The Effectiveness of Self-Management Programs on Self-Efficacy in Patients With Sickle Cell Disease

2014 ◽  
Vol 3 (3) ◽  
Author(s):  
Mehrnaz Ahmadi ◽  
Abdolali Shariati ◽  
Simin Jahani ◽  
Hamed Tabesh ◽  
Bijan Keikhaei
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Self Management ◽  
Cell Disease

scholarly journals Decision-making involvement, self-efficacy, and the relationship to transition readiness in youth with sick cell disease

2020 ◽  
Author(s):  
◽  
Maureen M. Varty
Keyword(s):  
Decision Making ◽  
Parent Involvement ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Self Management ◽  
Cell Disease ◽  
Specific Knowledge ◽  
Transition Readiness ◽  
Healthcare Settings

Transition from pediatric to adult healthcare settings poses significant risks to morbidity and mortality for adolescents and young adults with sickle cell disease. Increasing transition readiness, the acquisition of disease-specific knowledge and self-management skills, has been proposed as strategy to improve health outcomes for adolescents and young adults (AYA) after transition. To date, few studies have looked at factors that may influence transition readiness, a measure of disease-specific knowledge and self-management, in AYAs with sickle cell disease. This limits healthcare providers' and researchers' abilities to develop interventions specific to the unique needs of the population. This dissertation study examined the relationships between decision-making involvement, self-efficacy of sickle cell disease self-management, and transition readiness in AYAs with sickle cell disease prior to transition to adult healthcare settings. This study found that higher levels of expressive behaviors such as sharing opinions and ideas in decision-making were associated with higher levels of AYA healthcare responsibility. Self-efficacy was positively associated with transition readiness but inversely related to AYA healthcare responsibility. Parent involvement was negatively associated with AYA healthcare responsibility. Future research interventions that increase AYA involvement in decision-making regarding disease management, increase self-efficacy, and safely reduce parent involvement may positively influence their capacity for self-management.

scholarly journals Toward a Conversational Agent to Support the Self-Management of Adults and Young Adults With Sickle Cell Disease: Usability and Usefulness Study

2021 ◽  
Vol 3 ◽  
Author(s):  
David-Zacharie Issom ◽  
Marie-Dominique Hardy-Dessources ◽  
Marc Romana ◽  
Gunnar Hartvigsen ◽  
Christian Lovis
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Self Care ◽  
Health Coaching ◽  
Self Management ◽  
Behavior Changes ◽  
Cell Disease ◽  
Blood Disorder ◽  
System Usability Scale

Sickle cell disease (SCD) is the most common genetic blood disorder in the world and affects millions of people. With aging, patients encounter an increasing number of comorbidities that can be acute, chronic, and potentially lethal (e.g., pain, multiple organ damages, lung disease). Comprehensive and preventive care for adults with SCD faces disparities (e.g., shortage of well-trained providers). Consequently, many patients do not receive adequate treatment, as outlined by evidence-based guidelines, and suffer from mistrust, stigmatization or neglect. Thus, adult patients often avoid necessary care, seek treatment only as a last resort, and rely on self-management to maintain control over the course of the disease. Hopefully, self-management positively impacts health outcomes. However, few patients possess the required skills (e.g., disease-specific knowledge, self-efficacy), and many lack motivation for effective self-care. Health coaching has emerged as a new approach to enhance patients' self-management and support health behavior changes. Recent studies have demonstrated that conversational agents (chatbots) could effectively support chronic patients' self-management needs, improve self-efficacy, encourage behavior changes, and reduce disease-severity. To date, the use of chatbots to support SCD self-management remains largely under-researched. Consequently, we developed a high-fidelity prototype of a fully automated health coaching chatbot, following patient-important requirements and preferences collected during our previous work. We recruited a small convenience sample of adults with SCD to examine the usability and perceived usefulness of the system. Participants completed a post-test survey using the System Usability Scale and the Usefulness Scale for Patient Information Material questionnaire. Thirty-three patients participated. The majority (64%) was affected by the most clinically severe SCD genotypes (Hb SS, HbSβ0). Most participants (94%) rated the chatbots as easy and fun to use, while 88% perceived it as useful support for patient empowerment. In the qualitative phase, 72% of participants expressed their enthusiasm using the chatbot, and 82% emphasized its ability to improve their knowledge about self-management. Findings suggest that chatbots could be used to promote the acquisition of recommended health behaviors and self-care practices related to the prevention of the main symptoms of SCD. Further work is needed to refine the system, and to assess clinical validity.

