scholarly journals Parent Educational Intervention Program for Improving Parental Knowledge, Self-efficacy and Health Related Quality of life in Children with Sickle Cell Disease Using Smartphone Technology: A Randomized Controlled Trial

2020 ◽  
Author(s):  
YUSRA AL NASIRI ◽  
Eufemia Jacob ◽  
Eunice Lee ◽  
Adey Nyamathi ◽  
Mary-Lynn Brecht ◽  
...  
Keyword(s):  
Educational Intervention ◽  
Self Efficacy ◽  
Intervention Program ◽  
Parental Knowledge ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related ◽  
Smartphone Technology

Abstract Background Sickle cell disease (SCD) is a genetic blood disorder that increases the risk for recurrent painful episodes. Parents’ knowledge regarding SCD management is poor, leading to poor symptom management and lower Health Related Quality of Life (HRQOL) in children with SCD. The purpose of this study was to examine the effects of a parent educational intervention program ( PEIP ) on the parental knowledge, self-efficacy and perception of the HRQOL of their children with SCD.Methods Two groups of Omani parents of children with SCD were randomly assigned to either an experimental group (n=37) receiving PEIP accessed on a smartphone + weekly phone reinforcement for four weeks, or a control group (n=35) receiving Standard Educational Program (SEP) as part of standard of care. Outcome measures were knowledge, self-efficacy and HRQOL of children with SCD. Knowledge Questionnaire, Self-Efficacy Scale, and HRQOL-SCD + HRQOL-GENERIC were administered twice (at enrollment, and 4 weeks after enrollment). Statistical Pakage for Social Science, version 24 was used for data analyses.Results Parents’ knowledge and self-efficacy scores were significantly higher for the intervention group (PEIP) when compared to the SEP 4 weeks post intervention. Also, The total HRQOL scores were higher at 4 weeks compared to baseline, and were also higher in the PEIP compared to the SEP. Parents’ knowledge and self-efficacy were significant predictors of HRQOL in children with SCD.Conclusions PEIP delivered by using a smartphone was effective in improving the parents’ knowledge, self-efficacy in symptom management, and parent and child perception of HRQOL. PEIP was innovative in that it targeted all dimensions of HRQOL in children with SCD. Finally, the family played an important role in the process of care and therefore, developing family-based interventions is the key factor for improving HRQOL in children with SCD. The study highlighted the effectiveness of smartphone technology for delivering a high quality educational intervention program for parents and their families.

scholarly journals Improvement in Stress, General Self-Efficacy, and Health Related Quality of Life following Patient Education for Patients with Neuroendocrine Tumors: A Pilot Study

2013 ◽  
Vol 2013 ◽  
pp. 1-9 ◽  
Author(s):  
Trude Haugland ◽  
Marijke Veenstra ◽  
Morten H. Vatn ◽  
Astrid K. Wahl
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Neuroendocrine Tumors ◽  
Educational Intervention ◽  
Self Efficacy ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
General Self Efficacy

The purpose of the study was to evaluate changes in general self-efficacy, health related quality of life (HRQoL), and stress among patients with neuroendocrine tumors (NET) following a multidisciplinary educational intervention. Forty-one patients were enrolled in this exploratory pilot study. A total of 37 patients completed the full 26-week intervention based on the principles of self-efficacy. General self-efficacy was measured by the General Self-Efficacy Scale, HRQoL was measured with the SF-36, and stress was measured with the Impact of Event Scale. Mixed effect models were used to evaluate changes in general self-efficacy, mental and physical components of HRQoL, and stress adjusting for demographic and clinical variables. Results showed significant improvements in patients’ general self-efficacy (β= 0.71;P<0.05), physical component scores of HRQoL (β= 3.09;P<0.01), and stress (β=-2.10,P=0.008). Findings suggest that patients with NET have the capacity to improve their ability to cope with their disease, problem-solve, improve their physical status, and reduce their stress following an educational intervention based on the principles of self-efficacy. These preliminary data provide a basis for future randomized controlled trials to test interventions to improve HRQoL for patients with NET.

Health-related quality of life and neuropathic pain in sickle cell disease in Jamaica

2021 ◽  
pp. 101107
Author(s):  
Rachel Bartlett ◽  
Zachary Ramsay ◽  
Amza Ali ◽  
Justin Grant ◽  
Angela Rankine-Mullings ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neuropathic Pain ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

scholarly journals How to recruit inactive residents for lifestyle interventions: participants’ characteristics based on various recruitment strategies

