ArticleJournal of sickle cell disease and hemoglobinopathies2017
Understanding the Self-Management Practices of Young Adults with Sickle Cell Disease.
Article in Journal of sickle cell disease and hemoglobinopathies, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04121247 (Nonpharmacological Approaches Used by Parents of Children With Sickle Cell Disease and the Effectiveness of Education Given to Nonpharmacological Approaches), which is not on this map. Cited by 7 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Nonpharmacological Approaches Used by Parents of Children With Sickle Cell Disease and the Effectiveness of Education Given to Nonpharmacological Approaches
Who cites it
7 citing papers in PubMed, 8 citations in OpenAlex.
- Assessing current non-pharmacologic pain management practices for sickle cell disease in adults.Frontiers in pain research (Lausanne, Switzerland) · 2026Article
- Self-Management for Youth Living with Sickle Cell Disease (SMYLS): A study protocol for a multisite randomized controlled trial testing a behavioral, mHealth app.Contemporary clinical trials · 2025Article
- Sickle cell disease and adolescents' perspectives on self-care management resources.Health care transitions · 2023Article
- "Into the Lion's Den": COVID-19 Experiences of Black Adults with Sickle Cell Disease.Qualitative health research · 2022Article
- Lived Experiences of Adults with Sickle Cell Disease: A Qualitative Study, Dar es Salaam, Tanzania.The East African health research journal · 2022Article
- A Qualitative Study of Chronic Pain and Self-Management in Adults with Sickle Cell Disease.Journal of the National Medical Association · 2019Article
- Prevalence and predictors of chronic pain intensity and disability among adults with sickle cell disease.Health psychology openArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 2 institutions in 1 country.
Funding
Abstract
Because self-management is central to sickle cell disease (SCD) management, this descriptive study of 18 young adults with SCD, ages 19-39, was conducted to understand their pain experience and to identify the specific home activities they use for pain prevention and management prior to care-seeking. Participants completed two baseline surveys and one semi-structured, individual interview. Content analysis of the interview transcripts yielded two themes: difficulty in describing pain and living with pain. Participants used pharmacological and non-pharmacological strategies to alleviate pain and avoid disease complications but report barriers to using these strategies. Healthcare providers should use study findings to provide appropriate care to and improve pain outcomes for young adults with SCD. In addition, interventions aimed at addressing barriers and optimizing self-management are needed.
Identifiers
30505880PMC6269114W2989654895What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.