Stigma contributes to the burden of individuals and families affected by Sickle cell disease (SCD) and causes delay in appropriate care seeking. The aim of this study is to examine the levels and associations between stigma, social support, self-efficacy, and self-care actions among adult patients with SCD in Oman using a cross-sectional, correlational design. Of the 264 participants, 56.1% (n = 148) were males, with mean age of 30.1 years (SD 7.7). Half of the participants were married, and 88.3% had no other associated diseases. The results demonstrate that patients in Oman suffer from health-related stigma. However, social support, self-efficacy, and self-care actions were reported to be high and correlated with several clinical and demographic variables. Based on the results, effective, low-cost interventions such as psycho-educational groups, individual counseling, or group therapies might be developed. They can promote belief in enhanced efficacy and improved SCD adaptation, thereby increasing patient, and provider satisfaction.
AdeyemoT. A.OjewunmiO. O.Diaku-AkinwumiI. N.AyindeO. C.AkanmuA. S. (2015). Health related quality of life and perception of stigmatisation in adolescents living with sickle cell disease in Nigeria: A cross sectional study. Pediatric Blood & Cancer, 62(7), 1245–1251.
2.
AflakseirA.ColemanP. G. (2011). Initial development of the Iranian religious coping scale. Journal of Muslim Mental Health, 6(1), 44–61.
3.
AkhtarA.RahmanA.HusainM.ChaudhryI. B.DudduV.HusainN. (2010). Multidimensional scale of perceived social support: Psychometric properties in a South Asian population. Journal of Obstetrics and Gynaecology Research, 36(4), 845–851.
4.
Al-NasseriK.JosephJ.Al NasiriY.Al MawaliA.JacobE. (2019). Do young Omani adults with sickle cell disease experience stigma from having the disease?Iraq Medical Journal, 3(3), 62–66.
5.
AmrM.AminT.Al-OmairO. (2011). Health related quality of life among adolescents with sickle cell disease in Saudi Arabia. Pan African Medical Journal, 8(1), 1–16.
6.
AmuriM.MitchellS.CockcroftA.AnderssonN. (2011). Socio-economic status and HIV/AIDS stigma in Tanzania. AIDS Care, 23(3), 378–382.
7.
AntonF. (2009). Chronic stress and pain – A plea for a concerted research program. Pain, 143(3), 163–164.
8.
AsnaniM. R.QuimbyK. R.BennettN. R.FrancisD. K. (2016). Interventions for patients and caregivers to improve knowledge of sickle cell disease and recognition of its related complications. Cochrane Database of Systematic Reviews, 10, CD011175.
9.
BediakoS. M.LanzkronS.Diener-WestM.OnojobiG.BeachM. C.HaywoodCJr. (2016). The measure of sickle cell stigma: Initial findings from the improving patient outcomes through respect and trust study. Journal of Health Psychology, 21(5), 808–820.
10.
BediakoS. M.MoffittK. R. (2011). Race and social attitudes about sickle cell disease. Ethnicity & health, 16(4–5), 423–429.
11.
BergerB. E.FerransC. E.LashleyF. R. (2001). Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale. Research in Nursing & Health, 24(6), 518–529.
12.
BhattK.ReidM. E.LewisN. A.AsnaniM. R. (2011). Knowledge and health beliefs of Jamaican adolescents with sickle cell disease. Pediatric Blood & Cancer, 57(6), 1044–1048.
13.
BlakeA.AsnaniV.LegerR. R.HarrisJ.OdesinaV.HemmingsD. L.MorrisD. A.Knight-MaddenJ.WagnerL.AsnaniM. R. (2018). Stigma and illness uncertainty: Adding to the burden of sickle cell disease. Hematology, 23(2), 122–130.
14.
BulginD.TanabeP.JeneretteC. (2018). Stigma of sickle cell disease: A systematic review. Issues in Mental Health Nursing, 39(8), 675–686.
15.
CasertaT. A.Pirttilä-BackmanA.-M.PunamäkiR.-L. (2016). Stigma, marginalization and psychosocial well-being of orphans in Rwanda: Exploring the mediation role of social support. AIDS Care, 28(6), 736–744.
