Self-Management for Patients with Progressive, Life-Threatening Diseases and Their Family Caregivers

  • Judith RietjensEmail author
  • Sophie van Dongen
  • Erica Witkamp
Reference work entry


We are in the midst of a paradigm shift from paternalistic healthcare to more participatory healthcare, where patients’ autonomy and self-determination are increasingly valued. Patients are more and more expected to be in charge of their health. Yet, patient engagement in care is not always self-evident, especially when patients can no longer be cured and care needs are high. Learning that one’s disease has progressed to an advanced and incurable stage is for most patients and their relatives an overwhelming experience that often includes shifting ones goals from curative treatments to focusing on quality of life. Managing the physical, psychosocial and lifestyle consequences of severe illness often includes making complex decisions and navigating through a complex healthcare arena, with care delivered by healthcare professionals from a variety of disciplines. Patient self-management can be supported by healthcare professionals. Still, most of the time, patients, together with their relatives, need to manage a huge part of their life and care themselves. In this chapter, we provide comprehensive insight into self-management for patients with progressive, life-threatening diseases. We describe the concept of self-management and its domains in this population, the role of the family, determinants and outcomes of self-management, the current state of affairs of self-management support programs, and possible innovations for the future.


  1. Aparicio M, et al. What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care. BMC Palliat Care. 2017;16(1):47.PubMedPubMedCentralGoogle Scholar
  2. Aranda SK, Hayman-White K. Home caregivers of the person with advanced cancer: an Australian perspective. Cancer Nurs. 2001;24(4):300–7.PubMedGoogle Scholar
  3. Arrieta O, et al. Association of depression and anxiety on quality of life, treatment adherence, and prognosis in patients with advanced non-small cell lung cancer. Ann Surg Oncol. 2013;20(6):1941–8.PubMedGoogle Scholar
  4. Baile WF, et al. Assessment of palliative care cancer patients’ most important concerns. Support Care Cancer. 2011;19(4):475–81.PubMedGoogle Scholar
  5. Baker A. Crossing the quality chasm: a new health system for the 21st century. BMJ. 2001;323(7322):1192.PubMedCentralGoogle Scholar
  6. Bakitas M, et al. The project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: baseline findings, methodological challenges, and solutions. Palliat Support Care. 2009a;7(1):75–86.PubMedPubMedCentralGoogle Scholar
  7. Bakitas M, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the project ENABLE II randomized controlled trial. JAMA. 2009b;302(7):741–9.PubMedPubMedCentralGoogle Scholar
  8. Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84(2):191–215.PubMedGoogle Scholar
  9. Barlow J, et al. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48(2):177–87.PubMedGoogle Scholar
  10. Bekelman JE, et al. Comparison of site of death, health care utilization, and hospital expenditures for patients dying with cancer in 7 developed countries. JAMA. 2016;315(3):272–83.Google Scholar
  11. Bennett S, et al. Educational interventions for the management of cancer-related fatigue in adults. Cochrane Database Syst Rev. 2016:11, CD008144. Review. PMID: 27883365.Google Scholar
  12. Berkman ND, et al. Health literacy interventions and outcomes: an updated systematic review. Evid Rep Technol Assess (Full Rep). 2011;(199):1–941.Google Scholar
  13. Bodenheimer T, et al. Patient self-management of chronic disease in primary care. JAMA. 2002;288(19):2469–75.PubMedGoogle Scholar
  14. Börsch-Supan ea. First results from the survey of health, ageing and retirement in Europe (2004–2007): starting the longitudinal dimension. Mannheim: MEA; 2008.Google Scholar
  15. Chan R, Yates P, McCarthy AL. Fatigue self-management behaviors in patients with advanced cancer: a prospective longitudinal survey. Oncol Nurs Forum. 2016;43(6):762–71.PubMedGoogle Scholar