scholarly journals Feasibility of an mHealth self-management intervention for children and adolescents with sickle cell disease and their families

2021 ◽  
Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Amy Gulledge ◽  
Kenneth Ruggiero ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Rating Scale ◽  
Management Strategies ◽  
Self Management ◽  
Cell Disease ◽  
Vessel Occlusion ◽  
Feasibility Assessment ◽  
Management Intervention ◽  
Scale Scores

Abstract Sickle cell disease (SCD) is an inherited hemoglobinopathy that leads to blood vessel occlusion and multiorgan complications, including pain, that may be experienced daily. Symptom management often begins at home, and tools are needed to support self-management strategies that can be implemented by children with SCD and families. The purpose of this study was to assess the feasibility of the mHealth self-management intervention (application) Voice Crisis Alert V2 for children with SCD and families. Feasibility assessment was guided by the Reach, Efficacy, Adoption, Implementation, and Maintenance framework. Data were collected with 60 dyads (children with SCD/caregivers) at four time points. Self-management data were collected via application use, and postintervention interviews were conducted. Analyses included descriptive statistics and constant comparison with directed content analysis. Recruitment was completed in 28 weeks, with 82% retention at end-of-intervention. Mobile Application Rating Scale scores and interview data indicated high satisfaction. From baseline to mid-intervention, 94% of dyads used the application (75% of total use); 45% used the application from mid-intervention to the end-of-intervention. Dyads made 2,384 actions in the application; the most commonly used features were recording health history and recording and tracking symptoms. Few reported issues with the application; most issues occurred early in the study and were corrected. After the intervention period was completed, 37% continued to use the application. Feasibility was confirmed by meeting recruitment and retention goals, high adoption of the application, and high reported satisfaction with the application. Challenges with sustained use were encountered, and areas for improvement were identified.

scholarly journals Validity and Reliability of Sickle Cell Self-efficacy Scale

2014 ◽  
Vol 8 (4) ◽  
pp. 31-35
Author(s):  
Sheyda Javadipour ◽  
Shiva Javadipour ◽  
Bijan Keikhaeidehdezi ◽  
Meymanat Akbari
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Research Center ◽  
Cell Disease ◽  
Validity And Reliability ◽  
Medical Sciences ◽  
Functional Activities ◽  
Rehabilitation Research ◽  
The Relationship

Correction: On 20/08/2014 the spelling of the third author was changed from Bijan Keykhah DehdeziTO Bijan Keikhaeidehdezi.Correction: On 20/08/2014 the affiliation of the first author was changed fromMusculoskeletal Rehabilitation Research Center, Jundishapur University of Medical Sciences of Ahvaz, IranTO Musculoskeletal Rehabilitation Research Center, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran Abstract:Background: psychometric properties of a 9-item self-appraisal scale for studying self-efficacy in sickle cell disease was evaluated in order to survey people’s comprehension of their capabilities to be engaged in functional activities of daily living who were suffering from sickle cell disease and in order to manage syndromes.Methods: the participants of this study were aged between 11-19 years with sickle cell disease under treatment for at least one year.Result: reliability analysis showed the internal consistency and correlation coefficient of the scale to be acceptable values. Construct validity analysis showed moderate positive correlation between the scores obtained using Sickle Cell Self-Efficacy Scale and those obtained using Mental Components Scale of SF36. There is a weak correlation between the score obtained from SCSES and that of Physical Components Scale of SF36.Conclusion: this scale can be used in the future for future studies on self-efficacy and also to find the relationship between this component and other components.DOI: http://dx.doi.org/10.3126/ijls.v8i4.10931

scholarly journals Implementation of an Educational Intervention to Optimize Self-Management and Transition Readiness in Adolescents with Sickle Cell Disease

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 3536-3536
Author(s):  
Cecelia Calhoun ◽  
Regina Abel ◽  
Hai Anh Pham ◽  
Shomari Thompson ◽  
Allison A King
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Psychosocial Development ◽  
Sexual Development ◽  
Independent Living ◽  
Self Management ◽  
Cell Disease ◽  
Adult Care ◽  
Transition Readiness