2020 ◽  
Author(s):  
Eva Smit ◽  
Karlijn Leenaars ◽  
Annemarie Wagemakers ◽  
Koos van der Velden ◽  
Gerard Molleman
Keyword(s):  
Quality Of Life ◽  
Self Efficacy ◽  
Target Group ◽  
Recruitment Strategy ◽  
Recruitment Strategies ◽  
Lifestyle Interventions ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Summary Care Sport Connectors (CSCs) have been appointed to create a connection between primary care and physical activity (PA) sectors to stimulate inactive residents into becoming physically active. Adequate recruitment strategies are necessary to reach the intended target group in order to foster the sustainability of lifestyle interventions. The objective of this study is to explore PA behavior and health characteristics of the target group reached by CSCs and if these characteristics differ between participants when grouped based on how they were recruited. Participants from lifestyle interventions were included between September 2014 and April 2016 using a purposive sampling method. Participants were recruited through CSCs via public relations (n = 135), a personal letter (n = 136), or a referral (n = 98) and compared based on their PA level, health-related quality of life, motivation, self-efficacy, morbidity and health-related fitness. Scores were analyzed with a multi-level (mixed model) analysis measured before the intervention. The three groups were different in PA level (p = 0.002). The outcomes regarding health-related quality of life, motivation, and number of somatic disorders were also significantly different for the three groups, except for the categories of mental health (p = 0.145) and self-efficacy (p = 0.464). For all dimensions, the referral group scored the least favorable. The investment in time and money for an active recruitment strategy like referrals is worthwhile because it provides CSCs the opportunity to reach people who are inactive and at risk of chronic disease. Future studies are necessary to reveal the effect on PA levels and health in the long-term.

scholarly journals Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity

2020 ◽  
Vol 34 (4) ◽  
pp. 304-314 ◽  
Author(s):  
Lilian Bravo ◽  
Mary K. Killela ◽  
Beck L. Reyes ◽  
Karla Marie Bathan Santos ◽  
Vanessa Torres ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Illness ◽  
Self Efficacy ◽  
Self Management ◽  
Health Related Quality ◽  
Medical Complexity ◽  
Related Quality ◽  
Health Related

scholarly journals Health-Related Quality of Life of Children and Adolescents with Sickle Cell Disease in the Middle East and North Africa Region

2020 ◽  
Vol 20 (4) ◽  
pp. e280-289
Author(s):  
Suthan Pandarakutty ◽  
Kamala Murali ◽  
Judie Arulappan ◽  
Sulaiman D. Al Sabei
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Middle East ◽  
Children And Adolescents ◽  
North Africa ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

Sickle cell disease (SCD) can significantly impair the health-related quality of life (HRQOL) of children and adolescents. This review aimed to assess current evidence regarding the HRQOL of children and adolescents with SCD in the Middle East and North Africa region. A systematic search of various databases was conducted to identify relevant articles, including MEDLINE® (National Library of Medicine, Bethesda, Maryland, USA), Scopus® (Elsevier, Amsterdam, the Netherlands), Cumulative Index to Nursing and Allied Health Literature®, Masader (Oman Virtual Science Library, Muscat, Oman) and EBSCOhost (EBSCO Information Services, Ipswich, Massachusetts, USA). A total of 533 articles were identified; however, only 10 were eligible for inclusion in the final analysis. Results from these studies showed that children and adolescents with SCD had compromised HRQOL compared to their healthy peers, particularly in terms of physical, psychosocial, familial, financial and academic functioning. Therefore, interventions are necessary to improve overall HRQOL outcomes for this population. Keywords: Sickle Cell Disease; Health-Related Quality Of Life; Infants; Children; Adolescents; Middle East; North Africa.

scholarly journals Parent-reported sleep problems in children and adolescents with sickle cell disease: relationship to health-related quality of life

2021 ◽  
Author(s):  
Serkan Gunes ◽  
Rahime Aldemir ◽  
Adem Gunes ◽  
Ozalp Ekinci
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Sickle Cell ◽  
Sleep Problems ◽  
Well Being ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

IntroductionChildren with sickle cell disease (SCD) can present a variety of clinical symptoms that may affect their sleep and health-related quality of life (HRQOL). This study aims to investigate the relation between sleep problems and HRQOL in children and adolescents with SCD.Material and methodsThe sample included 86 children and adolescents in the SCD patient group and 82 healthy controls, with an age range of 8-16 years. Subjects for the study were recruited from the Sickle Cell and Thalassemia Center of Hatay State Hospital, Hatay, Turkey. The Children’s Sleep Habits Questionnaire (CSHQ) was used to evaluate sleep problems and Kinder Lebens­qualitätsfragebogen: Children’s Quality of Life Questionnaire – revis­ed (KINDL-R) was used to examine HRQOL.ResultsTotal score, bedtime resistance, and night waking subscores of CSHQ were significantly higher in children with SCD when compared to healthy children. Total score, physical well-being, emotional well-being, social, and school subscores of KINDL-R were significantly lower in the patient group. Among SCD children, total score, bedtime resistance, sleep onset delay, daytime sleepiness, and parasomnias subscores of CSHQ were negatively correlated with KINDL-R total score. In the regression model, disease severity and CSHQ total score had significant negative associations with KINDL-R total score.ConclusionsSleep problems in SCD children appear to be negatively linked with HRQOL. Disease severity and sleep problems may be predictors of overall HRQOL in children and adolescents with SCD.

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