  16. Charmel PA, Frampton SB. Building the business case for patient-centered care. Healthc Financ Manage. 2008;62(3):80–5.PubMedGoogle Scholar
  17. Cosco TD, et al. Operationalising resilience in longitudinal studies: a systematic review of methodological approaches. J Epidemiol Community Health. 2017;71(1):98–104. Epub 2016 Aug 8.PubMedPubMedCentralGoogle Scholar
  18. Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ. 2007;335(7609):24–7.PubMedPubMedCentralGoogle Scholar
  19. Daveson BA, et al. The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers. PLoS One. 2014;9(5):e95523.PubMedPubMedCentralGoogle Scholar
  20. De Korte-Verhoef MC, et al. Burden for family carers at the end of life; a mixed-method study of the perspectives of family carers and GPs. BMC Palliat Care. 2014;13(1):16.PubMedPubMedCentralGoogle Scholar
  21. Delgado-Guay M, et al. Symptom distress in advanced cancer patients with anxiety and depression in the palliative care setting. Support Care Cancer. 2009;17(5):573–9.PubMedGoogle Scholar
  22. Dumont S, et al. A new tool to assess family caregivers’ burden during end-of-life care. J Palliat Care. 2008;24(3):151–61.PubMedGoogle Scholar
  23. Ebenau A, van Gurp J, Hasselaar J. Life values of elderly people suffering from incurable cancer: a literature review. Patient Educ Couns. 2017;100(10):1778–86.PubMedGoogle Scholar
  24. Effing TW, et al. Self-management programmes for COPD: moving forward. Chron Respir Dis. 2012;9(1):27–35.PubMedGoogle Scholar
  25. Given CW, et al. The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health. 1992;15(4):271–83.PubMedGoogle Scholar
  26. Glasgow RE, et al. Implementing practical interventions to support chronic illness self-management. Jt Comm J Qual Saf. 2003;29(11):563–74.PubMedGoogle Scholar
  27. Gomes B, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol. 2012;23(8):2006–15.PubMedGoogle Scholar
  28. Gomes B, et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013;(6):p. CD007760.Google Scholar
  29. Grey M, et al. A revised self-and family management framework. Nurs Outlook. 2015;63(2):162–70.PubMedGoogle Scholar
  30. Grimmett C, et al. RESTORE: an exploratory trial of an online intervention to enhance self-efficacy to manage problems associated with cancer-related fatigue following primary cancer treatment: study protocol for a randomized controlled trial. Trials. 2013;14:184.PubMedPubMedCentralGoogle Scholar
  31. Guerriere D, et al. Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada. Health Soc Care Community. 2016;24(4):428–38.PubMedGoogle Scholar
  32. Gysels M, et al. Culture and end of life care: a scoping exercise in seven European countries. PLoS One. 2012;7(4):e34188.PubMedPubMedCentralGoogle Scholar
  33. Hansen L, et al. Patients with hepatocellular carcinoma near the end of life: a longitudinal qualitative study of their illness experiences. Cancer Nurs. 2015;38(4):E19–27.PubMedGoogle Scholar
  34. Hardy B, King N, Rodriguez A. The experiences of patients and carers in the daily management of care at the end of life. Int J Palliat Nurs. 2014;20(12):591–8.PubMedGoogle Scholar
  35. Henselmans I, et al. Participation of chronic patients in medical consultations: patients’ perceived efficacy, barriers and interest in support. Health Expect. 2015;18(6):2375–88.PubMedGoogle Scholar
  36. Hibbard JH, Cunningham PJ. How engaged are consumers in their health and health care, and why does it matter? Res Brief. 2008;8:1–9.Google Scholar
  37. Higginson IJ, Costantini M. Dying with cancer, living well with advanced cancer. Eur J Cancer. 2008;44(10):1414–24.PubMedGoogle Scholar
  38. Hochstenbach LMJ, et al. Co-creative development of an eHealth nursing intervention: self-management support for outpatients with cancer pain. Appl Nurs Res. 2017;36:1–8.PubMedGoogle Scholar
  39. Jahn P, et al. Improvement of pain-related self-management for cancer patients through a modular transitional nursing intervention: a cluster-randomized multicenter trial. Pain. 2014;155(4):746–54.PubMedGoogle Scholar
