.6%), leisure time (61.1%), nature/animals (38.9%), and home/garden (29.6%). Index of weighting (IOW) was 81.5, index of satisfaction (IOS) was 71.4, and a total SMiLE Index (IOWS) was 72.4. Parent felt limited by their illness in being a mother or father, as they wanted to be.ConclusionItems relevant for young parent showed differences to evaluations of cancer patients and palliative care patients. Most important item for meaning in life is the family numerated by all participants. The results indicate that evaluation of meaning in life is a coping strategy and helps young parent with young children.

Randomized controlled trial of occupation performance coaching for families of children with autism spectrum disorder by means of telerehabilitation

2021 ◽  
pp. 030802262110614
Author(s):  
Ali Reza Jamali ◽  
Mehdi Alizadeh Zarei ◽  
Mohammad Ali Sanjari ◽  
Malahat AkbarFahimi ◽  
Seyed Hassan Saneii
Keyword(s):  
Quality Of Life ◽  
Prosocial Behavior ◽  
Behavioral Problems ◽  
Self Efficacy ◽  
Children With Autism ◽  
Autism Spectrum ◽  
Prosocial Behaviors ◽  
Occupational Performance ◽  
Performance Coaching

Introduction This study examined the effectiveness of occupational performance coaching, which was delivered through telerehabilitation, in improving children with autism spectrum disorders (ASD) occupational performance, behavior problems, and prosocial behavior in addition to parental self-efficacy and quality of life. Method Forty-three children were matched and randomized to occupational performance coaching or waitlist groups. Occupational performance, parental self-efficacy, behavioral problems, and prosocial behaviors were assessed using the Canadian Occupational Performance Measure, Child adjustment and parent efficacy scale-developmental disability (CAPES-DD), the Short-Form Health Survey, and goal attainment scale. Results The intervention group showed greater improvement on occupational performance, specified goals, and behavioral problems. No progress was seen on the CAPES-DD prosocial behavior subscale. In addition, parental quality of life improvement was not maintained after the follow-up phase. Conclusion Occupation performance coaching, which was delivered through telerehabilitation, was effective on children with ASD occupational performance and parental self-efficacy, but it was not effective on the prosocial behaviors of these children.

Abstract W P135: Usability of a Virtual Reality Tool for In-Home Stroke Rehabilitation: A Case Series

Stroke ◽  
2015 ◽  
Vol 46 (suppl_1) ◽  
Author(s):  
Rachel Proffitt ◽  
Belinda Lange ◽  
Marisa Sevick
Keyword(s):  
Quality Of Life ◽  
Virtual Reality ◽  
Motor Function ◽  
Primary Outcome ◽  
Case Series ◽  
Chronic Stroke ◽  
Occupational Performance ◽  
Post Intervention ◽  
Home Setting

Stroke is the leading cause of serious, long-term disability in the United States. Exercise and activity in the chronic phase of stroke have shown to be beneficial in achieving and maintaining improvements in motor and ADL function. Interactive video games and virtual reality (VR) have also shown to be effective in improving motor function following stroke. We developed a prototype VR rehabilitation tool called Mystic Isle that uses the Microsoft Kinect sensor and a standard PC. The purpose of this case series was to explore the usability of Mystic Isle as a 5-week intervention to improve performance of client identified activities for adults (>21 years) with chronic stroke (>6 months post) in the home setting. Three participants with chronic stroke completed the five week intervention. Outcomes were measured at baseline, immediately pre-intervention (after a 2 week delay from baseline), and immediately post-intervention. The intervention was conducted in each participant’s home. The results of the Canadian Occupational Performance Measure at baseline guided the choice of the virtual tasks for the intervention. The participants were instructed to complete 4 hours each week. The primary outcome was usability and feasibility of the intervention measured with the Game Experience Questionnaire, the System Usability Questionnaire, and a semi-structured interview. Primary outcome data were analyzed using a mixed methods grounded theory approach. Secondary outcomes included motor impairment, quality of life and occupational performance measured using standard clinical measures. Two of the three participants had very positive responses to the intervention and use of the VR tool in the home setting. All three participants demonstrated improvements in quality of life from pre- to post-intervention and improvements in motor function were scattered across participants. All participants expressed the desire to use the system in the future if improvements were made to increase the usability of the system for the home setting. They also spoke about how they attempted to integrate the game into their daily routine or schedule. A major barrier to use for all participants was a busy day that left them too fatigued to interact with the system and complete the intervention.

scholarly journals SWE and SMI ultrasound techniques for monitoring needling treatment of ankylosing spondylitis: study protocol for a single-blinded randomized controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Mengyu Wang ◽  
Wen Fu ◽  
Lingcui Meng ◽  
Jia Liu ◽  
Lihua Wu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Blood Flow ◽  
Ankylosing Spondylitis ◽  
Outcome Measures ◽  
Healthy Subjects ◽  
Acupuncture Group ◽  
Musculoskeletal Ultrasound ◽  
Sham Control ◽  
Post Intervention

