"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System
qualitative; barrier; health; transcription; pediatrics; communication; human; article; child; female; male; interview; fear; population; sample; patients; research; evaluation; care; clinical; genetic; person; analysis; size; system; content; semi; structured; United; marginalized; married; Muslim; States; thematic; wing
Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a thematic analysis of Muslim parents' interactions with the AHCS and how their background informs their approach to care. Method(s): This was a qualitative study of Muslim parents of children with life-limiting conditions in the Research Triangle Area from December 2019 to March 2019. We conducted semistructured interviews with parents to assess their experiences with the AHCS. We probed interview transcripts using descriptive content analysis with NVivo10. Result(s): We interviewed 10 parents in the Research Triangle Area. All patients were female, most were married, most spoke at least one other language in addition to English, and most were not born in the United States. Several themes emerged highlighting open communication with care teams, willingness to share religious affiliations, and the importance of leaning into faith and accepting God's will. Conclusion(s): A thematic analysis of Muslim parents' interactions with the AHCS describes value in honest communication, mixed concerns about how providers will react to their religious affiliation, and emphasizes the importance of leaning heavily into faith and accepting God's plan. Future studies evaluating needs of Muslim patients, especially those with different diagnoses, language barriers, and a larger sample size will further delineate needs to minimize inequalities in care.
Kolmar A; Kamal AH; Steinhauser KE
Journal of Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2022.0154">10.1089/jpm.2022.0154</a>
Inequities in Pediatric Palliative Care: Where Are the Consults?*
barrier; health; medicine; social life; pediatrics; communication; quality; relationship; palliative; Caucasian of Hispanic; competence; editorial; human; consultation; therapy; race; access; disparity; care; patient; personnel; equity; utilization; intensive; Black; cultural; difference; person; racism; bias; cell; doctor; English; ethnic; exclusion; implicit; limited; multilingualism; proficiency; racial; stem; transplant
acial and ethnic inequities are well documented in medicine (1). Patients from historically marginalized groups have consistently reported medical mistrust, poor communication, and perceived discrimination as barriers to the care that they receive (2,3). Pediatrics is no exception with racial and ethnic differences noted in the treatment of numerous conditions, including cancer and conditions treated in the PICU (4,5).
Pediatric palliative care (PPC) is a specialty that strives to prevent or ease distress while maximizing quality of life for children with life-threatening conditions, as well as their families, throughout the trajectory of a child’s illness (6). Though PPC is not specific to end of life (EOL), the utilization of these resources at EOL leads to improved outcomes for families (6). In children who undergo hematopoietic stem cell transplantation (HSCT), PPC is associated with less intervention-focused care and greater opportunity for improved EOL communication and advance preparation (6). [...]
Suttle ML
Pediatric Critical Care Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/PCC.0000000000002922">10.1097/PCC.0000000000002922</a>