Abstract Background: The transition from the pediatric setting to adult care is a challenge for many adolescents with chronic disease. Patients with sickle cell disease (SCD) represent a unique cohort as the timing of psychosocial development of adolescence often coincides with worsening end organ damage. Previously, we used the Adolescent Autonomy Checklist (AAC) modified to include SCD specific tasks that patients with SCD need to practice in order to transition to adult healthcare and independent living. This study sought to use the AAC to measure the effects of skill based educational handouts on improving self-management and transition readiness in adolescents with SCD. Methods: This was a single center, retrospective study approved by the Washington University Institutional Review Board. Inclusion criteria were patients with SCD, age 13-21 years, and completion of pre and post assessments. As standard care, patients from a pediatric hematology clinic completed the AAC-SCD. The AAC-SCD assesses skill level in twelve domains (Table). The tool includes 100 items, and users check "can do already" or "needs practice" for each item. After review with the coordinator, participants were given skill-based handouts based on up to five noted deficits. Patients completed the AAC-SCD at the subsequent clinic visit. In addition to baseline and follow up AAC-SCD data, medical and demographic data were collected via chart abstraction. All data were entered into SPSS for statistical analysis, including descriptives, paired sample T-tests, and bivariate Pearson's correlations. Results: A total of 61 patients completed baseline and follow up. Of those participants, 49.2% were female. The mean age was 15.4 (+ 2.2) years. The genotypic distribution was as follows: 67.2% HbSS, 19.7% HbSC, 3.3% HbS-beta-thal+ and 9.8% HbS-beta-thal0. The majority of patients received healthcare coverage via Medicaid (52.5%), private insurance (45.6%) and 1.6% had no insurance coverage. Twenty-five patients (42.0 %) had a history of stroke or silent cerebral infarct and 34 (55.7%) were currently taking or were previously prescribed hydroxyurea. Formal academic support (IEP or 504 Plan) was reported for 20 (32.8%) of patients. At baseline, patients needed the most help with skills in the kitchen, housekeeping, personal care and leisure. Statistically significant improvements (p< 0.05) occurred in skills related to laundry, housekeeping, healthcare, sexual development and living arrangements. Modest sized and statistically significant correlation between the receipt of the educational handouts and decreased number of items marked "needs help" occurred in the areas of money management (r=-0.27, p=0.044), vocational skills (r=-0.27, p=0.046;) and laundry (r=0.32, p=0.015). A post hoc analysis by age groups 13-15 (n= 34),16-18 (n=24) and 19-21 (n=3) showed a decreased amount of items marked "needs help" in the areas of sexual development for both 13-15 year olds (r=0.42, p=0.024) and 16-18 year olds (r=0.93, p=0.001) as well. Conclusion: Transition skills improved over time among adolescents with SCD. While we cannot say for certain if gains in knowledge occur with age as development progresses or if a formal transition program can be credited, providing educational materials on transition related skills within a clinic setting was associated with significant improvements in three of the domains. Our preliminary data offers insight into what skill deficits may be most amenable to educational interventions based on age group. As is the case with medical management, the development of a multimodal intervention is needed to prepare adolescents with SCD to transition to adult care and independent living. Clinic based education is a simple intervention that could be one component of future approaches to transition. Disclosures No relevant conflicts of interest to declare.

scholarly journals Self‐Management Recommendations for Sickle Cell Disease: A Content Analysis of Websites

2020 ◽  
Author(s):  
Druye A Andrews ◽  
Nelson Katherine ◽  
Robinson Brian
Keyword(s):  
Content Analysis ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Qualitative Content Analysis ◽  
Preventive Health ◽  
Self Management ◽  
Cell Disease ◽  
Self Monitoring ◽  
Management Actions ◽  
Management Recommendations

This paper reports on the findings of a study designed to establish website-based self-management recommendations for sickle cell disease. Google and Yahoo search engines were used to search the World-Wide-Web. Purposive sampling was utilized to select 28 websites that met the inclusion criteria. Data were manually collected from health education materials and subjected to qualitative content analysis. Self-management was conceptualized as actions involving preventive health, self-monitoring, self-diagnosing, and self-treatment. The results show that the websites recommend more self-management actions for preventive health and self-treatment than for self-monitoring and self-diagnosis. Frequent oral fluid intake, limitation of overactivity, eating a healthy diet, avoiding extreme temperatures, and infections were the commonest preventive health recommendations. Daily pain monitoring and general bodily inspections were the most frequent self-monitoring recommendations. Commonly cited self-diagnostic indicators were fever, persistent pain, enlarged spleen, and leg ulcers. The use of analgesics and non-pharmacological measures were regularly cited for self-treatment. Most recommendations were assessed as clinically safe as they align with standards for sickle cell management. Nurses and other professionals should teach patients how to assess the credibility of websites. This article is protected by copyright. All rights reserved.