  40. Johansson CM, Axelsson B, Danielson E. Living with incurable cancer at the end of life – patients’ perceptions on quality of life. Cancer Nurs. 2006;29(5):391–9.PubMedGoogle Scholar
  41. Johnston B, et al. An exploration of self-management support in the context of palliative nursing: a modified concept analysis. BMC Nurs. 2014;13:21.PubMedPubMedCentralGoogle Scholar
  42. Joyce BT, Berman R, Lau DT. Formal and informal support of family caregivers managing medications for patients who receive end-of-life care at home: a cross-sectional survey of caregivers. Palliat Med. 2014;28(9):1146–55.PubMedGoogle Scholar
  43. Kanera IM, et al. Use and appreciation of a tailored self-management eHealth intervention for early cancer survivors: process evaluation of a randomized controlled trial. J Med Internet Res. 2016;18(8):e229.PubMedPubMedCentralGoogle Scholar
  44. Kim AR, Park HA. Web-based self-management support interventions for cancer survivors: a systematic review and meta-analyses. Stud Health Technol Inform. 2015;216:142–7.PubMedGoogle Scholar
  45. Kirkova J, et al. Symptom prevalence in advanced cancer: age, gender, and performance status interactions. Am J Hosp Palliat Care. 2012;29(2):139–45.PubMedGoogle Scholar
  46. Korfage IJ, et al. A cluster randomized controlled trial on the effects and costs of advance care planning in elderly care: study protocol. BMC Geriatr. 2015;15:87.PubMedPubMedCentralGoogle Scholar
  47. Kuijpers W, et al. A systematic review of web-based interventions for patient empowerment and physical activity in chronic diseases: relevance for cancer survivors. J Med Internet Res. 2013;15(2):e37.PubMedPubMedCentralGoogle Scholar
  48. Lau DT, et al. Family caregiver skills in medication management for hospice patients: a qualitative study to define a construct. J Gerontol B Psychol Sci Soc Sci. 2009;64(6):799–807.PubMedGoogle Scholar
  49. Lenferink A, et al. Self-management interventions including action plans for exacerbations versus usual care in patients with chronic obstructive pulmonary disease. Cochrane Database Syst Rev. 2017;8:CD011682.PubMedGoogle Scholar
  50. Levy A, Cartwright T. Men’s strategies for preserving emotional well-being in advanced prostate cancer: an interpretative phenomenological analysis. Psychol Health. 2015;30(10):1164–82.PubMedGoogle Scholar
  51. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7.PubMedGoogle Scholar
  52. Lorig KR, et al. Effect of a self-management program on patients with chronic disease. Eff Clin Pract. 2001;4(6):256–62.PubMedGoogle Scholar
  53. McCusker J, et al. Phase II trial of a depression self-care intervention for adult cancer survivors. Eur J Cancer Care (Engl). 2018;27(1). Epub 2017 Oct 6.Google Scholar
  54. Mishra SI, et al. Exercise interventions on health-related quality of life for cancer survivors. Cochrane Database Syst Rev. 2012;15(8):CD007566.Google Scholar
  55. Moore KJ, et al. Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods. BMC Geriatr. 2017;17(1):135.PubMedPubMedCentralGoogle Scholar
  56. Norris RL, Liu Q, Bauer-Wu S. Age and functional ability are associated with self-care practices used by women with metastatic breast cancer: an exploratory study. J Nurs Healthc Chronic Illn. 2009;1(1):71–7.Google Scholar
  57. Palos GR, et al. Caregiver symptom burden: the risk of caring for an underserved patient with advanced cancer. Cancer. 2011;117(5):1070–9.PubMedGoogle Scholar
  58. Park CH, et al. Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea. Psychooncology. 2012;21(3):282–90.PubMedGoogle Scholar
  59. Payne S. EAPC task force on family careers white paper on improving support for family carers in palliative care: part 2. Eur J Palliat Care. 2010;17(6):286–90.Google Scholar
  60. Rademakers J, et al. The relative effect of health literacy and patient activation on provider choice in the Netherlands. Health Policy. 2014;114(2–3):200–6.PubMedGoogle Scholar