Abstract Background Ankylosing spondylitis (AS) is a high-incidence disease in young men that interferes with patients’ physical and mental wellbeing and overall quality of life (QoL). It is often accompanied by arthralgia, stiffness, and limited lumbar flexibility. Acupuncture is safe and effective for reducing the symptoms of AS, but the underlying mechanisms by which it does so are not fully understood. Therefore, to objectively assess acupuncture efficacy, which is critical for patients making informed decisions about appropriate treatments, we will use shear-wave elastography (SWE) and superb microvascular imaging (SMI) ultrasound techniques to evaluate elasticity of lumbar paraspinal muscles and blood flow to the sacroiliac joint (SIJ) in AS. Methods We will recruit a total of 60 participants diagnosed with AS and 30 healthy subjects. Participants will be randomly allocated 1:1 to either an acupuncture group or a sham control acupuncture group. Primary-outcome measures will be musculoskeletal ultrasound, Ankylosing Spondylitis Quality of Life Scale (ASQoL), Bath Ankylosing Spondylitis Metrology Index (BASMI), and the Visual Analogue Scale (VAS) for pain. Secondary outcome measures will be the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), Bath Ankylosing Spondylitis Function Index (BASFI), and Fatigue Scale-14 (FS-14). We will monitor the effect of acupuncture or sham acupuncture on blood flow and SIJ inflammation using SMI, lumbar-muscle stiffness using SWE and the lumbar paraspinal-muscle cross-sectional area (CSA) using a two-dimensional (2D) grayscale imaging. QoL, physical function, and fatigue will be assessed using an evaluation scale or questionnaire developed for this study, with outcomes measured by the ASQoL, BASMI, BASDAI, BASFI, and FS-14. Healthy subjects will not receive acupuncture but undergo only musculoskeletal ultrasound at baseline. Acupuncture and sham control acupuncture interventions will be conducted for 30 min, 2–3 times/week for 12 weeks. Musculoskeletal ultrasound will be conducted at baseline and post-intervention, while other outcomes will be measured at baseline, 6 weeks, and post-intervention. The statistician, outcome assessor, and participants will be blinded to treatment allocation. Discussion The results of this single-blinded, randomized trial with sham controls could help demonstrate the efficacy of acupuncture and clarify whether musculoskeletal ultrasound could be used to evaluate AS. Trial registration ClinicalTrials.gov ChiCTR2000031476. Registered 3 April 2020.

Association between multimodality measures of aortic stenosis severity and quality-of-life improvement outcomes after transcatheter aortic valve replacement

2021 ◽  
Author(s):  
Michael A Catalano ◽  
Shahryar G Saba ◽  
Bruce Rutkin ◽  
Greg Maurer ◽  
Jacinda Berg ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Computed Tomography ◽  
Aortic Valve ◽  
Transcatheter Aortic Valve Replacement ◽  
Multivariable Analysis ◽  
Calcium Score ◽  
Post Intervention ◽  
Transcatheter Aortic Valve

Abstract Aims Up to 40% of patients with aortic stenosis (AS) present with discordant grading of AS severity based on common transthoracic echocardiography (TTE) measures. Our aim was to evaluate the utility of TTE and multi-detector computed tomography (MDCT) measures in predicting symptomatic improvement in patients with AS undergoing transcatheter aortic valve replacement (TAVR). Methods and results A retrospective review of 201 TAVR patients from January 2017 to November 2018 was performed. Pre- and post-intervention quality-of-life was measured using the Kansas City Cardiomyopathy Questionnaire (KCCQ-12). Pre-intervention measures including dimensionless index (DI), stroke volume index (SVI), mean transaortic gradient, peak transaortic velocity, indexed aortic valve area (AVA), aortic valve calcium score, and AVA based on hybrid MDCT-Doppler calculations were obtained and correlated with change in KCCQ-12 at 30-day follow-up. Among the 201 patients studied, median KCCQ-12 improved from 54.2 pre-intervention to 85.9 post-intervention. In multivariable analysis, patients with a mean gradient >40 mmHg experienced significantly greater improvement in KCCQ-12 at follow-up than those with mean gradient ≤40 mmHg (28.1 vs. 16.4, P = 0.015). Patients with MDCT-Doppler-calculated AVA of ≤1.2 cm2 had greater improvements in KCCQ-12 scores than those with computed tomography-measured AVA of >1.2 cm2 (23.4 vs. 14.1, P = 0.049) on univariate but not multivariable analysis. No association was detected between DI, SVI, peak velocity, calcium score, or AVA index and change in KCCQ-12. Conclusion Mean transaortic gradient is predictive of improvement in quality-of-life after TAVR. This measure of AS severity may warrant greater relative consideration when selecting the appropriateness of patients for TAVR.

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