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Supporting self-management of pain by patients with advanced cancer: views of palliative care professionals

Supportive Care in Cancer volume 24, pages 5049–5057 (2016)Cite this article

Abstract

Purpose

The aim of the study is to ascertain the views of specialist palliative care professionals on patient self-management of cancer pain in order to inform the development of a new educational intervention to support self-management.

Methods

This is a qualitative research study using focus group interviews.

Results

Participants viewed self-management of cancer pain as desirable and achievable but also as something that could be problematic. Challenges to self-management were perceived in patient attitudes and behaviours, professionals’ own beliefs and actions and the wider social system. Practitioners showed awareness of potential tension between their espoused views (the desirability that patients manage pain autonomously) and their tacit views (the undesirability of patients managing pain in ways which conflict with professionals’ knowledge and identity).

Conclusions

Practitioners espoused patient-centred professional practice which inclined them towards supporting self-management. They showed awareness of factors which might inhibit them from effectively incorporating education and support for self-management into routine practice.

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References

  1. Clark DO, Frankel RM, Morgan DL, Ricketts G, Bair MJ, Nyland KA, Callahanet CL (2008) The meaning and significance of self-management among socioeconomically vulnerable older adults. J Gerontol 63B:S312–S319

    Article  Google Scholar 

  2. Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J (2002) Self-management approaches for people with chronic conditions: a review. Patient Educ Counsel 48:177–187

    Article  Google Scholar 

  3. Lorig KR, Holman HR (2003) Self-management education: history, definition, outcomes and mechanisms. Ann Behav Med 26:1–7

    Article  PubMed  Google Scholar 

  4. Kendall E, Catalano T, Kuipers P, Posner N, Buys N, Charker J (2007) Recovery following stroke: the role of self-management education. Soc Sci Med 64:735–746

    Article  PubMed  Google Scholar 

  5. Lorig KR, Sobel DS, Stewart AL, Brown BW, Bandura A, Ritter P, Gonzalez VM, Laurent DD, Holman HR (1999) Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: a randomized trial. Med Care 37:5–14

    CAS  Article  PubMed  Google Scholar 

  6. Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M (2001) Effect of a self-management program on patients with chronic disease. Eff Clin Pract 4:256–262

    CAS  PubMed  Google Scholar 

  7. Osborne RH, Batterham R, Livingston J (2011) The evaluation of chronic disease self-management support across settings: the international experience of the health impact questionnaire quality monitoring system. Nurs Clin N Am 46:255–270

    Article  Google Scholar 

  8. Clark NM, Becker MH, Janz NK, et al. (1991) Self-management of chronic disease by older adults: a review and questions for research. J Aging Health 3:3–27

    Article  Google Scholar 

  9. De Silva D (2011) Helping people help themselves: a review of the evidence considering whether it is worthwhile to support self-management. Health Foundation, London

    Google Scholar 

  10. Gately C, Rogers A, Sanders C (2007) Re-thinking the relationship between long-term condition self-management education and the utilisation of health services. Soc Sci Med 65:934–945

    Article  PubMed  Google Scholar 

  11. Newbould J, Taylor D, Bury M (2006) Lay-led self-management in chronic illness: a review of the evidence. Chronic Illness 2:249–261

    Article  PubMed  Google Scholar 

  12. Rogers A, Kennedy A, Bower P, Gardner G, Gately C, Lee V, Reeves D, Richardson G (2008) The UK expert patient programme: results and implications from a national evaluation. Med J Aust 189:21–24

    Google Scholar 

  13. Wilde MH, Garvin S (2007) A concept analysis of self-monitoring. J Adv Nurs 257:339–350

    Article  Google Scholar 

  14. Johnston B, McGill M, Milligan S, McElroy D, Foster C, Kearney N (2009) Self care and end of life care in advanced cancer: literature review. Eur J Oncol Nurs 13:386–398

