scholarly journals Self management strategies for people with sickle cell disease in Ghana

2021 ◽  
Author(s):  
◽  
Andrews Adjei Druye
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Professionals ◽  
Best Practice ◽  
Management Strategies ◽  
Preventive Health ◽  
Self Management ◽  
Sequential Data ◽  
Cell Disease ◽  
Management Actions

<p>Sickle cell disease (SCD) is the commonest inherited haemoglobinopathy worldwide. Although it is a chronic disease, there is presently no international best practice for self-management of SCD. This exploratory sequential mix-methods study was designed to describe the self-management strategies utilised and their effectiveness for persons with SCD in Ghana. Self-management was conceptualised as actions that concerned preventive health, self-monitoring, self-diagnosing, self-treatment and self-evaluation. A four-stage sequential data collection and analysis process was used. Methods included website review, key informant interviews and surveys. The website review extracted from publically available websites the advice provided to people with SCD regarding keeping well, minimising the development of complications and managing complications. Health professional (n=9) interviews concerned self-management advice and the experiences patients shared of their self-management. Patients with SCD (n=9) and parents of children with SCD (n=10) interviews captured their experiences of self-management; and 112 patients (≥ 16 years) and 201 parents of children (≤15 years) were surveyed about their self-management strategies. Analysis used descriptive and inferential statistics and content and thematic techniques. Patients and parents reported that despite receiving limited clinical advice on self-management they undertook at least one self-management action daily. Most patients reported using multiple strategies; preventive health and maintenance actions were the commonest. Whilst most actions were directed at pain, patients and parents also outlined strategies for managing problems such as fever, leg ulcers, anaemia, priapism, abdominal swelling, jaundice, and hip pain. Most self-management actions were clinically safe, however several unsafe actions identified could pose health risks to patients. Overall, parents tended to be more frequent users of self-management actions for their children than the adults were for themselves. Apart from being an adult or child, self-management was not significantly influenced by key vulnerabilities and contextual factors. Although, many patients and parents had tried traditional practices, most only utilised recommendations from health professionals. Most patients and parents had rated the quality their or their child’s quality of life as good. There is a need for the development of an international, evidenced-informed approach to self-management of SCD. The Ministry of Health, health professionals and the Sickle Cell Association of Ghana could work collectively on this to ensure a culturally appropriate and economically viable approach is developed and implemented.</p>

scholarly journals Self management strategies for people with sickle cell disease in Ghana

2021 ◽  
Author(s):  
◽  
Andrews Adjei Druye
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Professionals ◽  
Best Practice ◽  
Management Strategies ◽  
Preventive Health ◽  
Self Management ◽  
Sequential Data ◽  
Cell Disease ◽  
Management Actions

<p>Sickle cell disease (SCD) is the commonest inherited haemoglobinopathy worldwide. Although it is a chronic disease, there is presently no international best practice for self-management of SCD. This exploratory sequential mix-methods study was designed to describe the self-management strategies utilised and their effectiveness for persons with SCD in Ghana. Self-management was conceptualised as actions that concerned preventive health, self-monitoring, self-diagnosing, self-treatment and self-evaluation. A four-stage sequential data collection and analysis process was used. Methods included website review, key informant interviews and surveys. The website review extracted from publically available websites the advice provided to people with SCD regarding keeping well, minimising the development of complications and managing complications. Health professional (n=9) interviews concerned self-management advice and the experiences patients shared of their self-management. Patients with SCD (n=9) and parents of children with SCD (n=10) interviews captured their experiences of self-management; and 112 patients (≥ 16 years) and 201 parents of children (≤15 years) were surveyed about their self-management strategies. Analysis used descriptive and inferential statistics and content and thematic techniques. Patients and parents reported that despite receiving limited clinical advice on self-management they undertook at least one self-management action daily. Most patients reported using multiple strategies; preventive health and maintenance actions were the commonest. Whilst most actions were directed at pain, patients and parents also outlined strategies for managing problems such as fever, leg ulcers, anaemia, priapism, abdominal swelling, jaundice, and hip pain. Most self-management actions were clinically safe, however several unsafe actions identified could pose health risks to patients. Overall, parents tended to be more frequent users of self-management actions for their children than the adults were for themselves. Apart from being an adult or child, self-management was not significantly influenced by key vulnerabilities and contextual factors. Although, many patients and parents had tried traditional practices, most only utilised recommendations from health professionals. Most patients and parents had rated the quality their or their child’s quality of life as good. There is a need for the development of an international, evidenced-informed approach to self-management of SCD. The Ministry of Health, health professionals and the Sickle Cell Association of Ghana could work collectively on this to ensure a culturally appropriate and economically viable approach is developed and implemented.</p>

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.

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

2020 ◽  
Author(s):  
Druye A Andrews ◽  
Brian Robinson ◽  
Katherine Nelson
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.

