ArticleJournal of advanced nursing2016
Perceptions of young adults with sickle cell disease concerning their disease experience.
Article in Journal of advanced nursing, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
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Who cites it
23 citing papers in PubMed, 1 synthesis or guideline pooled it, 48 citations in OpenAlex.
- Stigma of Sickle Cell Disease: A Systematic Review.Issues in mental health nursing · 2018Pooled it
- Barriers to sickle cell disease care: a biopsychosocial analysis mapped to the standards of care guidelines by the sickle pan African research consortium.Journal of public health (Oxford, England) · 2026Article
- What are the symptoms and concerns of young adults living with life-limiting conditions and how well are they captured by patient reported outcome measures? A mixed-methods systematic review and framework synthesis.Palliative medicine · 2026Review
- "Her hospital card is missing": a qualitative investigation into the facilitators of and barriers to formal healthcare use among sickle cell patients in Ghana.BMC primary care · 2025Article
- Hydroxyurea utilization among individuals with sickle cell disease in Tennessee: a pooled analysis of claims data.Frontiers in pharmacology · 2025Article
- Improving access to healthcare services for sickle cell disease patients in Nigeria: perspectives and views of healthcare professionals.Frontiers in health services · 2025Article
- Article
- Experiences with healthcare navigation and bias among adult women with sickle cell disease: a qualitative study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Access to healthcare for people with sickle cell disease: Views of healthcare professionals on policies and practices.Molecular genetics & genomic medicine · 2023Article
- Not Just a Pain: A Medical Simulation Case About Biased Communication and Osteomyelitis in Pediatric Sickle Cell Anemia.MedEdPORTAL : the journal of teaching and learning resources · 2023Review
- "Into the Lion's Den": COVID-19 Experiences of Black Adults with Sickle Cell Disease.Qualitative health research · 2022Article
- [Socio-demographic and economic profile of adult patients with sickle cell disease followed up on a regular basis at the University Hospital Center of Libreville].The Pan African medical journal · 2022Article
- Article
- A "pretty normal" life: a qualitative study exploring young people's experience of life with bronchiectasis.International journal of qualitative studies on health and well-being · 2021Article
- Preferences for Using a Mobile App in Sickle Cell Disease Self-management: Descriptive Qualitative Study.JMIR formative research · 2021Article
- Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers.Health and quality of life outcomes · 2021Article
- Perspectives on life participation by young adults with chronic kidney disease: an interview study.BMJ open · 2020Article
- Emergency Department Utilization for Patients Living With Sickle Cell Disease: Psychosocial Predictors of Health Care Behaviors.Annals of emergency medicine · 2020Article
- Patient Work and Their Contexts: Scoping Review.Journal of medical Internet research · 2020Article
- The relationship between frequency and severity of vaso-occlusive crises and health-related quality of life and work productivity in adults with sickle cell disease.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
aimTo describe the perceptions of young adults with sickle cell disease concerning their disease experience.
backgroundSickle cell disease is a lifelong, genetic condition with both acute and chronic painful exacerbations. Little is known of the experiences of young adults with sickle cell disease.
designThis study used a qualitative, descriptive design with semi-structured, life review interviews.
methodsBetween August 2010-September 2012, purposive sampling was used to recruit participants with a known sickle cell disease diagnosis who were ages 18-35 years, were being seen in an outpatient sickle cell clinic and were English speaking. Participants provided demographic information and responded to two interviews. A content analysis was then used to interpret participants' narratives of their experiences of living with sickle cell disease. RESULTS/
findingsA sample of 29 young adults with sickle cell disease consisted of 79·3% females, 35·6% employed full-time or part-time, 71·6% single/never married and 57·8% with sickle cell anaemia. Their mean age was 25·8 with 13·2 years of education. Four major interview themes were identified: (1) struggles to maintain or achieve good quality of life or life satisfactions; (2) strategies to maintain self-care; (3) interruptions to family, work and social roles; and (4) difficulties accessing needed health care.
conclusionYoung adults face many challenges while living with sickle cell disease. With a better understanding of their disease experience and how it influences their quality of life, researchers can begin tailoring appropriate interventions to improve health outcomes in this vulnerable, minority population.
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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.