    Article  PubMed  Google Scholar 

  15. Sherwood P, Given BA, Given CW, Champion VL, Doorenbos AZ, Azzouz F, Kozachik S, Wagler-Ziner K, Monahan PO (2005) A cognitive behavioral intervention for symptom management in patients with advanced cancer. Oncol Nurs Forum 32:1190–1198

    Article  PubMed  PubMed Central  Google Scholar 

  16. Foster C, Brown J, Killen M, Brearley S (2007) The NCRI cancer experiences collaborative: defining self-management. Eur J Oncol Nurs 11:295–297

    Article  PubMed  Google Scholar 

  17. Hopkinson JB (2007) How people with advanced cancer manage changing eating habits. Jnl Adv Nurs 59:454–462

    Article  Google Scholar 

  18. Sand AM, Harris J, Rosland JH (2009) Living with advanced cancer and short life expectancy: patients’ experiences with managing medication. J Palliat Care 25:85–89

    PubMed  Google Scholar 

  19. Schulman-Green D, Bradley EH, Tish Knobf M, Prigerson SH, DiGiovanna MP, McCorkle R (2011) Self-management and transitions in women with advanced breast cancer. J Pain Symptom Manag 42:517–525

    Article  Google Scholar 

  20. Harley C, Pini S, Bartlett YK, Velikova G (2012) Defining chronic cancer: patient experiences and self-management needs. BMJ Support Palliat Care 2:248–255

    Article  PubMed  Google Scholar 

  21. Patel G, Walsh N, Gooberman-Hill R (2014) Managing osteoarthritis in primary care: exploring healthcare professionals’ views on a multiple-joint intervention designed to facilitate self-management. Musculoskeletal Care 12(4):199–209

    Article  PubMed  Google Scholar 

  22. Govenden D, Serpell M (2014) Improving outcomes for chronic pain in primary care. Practitioner 258(1774):13–17 2

    PubMed  Google Scholar 

  23. Adam R, Bond C, Murchie P (2015) Educational interventions for cancer pain. A systematic review of systematic reviews with nested narrative review of randomized controlled trials. Patient Educ Counsel 98:269–282

    Article  Google Scholar 

  24. Bennett M, Bagnall AM, Closs SJ (2009) How effective are patient-based educational interventions in the management of cancer pain? Systematic review and meta-analysis. Pain 143:192–199

    Article  PubMed  Google Scholar 

  25. Cummings G, Olivo S, Biondo P, Stiles CR, Yurtseven Ö, Fainsinger RL, Hagen NA (2011) Effectiveness of knowledge translation interventions to improve cancer pain management. J Pain Symptom Manag 41:915–939

    Article  Google Scholar 

  26. Flemming K, Closs SJ, Foy R, Bennett MI (2012) Education in advanced disease. J Pain Symptom Manag 43:885–901

    Article  Google Scholar 

  27. Gorin S, Krebs P, Badr H, Janke EA, Jim HSL, Spring B, Mohr DC, Berendsen MA, Jacobsen PB (2012) Meta-analysis of psychosocial interventions to reduce pain in patients with cancer. J Clin Oncol 30:539–547

    Article  Google Scholar 

  28. Koller A, Miaskowski C, de Geest S, Opitz O, Spichiger E (2012) A systematic evaluation of content, structure and efficacy of interventions to improve cancer patients’ self-management of cancer pain. J Pain Symptom Manag 44:264–284

    Article  Google Scholar 

  29. West CM, Dodd MJ, Paul SM, Schumacher K, Tripathy D, Koo P, Miaskowski C (2003) The PRO-SELF©: pain control program—an effective approach for cancer pain management. Patient Educ 30:65–73

    Google Scholar 

  30. Lovell MR, Luckett T, Boyle FM, Phillips J, Agar M, Davidson PM (2014) Patient education, coaching and self-management for cancer pain. J Clin Oncol 32:1712–1720

