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Barriers to rehabilitative care for young breast cancer survivors: a qualitative understanding

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Abstract

Purpose

The goal of this study was to assess the rehabilitation needs of young women breast cancer survivors under the age of 50 and to identify factors that may impact or prevent cancer rehabilitation utilization.

Methods

Utilizing a grounded theory methodology, 35 young breast cancer survivors were interviewed twice in four Atlantic Canadian provinces.

Results

A considerable number of barriers exist to receiving rehabilitative care post-treatment for young breast cancer survivors. The systemic barriers include the lack of availability of services, travel issues, cost of services, and the lack of support to address the unique needs for this age group. However, the most complicated barriers to accessing rehabilitative care were personal barriers which related more to choice and circumstances, such as the lack of time due to family responsibilities and appointment fatigue. Many of these personal barriers were rooted in the complex set of gender roles of young women as patients, mothers, workers, and caregivers.

Conclusions

The contexts of young women’s lives can have a substantial impact on their decisions to seek and receive rehabilitative care after breast cancer treatment. The systemic barriers can be reduced by introducing more services or financial assistance; however, the personal barriers to rehabilitation services are difficult to ameliorate due to the complex set of roles within and outside the family for this group of young breast cancer survivors. Health care providers need to take into consideration the multiple contexts of women’s lives when developing and promoting breast cancer rehabilitation services and programs.

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References

  1. Rejeneration: Mobile Cancer Rehabilitation (2011) http://rejeneration.ca/customized-cancer-rehabilitation-program. Accessed on March 31, 2011

  2. Avis NE, Crawford S, Manuel J (2005) Quality of life among younger women with breast cancer. J Clin Oncol 23:3322–3330

    Article  PubMed  Google Scholar 

  3. Aziz NM (2007) Cancer survivorship research: state of knowledge, challenges and opportunities. Acta Oncol 46:417–432

    Article  PubMed  Google Scholar 

  4. Beattie A (2009) Detecting breast cancer in a general practice—like finding needles in a haystack? Aust Fam Physician 38:1003–1006

    PubMed  Google Scholar 

  5. Bosompra K, Ashikaga T, O’Brien PJ, Nelson L, Skelly J (2002) Swelling, numbness, pain, and their relationship to arm function among breast cancer survivors: a disablement process model perspective. Breast J 8:338–348

    Article  PubMed  Google Scholar 

  6. Canadian Cancer Society’s Steering Committee (2010) Canadian cancer statistics 2010. Canadian Cancer Society, Toronto

  7. Canadian Cancer Society’s Steering Committee (2007) Canadian cancer statistics 2007. Canadian Cancer Society, Toronto

  8. Creswell JW (1997) Qualitative inquiry and research design: choosing among five traditions. Sage, London

    Google Scholar 

  9. DeLisa JA (2001) A history of cancer rehabilitation. Cancer 92(Suppl):970–974

    Article  PubMed  CAS  Google Scholar 

  10. Dunn J, Steginga SK (2000) Young women’s experience of breast cancer: defining young and identifying concerns. Psychooncology 9:137–146

    Article  PubMed  CAS  Google Scholar 

  11. Fitch MI, Allard M (2007) Perspectives of husbands of women with breast cancer: impact and response. Can Oncol Nurs J 17:66–78

    PubMed  Google Scholar 

  12. Fors EA, Bertheussen GF, Thune I, Juvet LK, Elvsaas IK, Oldervoll L, Anker G, Falkmer U, Lundgren S, Leivseth G (2010) Psychosocial interventions as part of breast cancer rehabilitation programs? Results from a systematic review. Psychooncology. doi:10.1002/pon.1844

    PubMed  Google Scholar 

  13. Ganz PA, Greendale GA, Petersen L, Kahn B, Bower JE (2003) Breast cancer in younger women: reproductive and late health effects of treatment. J Clin Oncol 21:4184–4193

    Article  PubMed  Google Scholar 

  14. Gerber LH (2001) Cancer rehabilitation into the future. Cancer 92:975–979

    Article  PubMed  CAS  Google Scholar 

  15. Grunfeld E (2009) Optimizing follow-up after breast cancer treatment. Curr Opin Obstet Gynecol 21:92–96

    Article  PubMed  Google Scholar 

  16. Hewitt M, Greenfield S, Stovall E (2006) From cancer patient to cancer survivor: lost in transition. National Academies, Washington, DC

    Google Scholar 

  17. Hurny C, Bernhard J, Coates AS, Castiglione-Gertsch M, Peterson HF, Gelber RD, Forbes JF, Rudenstam CM, Simoncini E, Crivellari D, Goldhirsch A, Senn HJ (1996) Impact of adjuvant therapy on quality of life in women with node-positive operable breast cancer. International Breast Cancer Study Group. Lancet 347:1279–1284

    PubMed  CAS  Google Scholar 

  18. Jenkins CL (1997) Women, work, and caregiving: how do these roles affect women’s well-being? J Women Aging 9:27–45

    Article  Google Scholar 

  19. Johansen C (2007) Rehabilitation of cancer patients—research perspectives. Acta Oncol 46:441–445

    Article  PubMed  Google Scholar 

  20. Johnsson A, Tenenbaum A, Westerlund H (2011) Improvements in physical and mental health following a rehabilitation programme for breast cancer patients. Eur J Oncol Nurs 15(1):12–15

