"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>
Clinician end-of-life experiences with pediatric Muslim patients at a US quaternary care center
clinician experience; culturally-appropriate care; diversity; Muslim patients; pediatric
CONTEXT: A small, growing body of data exist discussing the experiences of Muslim patients with the palliative care system, both in the United States and abroad, as well as providers' experiences with Muslim patients. However, no studies evaluate clinician experiences with Muslim patients in the United States, and none address the unique dynamics of pediatric clinician experiences with Muslim patients and their families in the EOL setting. OBJECTIVES: The purpose of this study is to perform a thematic analysis of clinician experiences with pediatric Muslim patients and families at the end of life. METHODS: This was a qualitative study of pediatric clinicians at Duke University Medical Center in the Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit from August 2018 to February 2019. We conducted semi-structured interviews with nurses, attending physicians, and social workers to assess participants' experiences caring for Muslim patients and families. We analyzed interview transcripts using descriptive content analysis with NVivo10. RESULTS: We interviewed 16 clinicians at Duke University Medical Center Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit. Five physicians, 5 social workers, and 6 nurses were interviewed. The majority of providers were female, Caucasian, and Christian in an institution where Muslim patients are a significant minority. Several themes emerged highlighting language barriers, difficulty engaging with Muslim families, variations in approach to care and communication, discomfort with gender roles, moral distress with unrelatable decision-making, and external pressures on patient decision-making. CONCLUSIONS: A thematic analysis of pediatric clinicians at a quaternary care center in the Southern United States yielded several prominent themes. Many clinicians recognize they likely provide disparate care to minority patients for a variety of reasons encompassing the above barriers. As we work to care for an increasingly diverse patient population, more research into barriers to care and effective educational methods is needed.
Kolmar A; Kamal AH; Steinhauser KE
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2022.01.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.01.005</a>
Seriously ill patients' discussions of preparation and life completion: an intervention to assist with transition at the end of life
Intervention; Interventions
OBJECTIVE:Patients approaching the end of life not only face challenges to physical well-being but also threats to emotional and spiritual integrity. Yet, identifying appropriate, effective, and brief interventions to address those concerns has proven elusive. We developed an intervention based on life review and emotional disclosure literatures and conducted a pilot study to determine feasibility and acceptability. This article presents qualitative intervention responses.METHOD:We conducted a three-armed randomized control trial to evaluate the effects of preparation and life completion discussion on health outcomes in patients with advanced serious illness. Hospice-eligible subjects were randomly assigned to one of three groups: (1) intervention (life completion discussion intervention), (2) attention control (relaxation meditation), and control (no intervention). Subjects in the intervention arm met with a facilitator three times. Session 1 focused on life story, Session 2 on forgiveness, and Session 3, on heritage and legacy.RESULTS:Eighteen subjects participated in the pilot intervention interviews. Subjects from a range of socioeconomic backgrounds completed the intervention with equal facility. Results from Session 1 demonstrate narrative responses participants gave as they reconnected with previous life roles, values, and accomplishments. The second session illustrated reflections of choices one might have made differently and exploration of forgiveness offered and sought. Content from the first and second sessions laid the foundation for discussing Session 3's lessons learned and heritage and legacy. Responses are summarized to assist clinicians in anticipating life review content that may improve overall quality of life at the end of life.SIGNIFICANCE OF RESULTS:Discussions of life completion may improve important health outcomes for patients at the end of life. This intervention may provide a brief, standardized, and transportable means for improving the quality of life of patients with advanced serious illness.
2009
Steinhauser KE; Alexander SC; Byock IR; George LK; Tulsky JA
Palliative & Supportive Care
2009
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).
Journal Article
<a href="http://doi.org/10.1017/S147895150999040X" target="_blank" rel="noreferrer">10.1017/S147895150999040X</a>
Measuring end-of-life care outcomes prospectively
Humans; United States; Prospective Studies; Reproducibility of Results; quality of life; Health Services Research/methods; Data Collection/methods; Outcome and Process Assessment (Health Care)/methods; Palliative Care/psychology/standards; Psychometrics/instrumentation/methods; Terminal Care/psychology/standards
This paper discusses the state of the science in prospective measurement in end-of-life research and identifies particular areas for focused attention. Topics include defining the scope of inquiry, evaluating experiences of patients too ill to communicate, the role of proxy and family response, measurement sensitivity to change, the role of theory in guiding measurement efforts, evaluating relationships between domains of end-of-life experience, and measurement of cultural comprehensiveness. The state of the sciences calls for future research to (1) conduct longitudinal studies to capture transitions in end-of-life trajectories; (2) evaluate the quality of proxy reporting as it varies by rater relationship, domain, and over time; (3) use state-of-the art psychometric and longitudinal techniques to validate measures and to assess sensitivity to change; (4) develop further and test conceptual models of the experience of dying; (5) study the inter-relatedness of multiple dimensions of end-of-life trajectories; (6) compile updated information evaluating available measurement tools; and (7) conduct population- based research with attention to ethnic and age diversity.
2005
Steinhauser KE
Journal Of Palliative Medicine
2005
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).
Journal Article
<a href="http://doi.org/10.1089/jpm.2005.8.s-30" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-30</a>
Evolution in measuring the quality of dying
Attitude to Death; Non-U.S. Gov't; P.H.S.; U.S. Gov't; Human; Support; Quality Assurance; Non-P.H.S.; Health Care/trends; Hospice Care/psychology/standards; Process Assessment (Health Care)/methods; Quality of Life/psychology; Terminal Care/psychology/standards
PURPOSE: Despite multiple efforts to improve the experience for dying patients, researchers still struggle to identify appropriate outcome measures that assess patients' and families' experiences. If health care systems are to provide excellent, compassionate care to dying patients and their families, there must be a valid means of assessing the quality of those experiences and interventions to improve care. The purpose of this paper is to evaluate quality-of-life instruments currently used to assess the experiences of dying patients, and to offer a design for a next generation instrument to measure quality at the end of life. DESIGN: Sources were attained through a review of the quality of life, quality of dying, and end-of-life care literatures. The terms quality of life, quality of care, terminal care, hospice, assessment, and measurement were used singly and in combination in the MEDLINE database from 1966 to 2001. DISCUSSION: An appropriate clinical quality of dying instrument must be derived from the perspectives of end-of-life care participants and include the multiple domains of experience important to patients and families. Because dying patients are often too ill to communicate, nonresponse bias is a major problem in this population. Researchers must identify additional objective and subjective measures that clearly reflect, correspond well (or predictably) with, and serve as alternatives to patients' self-ratings. Additionally, an appropriate assessment tool must accommodate individual definitions of the quality of dying and demonstrate sensitivity to change over time.
2002
Steinhauser KE; Clipp EC; Tulsky JA
Journal Of Palliative Medicine
2002
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).
Journal Article
In search of a good death: Observations of patients, families, and providers
2000
Steinhauser KE; Clipp EC; McNeilly M; Christakis NA; McIntyre LM; Tulsky JA
Annals Of Internal Medicine
2000
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).
Journal Article
<a href="http://doi.org/10.7326/0003-4819-132-10-200005160-00011" target="_blank" rel="noreferrer">10.7326/0003-4819-132-10-200005160-00011</a>