Finding a new normal: a grounded theory study of rehabilitation after treatment for upper gastrointestinal or gynaecological cancers – the patient's perspective
Corresponding Author
C. Sandsund MSc, MCSP
Allied Health Professional Researcher
Therapies Department, The Royal Marsden NHS Foundation Trust, London, UK
Correspondence address: Cathy Sandsund, Therapies Services, Royal Marsden NHS Foundation Trust, Fulham Road, London SW3 6JJ, UK (e-mail: [email protected]).Search for more papers by this authorN. Pattison DNSc, RN
Senior Clinical Nursing Research Fellow
Nursing, Risk and Rehabilitation, The Royal Marsden NHS Foundation Trust, Sutton, Surrey, UK
Search for more papers by this authorN. Doyle MSc, RGN
Nurse Consultant, Living with and Beyond Cancer
Clinical Services Department, The Royal Marsden NHS Foundation Trust, London, UK
Search for more papers by this authorC. Shaw PhD, RD
Consultant Dietitian & Rehabilitation Research Lead
Therapies Department, The Royal Marsden NHS Foundation Trust, London, UK
Search for more papers by this authorCorresponding Author
C. Sandsund MSc, MCSP
Allied Health Professional Researcher
Therapies Department, The Royal Marsden NHS Foundation Trust, London, UK
Correspondence address: Cathy Sandsund, Therapies Services, Royal Marsden NHS Foundation Trust, Fulham Road, London SW3 6JJ, UK (e-mail: [email protected]).Search for more papers by this authorN. Pattison DNSc, RN
Senior Clinical Nursing Research Fellow
Nursing, Risk and Rehabilitation, The Royal Marsden NHS Foundation Trust, Sutton, Surrey, UK
Search for more papers by this authorN. Doyle MSc, RGN
Nurse Consultant, Living with and Beyond Cancer
Clinical Services Department, The Royal Marsden NHS Foundation Trust, London, UK
Search for more papers by this authorC. Shaw PhD, RD
Consultant Dietitian & Rehabilitation Research Lead
Therapies Department, The Royal Marsden NHS Foundation Trust, London, UK
Search for more papers by this authorAbstract
This paper reports on a study of perspectives of rehabilitation needs by 33 people treated for upper gastrointestinal and gynaecological cancers. This study used focus groups informed by grounded theory and involved adult participants who had completed radical treatment at a UK cancer centre. Patients were involved in the design. Findings indicate that these patients are likely to have ongoing rehabilitation needs and that there was poor awareness of possible treatment of symptoms and of rehabilitation services. Novel findings include distinct perspectives of adults who have completed treatment for upper gastrointestinal and gynaecological cancers regarding their rehabilitation needs. Patients on surgical pathways, or who had longer hospital stays, had a better understanding of the rehabilitation services available to them and they accessed them more easily to ameliorate their post-treatment symptoms. Furthermore rehabilitation services are not equally accessed by patients on different treatment pathways. A grounded theory of cancer rehabilitation was developed with core categories of: impacts on the person, adjustment after treatment, individualised tailored support and information sources. The overarching theme is ‘seeking a new normal’. Individualised tailored support is integral to seeking and establishing a new normal. Routine assessment and referral for rehabilitation treatment warrants further evaluation in these groups.
References
- Armes J., Crowe M., Colbourne L., Morgan H., Murrells T., Oakley C., Palmer N., Ream E., Young A. & Richardson A. (2009) Patients' supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. Journal of Clinical Oncology 27, 6172–6179.
- Aziz N.M. (2002) Cancer survivorship research: challenge and opportunity. The Journal of Nutrition 132 (11 Suppl.), 3494S–3503S.
- Cancer 52 & NCSI Research Workstream Consultation (2009) Less common cancers consultation. Available at: http://ncsi.org.uk/wp-content/uploads/Mapping_rarer_cancers_report.pdf (accessed 12 November 2012).
- Cecil R., Mc Caughan E. & Parahoo K. (2010) ‘It's hard to take because I am a man's man’: an ethnographic exploration of cancer and masculinity. European Journal of Cancer Care 19, 501–509.
- Cheville A.L., Beck L.A., Petersen T.L., Marks R.S. & Gamble G.L. (2009) The detection and treatment of cancer-related functional problems in an outpatient setting. Supportive Care in Cancer 17, 61–67.
- Davies N.J., Batehup L. & Thomas R. (2011) The role of diet and physical activity in breast, colorectal, and prostate cancer survivorship: a review of the literature. British Journal of Cancer 105 (1 Suppl.), 52S–73S.
- Demark-Wahnefried W., Clipp E.C., Morey M.C., Pieper C.F., Sloane R., Snyder D.C. & Cohen H.J. (2006a) Lifestyle intervention development study to improve physical function in older adults with cancer: outcomes from Project LEAD. Journal of Clinical Oncology 24, 3465–3473.
- Demark-Wahnefried W., Pinto B.M. & Gritz E.R. (2006b) Promoting health and physical function among cancer survivors: potential for prevention and questions that remain. Journal of Clinical Oncology 24, 5125–5131.
- Department of Health (2000) NHS Cancer Plan: a plan for investment, a plan for reform. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4009609 (accessed 12 November 2012).
- Department of Health (2007) Cancer Reform Strategy. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081006 (accessed 12 November 2012).
- Department of Health (2011) Improving outcomes: a strategy for cancer. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_123371 (accessed 12 November 2012).
- Detmar S.B., Aaronson N.K., Wever L.D., Muller M. & Schornagel J.H. (2000) How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality-of-life issues. Journal of Clinical Oncology 18, 3295–3301.
