Noke et al.2525 Noke M, Peters S, Wearden A, Ulph F. A qualitative study to explore how professionals in the United Kingdom make decisions to test children for a sickle cell carrier status. Eur J Human Genetics 2016; 24:164-170.
|
2016 |
United Kingdom |
Health professionals |
Patterson et al.4141 Patterson CA, Chavez V, Mondestin V, Deatrick J, Li Y, Barakat LP. Clinical trial decision making in pedriatric sickle cell disease: a qualitative study of perceived benefits and barriers to participation. J Pediatr Hematol Oncol 2015; 37(6):415-422.
|
2015 |
United States |
Participation in research |
Marsh et al.2323 Marsh V, Kombe F, Fitzpatrick R, Molyneux S, Parker M. Managing misaligned paternity findings in research including sickle cell disease screening in Kenya: 'Consulting communities' to inform policy. Soc Sci Med 2013; 96:192-199
|
2013 |
United Kingdom |
Health professionals |
Silva et al.2828 Silva AH, Bellato R, Araújo LFS. Cotidiano da família que experiencia a condição crônica por anemia falciforme. Rev Eletr Enf 2013;15(2):437-446.
|
2013 |
Brazil |
Illness experience |
Lebensburger et al.4242 Lebensburger JD, Sidonio RF, DeBaun MR, Safford MM, Howard TH, Scarinci IC. Exploring barriers and facilitators to clinical trial enrollment in the contexto of sickle cell anemia and hydroxyrea. Pediatr Blood Cancer 2013; 60:1333-1337.
|
2013 |
United States |
Participation in research |
Jones e Broome5050 Jones FC, Broome ME. Focus groups with african american adolescentes: Enhancing recruitment and retention in intervention studies. J Pediatr Nurs 2001; 16(2):88-95.
|
2001 |
United States |
Participation in research/Autonomy of cohabitants and decision-making |
Daulton2929 Doulton DM. From cradle to commencement: Transitioning pediatric sickle cell disease patients to adult providers. J Pediatr Nurs 2010; 27(2):119-123.
|
2010 |
United States |
Illness experience |
Reed3939 Reed K. 'He's the dad isn't he?' Gender, race and the politics of prenatal screening. Ethn Health 2011; 16(4-5):327-341.
|
2011 |
United Kingdom |
Illness experience |
Marsh et al.2424 Marsh V, Kombe F, Firzpatrick R, Williams TN, Parker M, Molyneux S. Consulting communities on feeback of genetic findings in international health research: sharing sickle cell disease and carrier information in coastal Kenya. BMC Medical Ethics 2013; 14:41.
|
2013 |
Kenya / United States |
Health professionals |
Fry3838 Fry PH. O significado da anemia falciforme no contexto da política racial do governo brasileiro 1995-2004. Hist Cien Saude-Manguinhos 2005; 12(2):347-370.
|
2005 |
Brazil |
Illness experience |
Tsianakas et al.2626 Tsianakas V, Calnan M, Atkin K, Dormandy E, Marteau M. Offering antenatal sickle cell and thalassaemia screening to pregnant women in primary care: a qualitative study of GP´s experiences. Br J General Practice 2010; 60(580):822-828.
|
2010 |
United Kingdom |
Health professionals |
Benjamin4343 Benjamin R. Organized ambivalence: when sickle cell disease and stem cell research converge, Ethnicity Health 2011; 16(4-5):447-463.
|
2011 |
United States |
Participation in research |
Liem et al.4444 Liem RI, Cole AH, Pelligra AS, Mason M, Thompson AA. Parental atitudes toward research participation in pedriatric sickle cell disease. Pediatr Blood Cancer 2010; 55:129-133.
|
2010 |
United States |
Participation in research |
Lattimer4040 Lattimer L. Problematic hospital experiences among adult patients with sickle cell disease. J Health Care Poor Underserved 2010; 21(4):1114-1123.
|
2010 |
United States |
Illness experience/Autonomy of cohabitants and decision-making |
Bakshi et al.2727 Bakshi N, Sinha CB, Ross D, Khemani K, Loewenstein G, Krishnamurti L. Proponent or collaborative: Physician perspectives and approaches to disease modifying therapies in sickle cell disease. PLoS ONE 2017;12(7):e0178413.
|
2017 |
United States |
Health professionals |
Hankins4545 Hankins J. Should my child participate in this research study? Pediatr Blood Cancer 2010; 55:12-13.
|
2010 |
United States |
Participation in research |
Hassel et al.4646 Hassell K, Pace B, Wang W, Kulkarni R, Luban N, Johnson CS, Eckman J, Lane P, Woods WG. Sickle cell disease summit: From clinical and research disparity to action. Am J Hematol 2008; 84(1):39-45.
|
2008 |
United States |
Participation in research/Autonomy of cohabitants and decision-making |
Willen et al.3030 Willen SM, Thornburg CD, Lantos PM. The traveler with sickle cell disease. J Travel Med 2014; 21(5):332-339.
|
2014 |
United States |
Illness experience |
Hankins et al.4848 Hankins J, Hinds P, Day S, Carroll Y, Li C, Garvie P, Wang W. Therapy preference and decision-making among patients with severe sickle cell anemia and their families. Pediatr Blood Cancer 2007; 48:705-710.
|
2007 |
United States |
Autonomy of cohabitants and decision-making |
Knopf et al.4949 Knopf JM, Hornung RW, Slap GB, DeVellis RF, Britto MT. Views of treatment decision making from adolescentes with chronic illnesses and their parentes: a piloty study. Health Expectations 2008;11:343-354.
|
2008 |
United States |
Autonomy of cohabitants and decision-making |