The lived experiences of adolescents with sickle cell disease in Kingston, Jamaica

Forrester, Andrea Brown; Barton-Gooden, Antoinette; Pitter, Cynthia; Lindo, Jascinth

doi:10.3402/qhw.v10.28104

Cited by 28 publications

(61 citation statements)

References 44 publications

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“…As no study has reported self‐management recommendations from the perspectives from health professionals, there are no studies to provide comparison with the current findings. However, the findings for preventive health are similar to research findings on self‐management recommendations and practices from patients and relatives' perspectives in the United States, Brazil, and Jamaica, as well as recommended measures for healthy living and crisis prevention for SCD management …”

Section: Discussionsupporting

confidence: 77%

“…However, the findings for preventive health are similar to research findings on self-management recommendations and practices from patients and relatives' perspectives in the United States, Brazil, and Jamaica, as well as recommended measures for healthy living and crisis prevention for SCD management. 3,5,7,[38][39][40]47,48 The findings indicate that recommendations for self-monitoring and diagnosis, using objective methods and measurements such as thermometers, splenic palpation, and self-assessment tools, are limited in the Ghanaian health professionals' recommendations. In contrast, researchers of SCD self-management in the United States have focused on objective measurements for pain self-monitoring to understand pain frequency, characteristics, related symptoms, and home management.…”

Section: Discussionmentioning

confidence: 99%

“…Internationally, SCD self‐management research has generally been conducted among patients and little has been done to elicit the perspectives of health professionals. Currently, no internationally agreed best practice standards have been published to guide health professionals to support SCD self‐management.…”

Section: Introductionmentioning

confidence: 99%

“…[20][21][22] Effective support by health professionals optimises patients' self-management, thereby contributing to improvements in patients' health outcomes, the rational use of health resources, and a reduction in health care costs for LTCs such as SCD. 23,24 Internationally, SCD self-management research has generally been conducted among patients [25][26][27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42] and little has been done to elicit the perspectives of health professionals. Currently, no internationally agreed best practice standards have been published to guide health professionals to support SCD self-management.…”

mentioning

confidence: 99%

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Self‐management recommendations for sickle cell disease: A Ghanaian health professionals' perspective

Druye

Robinson

Nelson

2018

Health Science Reports

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ObjectiveTo describe self‐management recommendations for sickle cell disease (SCD) care among health professionals who manage SCD in Ghana.MethodNine health care professionals (nurses, doctors, and physician assistants) who work in SCD were interviewed. The semistructured interviews were recorded, transcribed, and analysed using the qualitative content analysis method. Self‐management recommendations were conceptualised as preventive health, self‐monitoring, self‐diagnosis, self‐treatment, and self‐evaluation.ResultsPreventive health recommendations were the commonest, where the professionals described similar topics including avoidance of cold temperature, frequent oral hydration, and healthy nutrition. Self‐monitoring recommendations included regular checks for pallor, urine colour, and splenic enlargement. Self‐diagnosis recommendations were captured as warning signs and included pain, fever, unusual feelings, and enlarged spleen. Pain and fever management were the focus of most self‐treatment advice, and there were some self‐treatment recommendations for dactylitis, anaemia, and priapism. There was considerable variation in the strategies recommended for the management of individual SCD‐related problems.ConclusionGhanaian health professionals involved in SCD care provide limited and inconsistent self‐management recommendations. There is a need for the development of SCD standards and guidelines that support effective self‐management. Health professionals working in SCD require continuing education in self‐management.

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Section: Discussionsupporting

confidence: 77%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

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Self‐management recommendations for sickle cell disease: A Ghanaian health professionals' perspective

Druye

Robinson

Nelson

2018

Health Science Reports

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“…93, 94 53,68,70,104,105,108-112 Symptoms become more of a concern when they lead to physical and mental changes or affect the ability of young people to engage in daily activities. 47,54,63,66,81,104,108,109,113…”