- Doyle N. (2008) Cancer survivorship: evolutionary concept analysis. Journal of Advanced Nursing 62, 499–509.
- Ferlay J., Parkin D.M. & Steliarova-Foucher E. (2010) Estimates of cancer incidence and mortality in Europe in 2008. European Journal of Cancer 46, 765–781.
-
Hill A. (2011) Survey evaluates quality of patient information at the end of treatment. Cancer Nursing Practice 10, 16–20.
10.7748/cnp2011.12.10.10.16.c8865 Google Scholar
- Hodgkinson K., Butow P., Fuchs A., Hunt G., Stenlake A., Hobbs K., Brand A., Wain G. & Wain G. (2007) Long-term survival from gynecologic cancer: psychosocial outcomes, supportive care needs and positive outcomes. Gynecologic Oncology 104, 381–389.
- Høybye M.T., Dalton S.O., Christensen J., Larsen L.R., Kuhn K.G., Jensen J.N., Carlsen K. & Johansen C. (2008) Research in Danish cancer rehabilitation: social characteristics and late effects of cancer among participants in the FOCARE research project. Acta Oncologica (Stockholm, Sweden) 47, 47–55.
- Karnilowicz W. (2011) Identity and psychological ownership in chronic illness and disease state. European Journal of Cancer Care 20, 276–282.
- Kitzinger J. (1994) The methodology of focus groups: the importance of interaction between research participants. Sociology of Health and Illness 16, 103–121.
- Macmillan Cancer Support (2008) It's no life: living with the long term effects of cancer. Available at: http://www.%20macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/itsnolife.pdf (accessed 12 November 2012).
- Macmillan Cancer Support (2010) Allied Health Professionals in cancer care: an evidence review. Available at: http://www.macmillan.org.uk/Documents/AboutUs/Commissioners/AlliedHealthProfessionalsAnEvidenceReviewOctober2011.pdf (accessed 12 November 2012).
- Miedema B. & Easley J. (2012) Barriers to rehabilitative care for young breast cancer survivors: a qualitative understanding. Supportive Care in Cancer 20, 1193–1201.
-
Morgan D.L. (1997) Focus Groups as Qualitative Research. Sage, California, USA.
10.4135/9781412984287 Google Scholar
- National Cancer Action Team (2007a) Living with and beyond cancer: cancer rehabilitation. Available at: http://ncat.nhs.uk/our-work/living-beyond-cancer/cancer-rehabilitation# (accessed 12 November 2012).
- National Cancer Action Team (2007b) Living with and beyond cancer: cancer rehabilitation. Available at: http://ncat.nhs.uk/our-work/living-beyond-cancer/holistic-needs-assessment# (accessed 12 November 2012).
- National Cancer Survivorship Initiative (2010) NCSI Research Work Stream Survivorship Journey Mapping Project. Available at: http://www.ncsi.org.uk/wp-content/uploads/Mapping-common-cancers-report.pdf (accessed 12 November 2012).
- NHS Confederation and Macmillan Cancer Support (2010) Coordinated cancer care: better for patients, more efficient. London. Available at: http://www.nhsconfed.org/Publications/Documents/Coordinated_cancer_care180610.pdf (accessed 12 November 2012).
- NICE (2004) Improving Supportive and Palliative Care for Adults with Cancer. National Institute for Clinical Excellence, London, UK.
- O'Connor S.J. (2011) Listening to patients: the best way to improve the quality of cancer care and survivorship. European Journal of Cancer Care 20, 141–143.
- Snyder C.F., Dy S.M., Hendricks D.E., Brahmer J.R., Carducci M.A., Wolff A.C. & Wu A.W. (2007) Asking the right questions: investigating needs assessments and health-related quality-of-life questionnaires for use in oncology clinical practice. Supportive Care in Cancer 15, 1075–1085.
- Strauss A. & Corbin J.M. (1988) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 2nd edn. Sage, California, USA.
- Sully J.L., Baltzan M.A., Wolkove N. & Demers L. (2012) Development of a patient needs assessment model for pulmonary rehabilitation. Qualitative Health Research 22, 76–88.
- Thorsen L., Nystad W., Stigum H., Dahl O., Klepp O., Bremnes R.M., Wist E. & Fossa S.D. (2005) The association between self-reported physical activity and prevalence of depression and anxiety disorder in long-term survivors of testicular cancer and men in a general population sample. Supportive Care in Cancer 13, 637–646.
- Van de Velde D., Bracke P., Van Hove G., Josephsson S., Devisch I. & Vanderstraeten G. (2011) The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in their transition period from hospital to home. Disability and Rehabilitation 34, 491–502.
- Webb C. & Kevern J. (2001) Focus groups as a research method: a critique of some aspects of their use in nursing research. Journal of Advanced Nursing 33, 798–805.
- Wessels H., de Graeff A., Wynia K., de Heus M., Kruitwagen C.L., Woltjer G.T., Teunissen S.C. & Voest E.E. (2010) Gender-related needs and preferences in cancer care indicate the need for an individualized approach to cancer patients. The Oncologist 15, 648–655.
- Williams M. (2000) Interpretivism and generalisation. Sociology 34, 209–224.
- World Medical Association (2008) World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. Available at: http://www.wma.net/en/30publications/10policies/b3/index.html (accessed 12 November 2012).
- Yabroff K.R., Lawrence W.F., Clauser S., Davis W.W. & Brown M.L. (2004) Burden of illness in cancer survivors: findings from a population-based national sample. Journal of the National Cancer Institute 96, 1322–1330.