"Treat us with dignity": a qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer
被引:81
作者:
Kamen, Charles S.
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机构:
Univ Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Kamen, Charles S.
[1
]
Alpert, Alison
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Univ Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Alpert, Alison
[1
]
Margolies, Liz
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机构:
Natl LGBT Canc Network, New York, NY USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Margolies, Liz
[2
]
Griggs, Jennifer J.
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机构:
Univ Michigan, Ann Arbor, MI 48109 USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Griggs, Jennifer J.
[3
]
Darbes, Lynae
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Univ Michigan, Ann Arbor, MI 48109 USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Darbes, Lynae
[3
]
Smith-Stoner, Marilyn
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Calif State Univ San Bernardino, San Bernardino, CA 92407 USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Smith-Stoner, Marilyn
[4
]
Lytle, Megan
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Univ Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Lytle, Megan
[1
]
Poteat, Tonia
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Johns Hopkins Bloomberg Sch Publ Hlth, Baltimore, MD USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Poteat, Tonia
[5
]
Scout, N. F. N.
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Torvus Grp, Beverly Hills, CA USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Scout, N. F. N.
[6
]
Norton, Sally A.
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Univ Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USAUniv Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
Norton, Sally A.
[1
]
机构:
[1] Univ Rochester, Saunders Res Bldg,265 Crittenden Blvd,Box 420658, Rochester, NY 14642 USA
[2] Natl LGBT Canc Network, New York, NY USA
[3] Univ Michigan, Ann Arbor, MI 48109 USA
[4] Calif State Univ San Bernardino, San Bernardino, CA 92407 USA
[5] Johns Hopkins Bloomberg Sch Publ Hlth, Baltimore, MD USA
Cancer;
Sexual orientation;
Gender identity;
Health disparities;
Sexual and gender minorities;
HEALTH-CARE;
BREAST-CANCER;
SELF-ADVOCACY;
PSYCHOLOGICAL DISTRESS;
SEXUAL ORIENTATION;
SOCIAL SUPPORT;
DISPARITIES;
DISCLOSURE;
PROVIDERS;
WOMEN;
D O I:
10.1007/s00520-018-4535-0
中图分类号:
R73 [肿瘤学];
学科分类号:
100214 ;
摘要:
PurposeDespite indications that lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients have unique needs when seeking healthcare, the experiences of LGBTQ patients in the context of cancer care have not been fully explored. This qualitative study investigated recommendations offered by LGBTQ patients with cancer for improving cancer care.MethodsTwo hundred seventy-three LGBTQ people across the USA who had been diagnosed with cancer completed an online survey that included open-ended questions. Using responses to these questions, two researchers independently conducted open coding. A code book was generated collaboratively and the data were coded independently. Codes were clustered and refined and the data were independently re-coded.ResultsFive themes emerged. LGBTQ patients with cancer: (1) are affected by providers' LGBTQ-specific knowledge and skills, assumptions, and mistreatment; (2) negotiate disclosure of identities based on safety of clinical encounters; (3) have differing experiences based on multiple intersecting identities; (4) receive more effective care when members of their support networks are included; and (5) are self-advocates and undergo transformative experiences in the face of morbidity and marginalization.ConclusionsLGBTQ cancer survivors report challenges accessing competent cancer treatment. To address this, cancer care providers should provide safe clinical encounters, inquire about and respond professionally to patients' identities and identifiers, include chosen support people, provide care relevant to patients' gender identities, and address treatments' effects on sexuality. Training providers about diverse LGBTQ communities and acknowledging the strengths of LGBTQ patients with cancer may improve provider/patient relationships. Provider training could be created based on these principles.
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Univ North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
Mennicke, Annelise
Moradi, Bonnie
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Univ Florida, Dept Psychol, Gainesville, FL USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
Moradi, Bonnie
Brienzo, Michael J.
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Univ North Carolina, Dept Publ Hlth Sci, 9201 Univ City Blvd, Charlotte, NC 28223 USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
Brienzo, Michael J.
McMillan, Iris
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Univ North Carolina, Dept Psychol Sci, Charlotte, NC USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
McMillan, Iris
Kaniuka, Andrea
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Univ North Carolina, Dept Publ Hlth Sci, 9201 Univ City Blvd, Charlotte, NC 28223 USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
Kaniuka, Andrea
Moxie, Jessamyn
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Univ North Carolina, Dept Publ Hlth Sci, 9201 Univ City Blvd, Charlotte, NC 28223 USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
Moxie, Jessamyn
Yoder, Anna
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Univ North Carolina, Dept Publ Hlth Sci, 9201 Univ City Blvd, Charlotte, NC 28223 USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
Yoder, Anna
Post, Abby
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Univ North Carolina, Dept Publ Hlth Sci, 9201 Univ City Blvd, Charlotte, NC 28223 USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
Post, Abby
Ortiz, Chelsea
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Univ Charlotte North Carolina, Div Student Affairs, Charlotte, NC USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
Ortiz, Chelsea
Reinken, Michelle
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Univ North Carolina, Div Inst Integr, Charlotte, NC USAUniv North Carolina, Violence Prevent Ctr, Sch Social Work, Charlotte, NC USA
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Boston Univ, Sch Med, Dept Med, Sect Gen Internal Med,Boston Med Ctr, Boston, MA 02118 USABoston Univ, Sch Med, Dept Med, Sect Gen Internal Med,Boston Med Ctr, Boston, MA 02118 USA
Streed, Carl G., Jr.