  61. Rademakers J, et al. Clinicians’ beliefs and attitudes toward patient self-management in the Netherlands; translation and testing of the American clinician support for patient activation measure (CS-PAM). BMC Health Serv Res. 2015;15:138.PubMedPubMedCentralGoogle Scholar
  62. Rainbird K, et al. The needs of patients with advanced, incurable cancer. Br J Cancer. 2009;101(5):759–64.PubMedPubMedCentralGoogle Scholar
  63. Rosenstein DL. Depression and end-of-life care for patients with cancer. Dialogues Clin Neurosci. 2011;13(1):101–8.PubMedPubMedCentralGoogle Scholar
  64. Ryan P, Sawin KJ. The individual and family self-management theory: background and perspectives on context, process, and outcomes. Nurs Outlook. 2009;57(4):217–25. e6PubMedPubMedCentralGoogle Scholar
  65. Schulman-Green D, et al. Processes of self-management in chronic illness. J Nurs Scholarsh. 2012;44(2):136–44.PubMedPubMedCentralGoogle Scholar
  66. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999;282(23):2215–9.PubMedGoogle Scholar
  67. Slort W, et al. Perceived barriers and facilitators for general practitioner-patient communication in palliative care: a systematic review. Palliat Med. 2011;25(6):613–29.PubMedGoogle Scholar
  68. Stajduhar K, et al. Part 1: home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998–2008). Palliat Med. 2010;24(6):573–93.PubMedGoogle Scholar
  69. Steinhauser KE, et al. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825–32.PubMedGoogle Scholar
  70. Stephens M, McKenzie H, Jordens CF. The work of living with a rare cancer: multiple myeloma. J Adv Nurs. 2014;70(12):2800–9.PubMedGoogle Scholar
  71. Stewart AL, et al. The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manag. 1999;17(2):93–108.Google Scholar
  72. Taylor SE, Stanton AL. Coping resources, coping processes, and mental health. Annu Rev Clin Psychol. 2007;3:377–401.PubMedGoogle Scholar
  73. Teno JM, et al. Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. J Pain Symptom Manag. 2001;22(3):738–51.Google Scholar
  74. Turner M, et al. Caring for a dying spouse at the end of life: ‘It’s one of the things you volunteer for when you get married’: a qualitative study of the oldest carers’ experiences. Age Ageing. 2016;45(3):421–6.PubMedGoogle Scholar
  75. Uitterhoeve RJ, et al. Psychosocial interventions for patients with advanced cancer – a systematic review of the literature. Br J Cancer. 2004;91(6):1050–62.PubMedPubMedCentralGoogle Scholar
  76. van den Berg SW, et al. Rationale of the BREAst cancer e-healTH [BREATH] multicentre randomised controlled trial: an internet-based self-management intervention to foster adjustment after curative breast cancer by decreasing distress and increasing empowerment. BMC Cancer. 2012;12:394.PubMedPubMedCentralGoogle Scholar
  77. van den Berg SW, et al. Usage of a generic web-based self-management intervention for breast cancer survivors: substudy analysis of the BREATH trial. J Med Internet Res. 2013;15(8):e170.PubMedPubMedCentralGoogle Scholar
  78. van den Beuken-van Everdingen MH, et al. Update on prevalence of pain in patients with cancer: systematic review and meta-analysis. J Pain Symptom Manag. 2016;51(6):1070–1090 e9.Google Scholar
  79. Van Houtven CH, et al. Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist. 2010;15(8):883–93.PubMedPubMedCentralGoogle Scholar
  80. Wagg K. Unravelling self-management for COPD: what next? Chron Respir Dis. 2012;9(1):5–7.PubMedGoogle Scholar
  81. Witkamp FE, et al. Effect of palliative care nurse champions on the quality of dying in the hospital according to bereaved relatives: a controlled before-and-after study. Palliat Med. 2016;30(2):180–8.PubMedGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Judith Rietjens
    • 1
    Email author
  • Sophie van Dongen
    • 1
  • Erica Witkamp
    • 2
  1. 1.Department of Public Health, Erasmus MCRotterdamThe Netherlands
  2. 2.Faculty of Nursing and Research Centre Innovations in CareRotterdam University of Applied SciencesRotterdamThe Netherlands

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