Effects of Experienced Discrimination in Pediatric Sickle Cell Disease: Caregiver and Provider Perspectives

被引:9
作者
Blakey, Ariel O. O. [1 ]
Lavarin, Claudine [2 ]
Brochier, Annelise [3 ]
Amaro, Christina M. M. [1 ,4 ,5 ]
Eilenberg, Jenna Sandler [1 ]
Kavanagh, Patricia L. L. [3 ,6 ]
Garg, Arvin [7 ,8 ]
Drainoni, Mari-Lynn [2 ,6 ]
Long, Kristin A. A. [1 ]
机构
[1] Boston Univ, Dept Psychol & Brain Sci, Boston, MA 02215 USA
[2] Boston Univ, Dept Hlth Law Policy & Management, Sch Publ Hlth, Boston, MA 02215 USA
[3] Boston Med Ctr, Dept Pediat, Boston, MA USA
[4] Nemours Childrens Hosp, Dept Behav Hlth, Wilmington, DE USA
[5] Nemours Childrens Hosp, Ctr Healthcare Delivery Sci, Wilmington, DE USA
[6] Boston Univ, Dept Pediat, Sch Med, Boston, MA USA
[7] Univ Massachusetts, Dept Pediat, Chan Med Sch, Worcester, MA USA
[8] Univ Massachusetts Mem Hlth, Dept Pediat, Worcester, MA USA
关键词
Sickle cell disease; Discrimination; Caregiver perspectives; Pediatrics; PERCEIVED DISCRIMINATION; RACIAL BIAS; STIGMA; CARE; PERCEPTIONS; ADHERENCE; CHILDREN; RESPECT; TRUST; RACE;
D O I
10.1007/s40615-022-01483-4
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
For Black children with sickle cell disease (SCD) and their families, high disease stigmatization and pervasive racism increase susceptibility to discrimination in healthcare settings. Childhood experiences of discrimination can result in medical nonadherence, mistrust of healthcare providers, and poorer health outcomes across the lifespan. Caregivers and medical providers are essential to childhood SCD management and are therefore well-positioned to provide insight into discrimination in the context of pediatric SCD. This mixed-methods study sought caregivers' and providers' perspectives on processes underlying discrimination and potential solutions to mitigate the negative effects of perceived discrimination among children with SCD. Caregivers (N = 27) of children with SCD (<= 12 years old) and providers from their hematology clinics (N = 11) participated in individual semi-structured interviews exploring experiences of discrimination and daily SCD management and completed a quantitative measure of discrimination. Qualitative data were collected until themes reached saturation and subsequently transcribed verbatim, coded, and analyzed using applied thematic analysis. Quantitative and qualitative data converged to suggest the pervasiveness of discrimination in healthcare settings. Three qualitative themes emerged: (1) healthcare system factors underlie discrimination, (2) families' challenging interactions with providers lead to perceptions of discrimination, and (3) experiences of discrimination impact caregiver-provider interactions. Both caregivers and providers highlighted building trusting patient-provider relationships and encouraging patients' self-advocacy as means to reduce experiences and impacts of discrimination. These findings offer potential approaches to tangibly mitigate occurrences of discrimination in pediatric healthcare settings by trust building, accountability keeping, and fostering rapport to improve quality of care and pediatric SCD health outcomes.
引用
收藏
页码:3095 / 3106
页数:12
相关论文
共 54 条
[11]   Social Discrimination and Health Care: A Multidimensional Framework of Experiences among a Low-Income Multiethnic Sample [J].
D'Anna, Laura Hoyt ;
Hansen, Marissa ;
Mull, Brittney ;
Canjura, Carol ;
Lee, Esther ;
Sumstine, Stephanie .
SOCIAL WORK IN PUBLIC HEALTH, 2018, 33 (03) :187-201
[12]   Building trust and rapport early in the new doctor-patient relationship: a longitudinal qualitative study [J].
Dang, Bich N. ;
Westbrook, Robert A. ;
Njue, Sarah M. ;
Giordano, Thomas P. .
BMC MEDICAL EDUCATION, 2017, 17 :1-10
[13]   The vaso-occlusive pain crisis in sickle cell disease: Definition, pathophysiology, and management [J].
Darbari, Deepika S. ;
Sheehan, Vivien A. ;
Ballas, Samir K. .
EUROPEAN JOURNAL OF HAEMATOLOGY, 2020, 105 (03) :237-246
[14]   Trust, negotiation, and communication: young adults' experiences of primary care services [J].
Davey, Antoinette ;
Asprey, Anthea ;
Carter, Mary ;
Campbell, John L. .
BMC FAMILY PRACTICE, 2013, 14
[15]   Respect, trust, and the management of sickle cell disease pain in hospital: comparative analysis of concern-raising behaviors, preliminary model, and agenda for international collaborative research to inform practice [J].
Elander, James ;
Beach, Mary Catherine ;
Haywood, Carlton, Jr. .
ETHNICITY & HEALTH, 2011, 16 (4-5) :405-421
[16]   Quality of care in sickle cell disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care [J].
Evensen, Christian T. ;
Treadwell, Marsha J. ;
Keller, San ;
Levine, Roger ;
Hassell, Kathryn L. ;
Werner, Ellen M. ;
Smith, Wally R. .
MEDICINE, 2016, 95 (35)
[17]   Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity [J].
Farooq, Faheem ;
Mogayzel, Peter J. ;
Lanzkron, Sophie ;
Haywood, Carlton ;
Strouse, John J. .
JAMA NETWORK OPEN, 2020, 3 (03) :e201737
[18]   Discrimination distress during adolescence [J].
Fisher, CB ;
Wallace, SA ;
Fenton, RE .
JOURNAL OF YOUTH AND ADOLESCENCE, 2000, 29 (06) :679-695
[19]   Effects of Perceived Racial Discrimination on Health Status and Health Behavior: A Differential Mediation Hypothesis [J].
Gibbons, Frederick X. ;
Kingsbury, John H. ;
Weng, Chih-Yuan ;
Gerrard, Meg ;
Cutrona, Carolyn ;
Wills, Thomas A. ;
Stock, Michelle .
HEALTH PSYCHOLOGY, 2014, 33 (01) :11-19
[20]   Profile of Medicaid enrollees with sickle cell disease: A high need, high cost population [J].
Grady, April ;
Fiori, Anthony ;
Patel, Dhaval ;
Nysenbaum, Jessica .
PLOS ONE, 2021, 16 (10)