Hedian, Helene F.
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Johns Hopkins Sch Med, Dept Med, Div Gen Internal Med, Baltimore, MD USABoston Univ, Sch Med, Dept Med, Sect Gen Internal Med,Boston Med Ctr, Boston, MA 02118 USA
Hedian, Helene F.
Bertram, Amanda
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Johns Hopkins Sch Med, Dept Med, Div Gen Internal Med, Baltimore, MD USABoston Univ, Sch Med, Dept Med, Sect Gen Internal Med,Boston Med Ctr, Boston, MA 02118 USA
Bertram, Amanda
Sisson, Stephen D.
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Johns Hopkins Sch Med, Dept Med, Div Gen Internal Med, Baltimore, MD USABoston Univ, Sch Med, Dept Med, Sect Gen Internal Med,Boston Med Ctr, Boston, MA 02118 USA
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Univ Leicester, Coll Life Sci, Leicester, Leics, England
Amsterdam UMC Locat VUmc, Dept Med Psychol, Amsterdam, NetherlandsUniv Leicester, Coll Life Sci, Leicester, Leics, England
Millet, Nessa
Barnes, Rebecca
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Univ Leicester, Dept Populat Hlth Sci, Leicester, Leics, EnglandUniv Leicester, Coll Life Sci, Leicester, Leics, England
Barnes, Rebecca
Darko, Natalie
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Univ Leicester, Coll Life Sci, Leicester, Leics, England
NIHR Leicester Biomed Res Ctr, Leicester, Leics, EnglandUniv Leicester, Coll Life Sci, Leicester, Leics, England
Darko, Natalie
Moss, Esther
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Univ Leicester, Coll Life Sci, Leicester, Leics, England
Univ Hosp Leicester NHS Trust, Leicester, Leics, EnglandUniv Leicester, Coll Life Sci, Leicester, Leics, England
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Yeshiva Univ, Wurzweiler Sch Social Work, 2495 Amsterdam Ave, New York, NY 10033 USAYeshiva Univ, Wurzweiler Sch Social Work, 2495 Amsterdam Ave, New York, NY 10033 USA
Stein, Gary L.
Berkman, Cathy
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Fordham Univ, Grad Sch Social Serv, New York, NY 10023 USAYeshiva Univ, Wurzweiler Sch Social Work, 2495 Amsterdam Ave, New York, NY 10033 USA
Berkman, Cathy
O'Mahony, Sean
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Rush Univ, Med Ctr, Dept Internal Med, Chicago, IL 60612 USAYeshiva Univ, Wurzweiler Sch Social Work, 2495 Amsterdam Ave, New York, NY 10033 USA
O'Mahony, Sean
Godfrey, David
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Amer Bar Assoc, Commiss Law & Aging, Washington, DC 20013 USAYeshiva Univ, Wurzweiler Sch Social Work, 2495 Amsterdam Ave, New York, NY 10033 USA
Godfrey, David
Javier, Noelle Marie
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Icahn Sch Med Mt Sinai, Brookdale Dept Geriatr & Palliat Med, New York, NY 10029 USAYeshiva Univ, Wurzweiler Sch Social Work, 2495 Amsterdam Ave, New York, NY 10033 USA
Javier, Noelle Marie
Maingi, Shail
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St Peters Hlth Partners, Dept Med Oncol, Troy, NY USAYeshiva Univ, Wurzweiler Sch Social Work, 2495 Amsterdam Ave, New York, NY 10033 USA
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VA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA
Boston Univ, Chobanian & Avedisian Sch Med, Sect Gen Internal Med, Boston, MA USA
Boston Univ, Sch Publ Hlth, Dept Hlth Law Policy & Management, Boston, MA USAVA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA
Jasuja, Guneet K.
Reisman, Joel I.
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VA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USAVA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA
Reisman, Joel I.
Jefferson, Christina
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Boston Univ, Chobanian & Avedisian Sch Med, Boston, MA USAVA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA
Jefferson, Christina
Hall, Robert B.
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VA Boston Healthcare Syst, Boston Cooperat Studies Program CSP, Boston, MA USAVA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA
Hall, Robert B.
Van Cleve, Raymond G.
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VA Palo Alto Hlth Care Syst, Palo Alto, CA USAVA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA
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Bishop, Teddy
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Tuscaloosa VA Med Ctr, Tuscaloosa, AL USAVA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA
Bishop, Teddy
Sperry, Heather A.
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Vet Hlth Indiana, Indianapolis, IN USAVA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA
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Wilcox, Michelle C.
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VA Iowa City Healthcare Syst, Ctr Access & Delivery Res & Evaluat CADRE, Iowa City, IA USA
Univ Iowa, Dept Internal Med, Iowa City, IA USAVA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA
Racila, A. M.
Hilgeman, Michelle M.
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Tuscaloosa VA Med Ctr, Tuscaloosa, AL USA
Univ Alabama, Dept Psychol, Tuscaloosa, AL USAVA Bedford Healthcare Syst, Ctr Hlth Optimizat & Implementat Res, 200 Springs Rd, Bedford, MA 01730 USA