title: Breast cancer survivors' perspectives of critical lymphedema self-care support needs.
abstract: To solicit breast cancer survivors' perspectives on the variety of issues they face related to lymphedema self-care and identify support needs perceived as critical for managing their chronic medical condition.
  
  
  
  Twenty-one breast cancer survivors with lymphedema participated in audio-recorded focus groups about barriers and facilitators of self-care. Transcripts were analyzed using ATLAS.ti software by two coders. Triangulation of findings provided for refinement and category confirmation.
  
  
  
  Themes identified included lack of social support, lack of resources for self-care activities, and self-advocacy by default. Lack of social support subthemes were feeling misunderstood, minimization of needs, and feeling criticized. Lack of resources for self-care activities subthemes were lack of both tangible self-care support and self-care supplies. Self-advocacy by default subthemes were the need to proactively manage lymphedema complications, the need to educate health-care workers, and feeling marginalized by the health-care system.
  
  
  
  Lack of support and the failure of others to recognize lymphedema as a chronic condition set this patient population apart from other patients with chronic diseases and decreases the amount of help needed to manage the condition.
authors.affiliation: Vanderbilt University School of Nursing, 525 Godchaux Hall, 461 21st Avenue South, Nashville, TN, 37240, USA. Sheila.Ridner@vanderbilt.edu.
authors.forename: Sheila H
authors.initials: SH
authors.lastname: Ridner
authors.affiliation: Vanderbilt University School of Nursing, 525 Godchaux Hall, 461 21st Avenue South, Nashville, TN, 37240, USA.
authors.forename: Bethany A
authors.initials: BA
authors.lastname: Rhoten
authors.affiliation: Miami University, Oxford, USA.
authors.forename: M Elise
authors.initials: ME
authors.lastname: Radina
authors.affiliation: Vanderbilt University School of Nursing, 525 Godchaux Hall, 461 21st Avenue South, Nashville, TN, 37240, USA.
authors.forename: Melissa
authors.initials: M
authors.lastname: Adair
authors.affiliation: Vanderbilt University School of Nursing, 525 Godchaux Hall, 461 21st Avenue South, Nashville, TN, 37240, USA.
authors.forename: Sydney
authors.initials: S
authors.lastname: Bush-Foster
authors.affiliation: Vanderbilt University School of Nursing, 525 Godchaux Hall, 461 21st Avenue South, Nashville, TN, 37240, USA.
authors.forename: Vaughn
authors.initials: V
authors.lastname: Sinclair
mesh_terms: D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000523:psychology*; D005260:Female; D006801:Humans; D008209:Lymphedema / Q000534:rehabilitation*; D008875:Middle Aged; D036301:Qualitative Research; D012648:Self Care / Q000523:psychology* / Q000592:standards; D012944:Social Support; D017741:Survivors / Q000523:psychology*
keywords: Barriers; Breast cancer; Lymphedema; Oncology; Self-care
references.citation: Arch Surg. 1998 Apr;133(4):452-8
references.pmid: 9565129
references.citation: Breast Cancer Res Treat. 2012 Sep;135(2):591-602
references.pmid: 22903688
references.citation: Eur J Cancer Care (Engl). 1993;2(3):125-8
references.pmid: 10889629
references.citation: Support Care Cancer. 2011 Jun;19(6):853-7
references.pmid: 21240649
references.citation: CA Cancer J Clin. 2000 Sep-Oct;50(5):292-307; quiz 308-11
references.pmid: 11075239
references.citation: Clin J Oncol Nurs. 2012 Dec;16(6):609-14
references.pmid: 23178353
references.citation: Lymphology. 2003 Jun;36(2):84-91
references.pmid: 12926833
references.citation: J Surg Oncol. 1984 Jul;26(3):210-3
references.pmid: 6738072
references.citation: Am J Surg. 1999 Mar;177(3):184-7; discussion 188
references.pmid: 10219851
references.citation: BMC Health Serv Res. 2008 Feb 27;8:47
references.pmid: 18304337
references.citation: Lymphology. 2010 Sep;43(3):118-27
references.pmid: 21226414
references.citation: Cancer Nurs. 2012 Jan-Feb;35(1):E18-26
references.pmid: 21558848
references.citation: Support Care Cancer. 2005 Nov;13(11):904-11
references.pmid: 15812652
references.citation: Cancer Nurs. 2005 Nov-Dec;28(6):446-57; quiz 458-9
references.pmid: 16330966
references.citation: Arch Phys Med Rehabil. 2001 Dec;82(12):1639-44
references.pmid: 11733875
references.citation: Lymphology. 2004 Jun;37(2):73-91
references.pmid: 15328760