16.
Côbo VdeA.ChapadeiroC. A.RibeiroJ. B.Moraes-SouzaH.MartinsP. R. (2013). Sexuality and sickle cell anemia. Revista Brasileira de Hematologia e Hemoterapia, 35(2), 89–93.
17.
CreswellR. (2018). Modernism in translation. In HanssenJ. (Ed.), Arabic thought against the authoritarian age: Towards an intellectual history of the present (pp. 113–138). Cambridge University Press.
18.
CruzM.PincusH. A.HarmanJ. S.ReynoldsCf3rdPostE. P. (2008). Barriers to care-seeking for depressed African Americans. International Journal of Psychiatry in Medicine, 38(1), 71–80.
19.
DempsterR.DavisD. W.Faye JonesV.KeatingA.WildmanB. (2015). The role of stigma in parental help-seeking for perceived child behavior problems in urban, low-income African American parents. Journal of Clinical Psychology in Medical Settings, 22(4), 265–278.
20.
DerlegaV. J.JandaL. H.MirandaJ.ChenI. A.GoodmanB. M.IiiSmithW. (2014). How patients’ self-disclosure about sickle cell pain episodes to significant others relates to living with sickle cell disease. Pain Medicine, 15(9), 1496–1507.
21.
EarnshawV. A.QuinnD. M. (2012). The Impact of Stigma in Healthcare on People Living with Chronic Illnesses. Journal of Health Psychology, 17(2), 157–168.
22.
EdwardsR.TelfairJ.CecilH.LenociJ. (2000). Reliability and validity of a self-efficacy instrument specific to sickle cell disease. Behaviour Research and Therapy, 38(9), 951–963.
23.
EkerD.ArkarH. (1995). Perceived social support: Psychometric properties of the MSPSS in normal and pathological groups in a developing country. Social Psychiatry and Psychiatric Epidemiology, 30(3), 121–126.
24.
El-HazmiM. A.Al-HazmiA. M.WarsyA. S. (2011). Sickle cell disease in Middle East Arab countries. The Indian Journal of Medical Research, 134(5), 597–610. https://doi.org/10.4103/0971-5916.90984
25.
FischerP.AiA. L.AydinN.FreyD.HaslamS. A. (2010). The relationship between religious identity and preferred coping strategies: An examination of the relative importance of interpersonal and intrapersonal coping in Muslim and Christian faiths. Review of General Psychology, 14(4), 365–381.
26.
HarasemiwO.NewallN.MackenzieC. S.ShooshtariS.MenecV. (2019). Is the association between social network types, depressive symptoms and life satisfaction mediated by the perceived availability of social support? A cross-sectional analysis using the canadian longitudinal study on aging. Aging & Mental Health, 23(10), 1413–1422.
27.
HarrellJ. P.HallS.TaliaferroJ. (2003). Physiological responses to racism and discrimination: An assessment of the evidence. American Journal of Public Health, 93(2), 243–248.
28.
HaywoodC.LanzkronS.BediakoS.StrouseJ. J.HaythornthwaiteJ.CarrollC. P.Diener-WestM.OnojobiG.BeachM.C., & Import Investigators (2014). Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease. Journal of General Internal Medicine, 29(12), 1657–1662.
29.
HollowayB. M.McGillL. S.BediakoS. M. (2017). Depressive symptoms and sickle cell pain: The moderating role of internalized stigma. Stigma and Health, 2(4), 271–280.
30.
JeneretteC. M.BrewerC. (2010). Health-related stigma in young adults with sickle cell disease. Journal of the National Medical Association, 102(11), 1050–1055.
31.
JeneretteC. M.BrewerC.LeakA. N. (2011). Self-care recommendations of middle-aged and older adults with sickle cell disease. Nursing Research and Practice, 2011, 270594.
32.
JeneretteC. M.MurdaughC. (2008). Testing the theory of self-care management for sickle cell disease. Research in Nursing & Health, 31(4), 355–369.
33.
JeneretteC. M.ValrieC. R. (2010). The influence of maternal behaviors during childhood on self-efficacy in individuals with sickle cell disease. Journal of Family Nursing, 16(4), 422–434.