Section: Physical Symptoms and Concernsmentioning

confidence: 99%

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Namisango

Bristowe

Allsop

et al. 2018

Patient

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Background: The design and provision of quality paediatric palliative care should prioritize issues that matter to children and their families, for optimal outcomes. Aim: This review aims to identify symptoms concerns and outcomes, that matter to children and young development of a relevant framework of health outcomes. Study Design: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources: Data sources such as PsychINFO, Medline, EMBASE, CINAHL, OpenGrey, and Science Direct Journals have been searched from 1 August 2016 to 30th July 2017. The study also incorporates consultations with experts in the field, citation searchers via Scopus, and a hand search for reference lists of included studies. Results: Out of the 13,567 articles that have been evaluated, 81 studies were included. Of these, (n=68) are from high-income countries and (n=58) are cancer patients studies. A total of 3,236 young people, 2,103 family carers, 108 families, and 901 healthcare providers are included in the studies. Young people have not contributed to data in 30% of studies. Themes on priority concerns are presented by domain and health outcome; for example, 1) Physical (n=62 studies); e.g. physical symptoms, 2) psychological (n=65); e.g. worry 3) psycho-social (n=31); e.g. relationships, 4) existential Conclusion: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory, so paediatric palliative care should not be limited to the end of life phase. A child-family centred framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future

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Examining Mental Health, Education, Employment, and Pain in Sickle Cell Disease

et al. 2023

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ImportancePain related to sickle cell disease (SCD) is complex and associated with social determinants of health. Emotional and stress-related effects of SCD impact daily quality of life and the frequency and severity of pain.ObjectiveTo explore the association of educational attainment, employment status, and mental health with pain episode frequency and severity among individuals with SCD.Design, Setting, and ParticipantsThis is a cross-sectional analysis of patient registry data collected at baseline (2017-2018) from patients treated at 8 sites of the US Sickle Cell Disease Implementation Consortium. Data analysis was performed from September 2020 to March 2022.Main Outcomes and MeasuresElectronic medical record abstraction and a participant survey provided demographic data, mental health diagnosis, and Adult Sickle Cell Quality of Life Measurement Information System pain scores. Multivariable regression was used to examine the associations of education, employment, and mental health with the main outcomes (pain frequency and pain severity).ResultsThe study enrolled a total of 2264 participants aged 15 to 45 years (mean [SD] age, 27.9 [7.9] years; 1272 female participants [56.2%]) with SCD. Nearly one-half of the participant sample reported taking daily pain medication (1057 participants [47.0%]) and/or hydroxyurea use (1091 participants [49.2%]), 627 participants (28.0%) received regular blood transfusion, 457 (20.0%) had a depression diagnosis confirmed by medical record abstraction, 1789 (79.8%) reported severe pain (rated most recent pain crises as ≥7 out of 10), and 1078 (47.8%) reported more than 4 pain episodes in the prior 12 months. The mean (SD) pain frequency and severity t scores for the sample were 48.6 (11.4) and 50.3 (10.1), respectively. Educational attainment and income were not associated with increased pain frequency or severity. Unemployment (β, 2.13; 95% CI, 0.99 to 3.23; P &lt; .001) and female sex (β, 1.78; 95% CI, 0.80 to 2.76; P &lt; .001) were associated with increased pain frequency. Age younger than 18 years was inversely associated with pain frequency (β, −5.72; 95% CI, −7.72 to −3.72; P &lt; .001) and pain severity (β, 5.10; 95% CI, −6.70 to −3.51; P &lt; .001). Depression was associated with increased pain frequency (β, 2.18; 95% CI, 1.04 to 3.31; P &lt; .001) but not pain severity. Hydroxyurea use was associated with increased pain severity (β, 1.36; 95% CI, 0.47 to 2.24; P = .003), and daily use of pain medication was associated with both increased pain frequency (β, 6.29; 95% CI, 5.28 to 7.31; P &lt; .001) and pain severity (β, 2.87; 95% CI, 1.95 to 3.80; P &lt; .001).Conclusions and RelevanceThese findings suggest that employment status, sex, age, and depression are associated with pain frequency among patients with SCD. Depression screening for these patients is warranted, especially among those experiencing higher pain frequency and severity. Comprehensive treatment and pain reduction must consider the full experiences of patients with SCD, including impacts on mental health.

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The lived experiences of adolescents with sickle cell disease in Kingston, Jamaica

Cited by 28 publications

References 44 publications

Self‐management recommendations for sickle cell disease: A Ghanaian health professionals' perspective

Self‐management recommendations for sickle cell disease: A Ghanaian health professionals' perspective

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Examining Mental Health, Education, Employment, and Pain in Sickle Cell Disease

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