    Article  PubMed  Google Scholar 

  31. Graneheim UH, Lundman B (2004) Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 24:105–112

    CAS  Article  PubMed  Google Scholar 

  32. Glaser BG, Strauss AL (1967) The discovery of grounded theory. Aldine, Hawthorne, NY

    Google Scholar 

  33. Mays N, Pope C (2006) Quality in qualitative health research. In: Pope C, Mays N (eds) Qualitative research in healthcare, vol 8, 3rd edn. Blackwell, Oxford, pp. 82–101

    Chapter  Google Scholar 

  34. Lincoln YS, Guba EG (1985) Naturalistic inquiry. Sage, Newbury Park, CA

    Google Scholar 

  35. Hammersley M (1992) What’s wrong with ethnography: methodological explorations. Routledge, London

    Google Scholar 

  36. McCormack B, Borg M, Cardiff S, Dewing J, Jacobs G, Janes N, Karlsson B, McCance T, Mekki TE, Porock D, van Lieshout F, Wilson V (2015) Person-centredness—the ‘state’ of the art. Int Pract Devt J 5(Suppl)[1]:1–15

    Google Scholar 

  37. Thórarinsdóttir K, Kristjánsson K (2014) Patients’ perspectives on person-centred participation in healthcare: a framework analysis. Nurs Ethics 2:129–147

    Article  Google Scholar 

  38. Johnston BM, Milligan S, Foster C, Kearney N (2012) Self-care and end of life care-patients’ and carers’ experience: a qualitative study utilising serial triangulated interviews. Support Care Cancer 20:1619–1627

    Article  PubMed  Google Scholar 

  39. Moore L, Frost J, Britten N (2015) Context and complexity: the meaning of self-management for older adults with heart disease. Soc Health Illn 37(8):1254–1269

    Article  Google Scholar 

  40. Manzano A, Ziegler L, Bennett MI (2014) Exploring interference from analgesia in patients with cancer pain: a longitudinal qualitative study. J Clin Nurs 3:1877–1888

    Article  Google Scholar 

  41. Tudor-Hart J (1971) The inverse care law. Lancet 297:405–412

    Article  Google Scholar 

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Acknowledgments

We are grateful to the patients, caregivers, health and social care professionals who participated in this study. Thanks also to Kathryn Black for the assistance with preparation for ethical and governance review and for help with recruitment and data collection. Thanks to Faith Jacob for the help with recruitment and data collection.

Author roles

MB and SJC conceived and designed the study. NH contributed to the study design, conducted the interviews, analysed the data and drafted the manuscript. KF contributed to the study design. SJC contributed to the data analysis. SJC, MB and KF revised the manuscript for important intellectual content. All authors have given final approval for publication of the article.

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Affiliations

  1. School of Healthcare, Baines Wing, University of Leeds, Leeds, LS2 9UT, UK

    Nicholas D. Hughes & S. José Closs

  2. Department of Health Sciences, University of York, York, UK

    Kate Flemming

  3. Academic Unit of Palliative Care, School of Medicine, University of Leeds, Leeds, UK

    Michael I. Bennett

Authors
  1. Nicholas D. Hughes
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  2. S. José Closs
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  3. Kate Flemming
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  4. Michael I. Bennett
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Corresponding author

Correspondence to Nicholas D. Hughes.

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Conflict of interest

The authors declare that they have no conflicts of interest.

Funding

This article presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research (Grant Reference Number: RP-PG-0610-10114). The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

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Hughes, N.D., Closs, S.J., Flemming, K. et al. Supporting self-management of pain by patients with advanced cancer: views of palliative care professionals. Support Care Cancer 24, 5049–5057 (2016). https://doi.org/10.1007/s00520-016-3372-2

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  • DOI: https://doi.org/10.1007/s00520-016-3372-2

Keywords

  • Self-management
  • Self-care
  • Cancer
  • Pain
  • Education
  • Specialist palliative care
  • Focus group interview