    Article  PubMed  Google Scholar 

  21. Kornblith AB, Powell M, Regan MM, Bennett S, Krasner C, Moy B, Younger J, Goodman A, Berkowitz R, Winer E (2007) Long-term psychosocial adjustment of older vs younger survivors of breast and endometrial cancer. Psychooncology 16:895–903

    Article  PubMed  Google Scholar 

  22. Kroenke CH, Rosner B, Chen WY, Kawachi I, Colditz GA, Holmes MD (2004) Functional impact of breast cancer by age at diagnosis. J Clin Oncol 22:1849–1856

    Article  PubMed  Google Scholar 

  23. Luker KA, Beaver K, Leinster SJ, Owens RG (1996) Meaning of illness for women with breast cancer. J Adv Nurs 23:1194–1201

    Article  PubMed  CAS  Google Scholar 

  24. Lundgren H, Bolund C (2007) Body experience and reliance in some women diagnosed with cancer. Cancer Nurs 30:16–23

    Article  PubMed  Google Scholar 

  25. Miedema B, Hamilton R, Easley J (2007) From “invincibility” to “normalcy”: coping strategies of young adults during the cancer journey. Palliat Support Care 5:41–49

    Article  PubMed  Google Scholar 

  26. Moen P, Robinson J, Dempster-McClain D (1995) Caregiving and women’s well-being: a life course approach. J Health Soc Behav 36:259–273

    Article  PubMed  CAS  Google Scholar 

  27. Mongabay World Statistics (2011) http://www.mongabay.com/igapo/world_statistics_by_area.htm. Accessed on March 31, 2011

  28. National Rehabilitation Hospital (2011) Breast cancer rehabilitation. http://www.nrhrehab.org/Patient+Care/Programs+and+Service+Offerings/Outpatient+Services/Service_Page.aspx?id=10. Accessed on March 31, 2011

  29. Revenson TA, Pranikoff JR (2005) A contextual approach to treatment decision making among breast cancer survivors. Health Psychol 24:S93–S98

    Article  PubMed  Google Scholar 

  30. Ronson A, Body JJ (2002) Psychosocial rehabilitation of cancer patients after curative therapy. Support Care Cancer 10:281–291

    Article  PubMed  Google Scholar 

  31. Semple CJ, McCance T (2010) Parents’ experience of cancer who have young children: a literature review. Cancer Nurs 33:110–118

    Article  PubMed  Google Scholar 

  32. Shannon C, Smith IE (2003) Breast cancer in adolescents and young women. Eur J Cancer 39:2632–2642

    Article  PubMed  CAS  Google Scholar 

  33. Statisics Canada (2009) Population urban and rural by province and teritory. Available from http://www40.statcan.ca/l01/cst01/demo62a-eng.htm. Accessed on March 31, 2011

  34. Thibodeau J, MacRae J (1997) Breast cancer survival: a phenomenological inquiry. ANS Adv Nurs Sci 19:65–74

    PubMed  CAS  Google Scholar 

  35. Thomas-MacLean R, Miedema B, Tatemichi SR (2005) Breast cancer-related lymphedema: women’s experiences with an underestimated condition. Can Fam Physician 51:246–247

    PubMed  Google Scholar 

  36. Thomas DC, Ragnarsson KT (2009) Principles of cancer rehabilitation medicine. In: Hong WK, BastJr RC, Hait WN, Kufe DW, Pollock RE, Weichselbaum RR, Gansler TS, Holland JF, Frei E III (eds) Holland-Frei cancer medicine. People’s Medical, Shelton, CT

    Google Scholar 

  37. Vanhuyse M, Bedard PL, Sheiner J, Fitzgerald B, Clemons M (2007) Transfer of follow-up care to family physicians for early-stage breast cancer. Clin Oncol (R Coll Radiol) 19:172–176

    Article  CAS  Google Scholar 

  38. Wenzel LB, Fairclough DL, Brady MJ, Cella D, Garrett KM, Kluhsman BC, Crane LA, Marcus AC (1999) Age-related differences in the quality of life of breast carcinoma patients after treatment. Cancer 86:1768–1774

    Article  PubMed  CAS  Google Scholar 

  39. Yankaskas BC (2005) Epidemiology of breast cancer in young women. Breast Dis 23:3–8

    PubMed  Google Scholar 

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Acknowledgements

We would like to thank Naomi Tschirhart, Tashina Van Vlack, and Miles Clayden for their assistance with this project. Financial support for the study was provided by the Canadian Breast Cancer Foundation—Atlantic Chapter.

Conflicts of interest

The authors have no conflicts of interest to disclose.

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Correspondence to Baukje Miedema.

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Miedema, B., Easley, J. Barriers to rehabilitative care for young breast cancer survivors: a qualitative understanding. Support Care Cancer 20, 1193–1201 (2012). https://doi.org/10.1007/s00520-011-1196-7

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  • DOI: https://doi.org/10.1007/s00520-011-1196-7

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