Managing sickle cell disease

Gill, Valerie; Lavin, Joanne; Sim, M

doi:10.1097/01.nme.0000388522.79370.d2

Cited by 4 publications

(5 citation statements)

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“…Existing recommendations for SCD management in textbooks and protocols present limited information on patients' responsibilities that reflect self-management, rather they mostly focus on clinical prevention such as immunization and screening for complications, and advice that health professionals should provide to patients for healthy living (Chakravorty & Williams, 2015;Gill et al, 2010;National Heart Lung & Blood Institute, 2014). Often, patients' responsibilities for self-management relate to acute pain with limited recommendations for managing other complications such as chronic pain, fever, leg ulcers, and splenic enlargement.…”

Section: Accepted Articlementioning

confidence: 99%

“…Despite the recognition of the importance of self‐management to SCD (Chakravorty & Williams, 2015; Gill, Lavin, & Sim, 2010), there are limited publications on the application of evidence‐based self‐management programs for SCD. A recently published self‐care kit for SCD by the Centers for Disease Control and Prevention (CDC) mainly focuses on how patients should organize their medical information and interact with health professionals (CDC, n.d.).…”

Section: Introductionmentioning

confidence: 99%

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Self‐management recommendations for sickle cell disease: A content analysis of websites

Druye

Nelson

Robinson

2020

Nursing & Health Sciences

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Section: Accepted Articlementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Self‐management recommendations for sickle cell disease: A content analysis of websites

Druye

Nelson

Robinson

2020

Nursing & Health Sciences

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“…Accepted Article self-management, health professionals should provide self-management support in the form of education and skills training, self-monitoring devices, and show them community networks that can offer additional support (Ministry of Health NZ, 2014;Ryan & Sawin, 2009). Despite the recognition of the importance of self-management to SCD (Chakravorty & Williams, 2015;Gill, Lavin, & Sim, 2010) there are limited publications on the application of evidence-based self-management programs for SCD. A recently published self-care kit for SCD by the Centre for Disease Control (CDC) mainly focuses on how patients should organize their medical information and interact with health professionals (CDC, n.d).…”

Section: Introductionmentioning

confidence: 99%

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

Andrews¹,

Robinson²,

Nelson³

2020

Preprint

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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.

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“…The nurses' role in SCD depends on whether they are SCD specialist or generalist, and whether the client is in the clinical or community setting [68]. The duties of the specialist nurse include initial assessment of patients in general haematology clinics, running nurse-led clinics, administering desferrioxamine (iron chelators), performing exchange blood transfusions, collecting essential data for the SCD database, maintaining the SCD patient register, and other nursing duties [102][103][104]. Countries such as US and UK have certified specialised SCD nurses [105].…”

Section: The Role Of the Nurse In Scd Managementmentioning

confidence: 99%

Self management strategies for people with sickle cell disease in Ghana

Druye¹

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<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>

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Managing sickle cell disease

Cited by 4 publications

References 1 publication

Self‐management recommendations for sickle cell disease: A content analysis of websites

Self‐management recommendations for sickle cell disease: A content analysis of websites

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

Self management strategies for people with sickle cell disease in Ghana

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