34.
LinkB. G.PhelanJ. C. (2006). Stigma and its public health implications. Lancet, 367(9509), 528–529.
35.
MartinS. R.CohenL. L.MougianisI.GriffinA.SilS.DampierC. (2018). Stigma and pain in adolescents hospitalized for sickle cell vasoocclusive pain episodes. Clinical Journal of Pain, 34(5), 438–444.
36.
MathurV. A.KileyK. B.HaywoodC.JrBediakoS. M.LanzkronS.CarrollC. P.BuenaverL. F.PejsaM.EdwardsR. R.HaythornthwaiteJ. A.CampbellC. M. (2016). Multiple levels of suffering: discrimination in health-care settings is associated with enhanced laboratory pain sensitivity in sickle cell disease. The Clinical journal of pain, 32(12), 1076.
37.
MatthieN.JeneretteC.McMillanS. (2015). Role of self-care in sickle cell disease. Pain Management Nursing, 16(3), 257–266.
38.
MaysV. M.CochranS. D.BarnesN. W. (2007). Race, race-based discrimination, and health outcomes among African Americans. Annual Review of Psychology, 58, 201–225.
39.
MerhiR.KazarianS. S. (2012). Validation of the Arabic translation of the multidimensional scale of perceived social support (Arabic-MSPSS) in a Lebanese community sample. The Arab Journal of Psychiatry, 23(2), 159–168.
40.
NakiguddeJ.MusisiS.EhnvallA.AiraksinenE.AgrenH. (2009). Adaptation of the multidimensional scale of perceived social support in a Ugandan setting. African Health Sciences, 9(Suppl 1), S35–S41.
OlaB. A.YatesS. J.DysonS. M. (2016). Living with sickle cell disease and depression in Lagos, Nigeria: A mixed methods study. Social Science & Medicine, 161, 27–36.
43.
PrezzaM.Giuseppina PacilliM. (2002). Perceived social support from significant others, family and friends and several socio-demographic characteristics. Journal of Community & Applied Social Psychology, 12(6), 422–429.
44.
RiegelB.JaarsmaT.StrömbergA. (2012). A middle-range theory of self-care of chronic illness. Advances in Nursing Science, 35(3), 194–204.
45.
RizwanM.AftabS. (2009). Psychometric properties of the multidimensional scale of perceived social support in Pakistani young adults. Pakistan Journal of Psychology, 40(1), 391–400.
46.
RüschN.CorriganP. W.ToddA. R.BodenhausenG. V. (2010). Implicit self-stigma in people with mental illness. The Journal of Nervous and Mental Disease, 198(2), 150–153.
SawantN. S.JethwaniK. S. (2010). Understanding family functioning and social support in unremitting schizophrenia: A study in India. Indian Journal of Psychiatry, 52(2), 145–149.
49.
SehloM. G.KamfarH. Z. (2015). Depression and quality of life in children with sickle cell disease: The effect of social support. BMC Psychiatry, 15(1), 78.
50.
ShechtmanZ.MorM. (2010). Groups for children and adolescents with trauma-related symptoms: Outcomes and processes. International Journal of Group Psychotherapy, 60(2), 221–244.
51.
WakefieldE. O.PoppJ. M.DaleL. P.SantanelliJ. P.PantaleaoA.ZempskyW. T. (2017). Perceived racial bias and health-related stigma among youth with sickle cell disease. Journal of Developmental & Behavioral Pediatrics, 38(2), 129–134.
52.
WeissM. G.RamakrishnaJ.SommaD. (2006). Health-related stigma: rethinking concepts and interventions. Psychology, health & medicine, 11(3), 277–287.
53.
WesleyK. M.ZhaoM.CarrollY.PorterJ. S. (2016). Caregiver perspectives of stigma associated with sickle cell disease in adolescents. Journal of Pediatric Nursing, 31(1), 55–63.
54.
ZimetG. D.PowellS. S.FarleyG. K.WerkmanS.BerkoffK. A. (1990). Psychometric characteristics of the multidimensional scale of perceived social support. Journal of Personality Assessment, 55(3-4), 610–617.