A Qualitative Analysis of Best Self-management Practices: Sickle Cell Disease

2010 ◽  
Vol 102 (11) ◽  
pp. 1033-1041 ◽  
Author(s):  
Paula Tanabe ◽  
Jerlym Porter ◽  
Melissa Creary ◽  
Eric Kirkwood ◽  
Shirley Miller ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Qualitative Analysis ◽  
Sickle Cell ◽  
Management Practices ◽  
Self Management ◽  
Cell Disease

Early Identification of Barriers and Facilitators to Self-Management Behaviors in Pediatric Patients With Sickle Cell Disease to Minimize Hematopoietic Cell Transplantation Complications

2018 ◽  
Vol 35 (3) ◽  
pp. 199-209 ◽  
Author(s):  
Ginny L. Schulz ◽  
Rebecca H. Foster ◽  
Valerie Kennedy Lang ◽  
Alison Towerman ◽  
Shalini Shenoy ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Cell Transplantation ◽  
Sickle Cell ◽  
Pediatric Patients ◽  
Hematopoietic Cell Transplantation ◽  
Hematopoietic Cell ◽  
Barriers And Facilitators ◽  
Self Management ◽  
Cell Disease ◽  
Management Behaviors

Hematopoietic cell transplantation (HCT) is an elective, curative treatment option for patients with sickle cell disease (SCD). Transplant requires extensive self-management behaviors to be successful. The purpose of this study was to describe potential barriers and facilitators to self-management in a group of pediatric patients with SCD prior to HCT and their medical outcomes post-HCT. A multiple case study approach was used to describe 4 pairs of transplant recipients grouped by age, donor type, and donor source. Each pair included a case with minimal and increased post-HCT complications. Complications included readmissions, graft-versus-host disease, systemic infections, and survival in the first year post-HCT. Variables were retrospectively collected and content analyzed to identify barriers and facilitators within and across pairs using existing self-management frameworks. While higher risk transplants experienced more complications, 3 of the 4 cases with increased complications had a larger number of modifiable barriers identified compared with those experiencing minimal complications. At least one modifiable barrier and multiple facilitators were identified in all cases. A standardized psychosocial assessment process with an established plan to mitigate barriers and promote facilitators to self-management is essential to optimize outcomes in patients with SCD undergoing elective HCT.

Health-Related Stigma, Social Support, Self-Efficacy, and Self-Care Actions Among Adults With Sickle Cell Disease in Oman

2021 ◽  
pp. 105477382110467
Author(s):  
Huda Al Raqaishi ◽  
Mohammad Al Qadire ◽  
Omar Alzaabi ◽  
Omar Al Omari
Keyword(s):  
Social Support ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Self Efficacy ◽  
Self Care ◽  
Care Seeking ◽  
Cell Disease ◽  
Cross Sectional ◽  
Related Stigma ◽  
Health Related

Stigma contributes to the burden of individuals and families affected by Sickle cell disease (SCD) and causes delay in appropriate care seeking. The aim of this study is to examine the levels and associations between stigma, social support, self-efficacy, and self-care actions among adult patients with SCD in Oman using a cross-sectional, correlational design. Of the 264 participants, 56.1% ( n = 148) were males, with mean age of 30.1 years ( SD 7.7). Half of the participants were married, and 88.3% had no other associated diseases. The results demonstrate that patients in Oman suffer from health-related stigma. However, social support, self-efficacy, and self-care actions were reported to be high and correlated with several clinical and demographic variables. Based on the results, effective, low-cost interventions such as psycho-educational groups, individual counseling, or group therapies might be developed. They can promote belief in enhanced efficacy and improved SCD adaptation, thereby increasing patient, and provider satisfaction.

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