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

2020 ◽  
Author(s):  
Druye A Andrews ◽  
Brian Robinson ◽  
Katherine Nelson
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.

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.

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 Assessment of Impact of a mHealth Self-Management Intervention for Children with Sickle Cell Disease

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 11-12
Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Kenneth Ruggiero ◽  
Teresa Kelechi
Keyword(s):  
Sickle Cell Disease ◽  
Board Of Directors ◽  
Sickle Cell ◽  
Management Strategies ◽  
Pain Interference ◽  
Self Management ◽  
Cell Disease ◽  
Post Intervention ◽  
Advisory Committees ◽  
Crisis Care

Introduction: Children with sickle cell disease (SCD) frequently experience pain beginning in early childhood progressing throughout the lifespan. SCD-related pain during childhood is associated with decreased physical, psychological, social, and quality of life (QOL) outcomes. As a chronic, multi-organ condition, treatment for SCD may require complicated preventive health and acute treatment regimens necessitating development of self-management strategies for children and their families. mHealth may be an ideal mechanism for implementation of self-management strategies. A mHealth self-management intervention was developed with an end-user-based approach (Voice Crisis Alert V2) and guided by the Pediatric Self-Management model. Initial feasibility testing was conducted. This abstract describes preliminary impacts of the Voice Crisis Alert V2 intervention on symptoms and QOL. Methods: The characteristics and names of application (app) components such as "Crisis Care" and "I'm in Pain" are outlined in Table 1. Targeted sample size was 60 dyads of children with SCD up to age 18 and the parent/caregiver. For assessment of impact, data sources included app use, child and parent/caregiver surveys at baseline, mid-intervention, end-of intervention and post-intervention. Survey instruments included the PROMIS SF for anxiety, fatigue, depressive symptoms, pain interference, pain intensity and sleep disturbance, and the PedsQL and Sickle Cell Disease Module (SCDM) for health-related quality of life (HRQOL). Data analysis was conducted using descriptive statistics, t-tests, Wilcoxon Signed Rank test, and Spearman's rho. Independent variables were number of times and length of time (minutes) using the app and individual app components. Dependent variables were pre-post differences in scores for total PedQL, school functioning, total SCDM, and subscales: pain and hurt, pain intensity, pain management, and treatments. Results are reported with 95% CIs. Results: The most substantial pre- to post-intervention differences in symptoms and QOL scores were noted in children ages 8 - 17. Pre-post-intervention differences in scores demonstrated improvement for all symptoms outcomes except anxiety, with clinically significant improvements in depressive symptoms, fatigue, and pain interference. Improvement in total scores and all subscale scores on the PedsQL and SCDM instruments were also noted from pre- to post-intervention. The majority of correlations had CIs that crossed zero, indicating either negative or positive associations may be observed in the population. Thus, overall, frequency and length of app use was not correlated with degree of improvement in outcomes. Negative correlations were observed between the number of times the Crisis Care component was used and treatment score (rs = -.46, 95% CI [-.75, -.00]), the number of minutes the Crisis Care component was used and the treatment score (rs = -.54, 95% CI [-.80, -.11]), and the number of minutes the Crisis Care component was used and the total SCDM score (rs = -.48, 95% CI [-.77, -.03]). These correlations suggest more frequent and longer use of the Crisis Care component was associated with less substantial improvement in SCDM total score and treatments score. Conclusions: Greater improvement in scores for children ages 8 - 17 compared to children less than 8 years suggests the intervention may be particularly useful in older children with SCD. Changes in scores from pre- to post-intervention and their CIs suggest intervention use may lead to improvement in the following domains: fatigue, pain interference, HRQOL, physical functioning, social functioning, pain and hurt, pain impact, pain management, and treatments. While improvements in scores from pre- to post-intervention were noted in nearly all areas, few meaningful correlations were observed between app use and differences in outcome scores. Improvement in symptoms and QOL outcomes may be attributable to individual characteristics, such as disease severity, or the amount and type of app use required to develop self-management skills may be individualized. Sample sizes were small and future efficacy testing is warranted with a larger sample. Disclosures Kanter: AGIOS: Membership on an entity's Board of Directors or advisory committees; BEAM: Membership on an entity's Board of Directors or advisory committees; NHLBI Sickle Cell Advisory Board: Membership on an entity's Board of Directors or advisory committees; SCDAA Medical and Research Advisory Board: Membership on an entity's Board of Directors or advisory committees; Cowen: Honoraria; Wells Fargo: Honoraria; bluebird bio, inc: Consultancy, Honoraria; Novartis: Consultancy; Sanofi: Consultancy; Medscape: Honoraria; Guidepoint Global: Honoraria; GLG: Honoraria; Jeffries: Honoraria.

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