Skip to main content
SpringerLink
Log in

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

  • Reference work entry
  • First Online:
Textbook of Palliative Care

Abstract

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.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 819.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 1,099.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • Aranda SK, Hayman-White K. Home caregivers of the person with advanced cancer: an Australian perspective. Cancer Nurs. 2001;24(4):300–7.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Baile WF, et al. Assessment of palliative care cancer patients’ most important concerns. Support Care Cancer. 2011;19(4):475–81.

    Article  PubMed  Google Scholar 

  • Baker A. Crossing the quality chasm: a new health system for the 21st century. BMJ. 2001;323(7322):1192.

    Article  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84(2):191–215.

    Article  CAS  PubMed  Google Scholar 

  • Barlow J, et al. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48(2):177–87.

    Article  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • 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 

  • 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 

  • Bodenheimer T, et al. Patient self-management of chronic disease in primary care. JAMA. 2002;288(19):2469–75.

    Article  PubMed  Google Scholar 

  • 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 

  • 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.

    Article  PubMed  Google Scholar 

  • Charmel PA, Frampton SB. Building the business case for patient-centered care. Healthc Financ Manage. 2008;62(3):80–5.

    PubMed  Google Scholar 

  • Cosco TD, et al. Operationalising resilience in longitudinal studies: a systematic review of methodological approaches. J Epidemiol Community Health. 2017;71(1):98–104. https://doi.org/10.1136/jech-2015-206980. Epub 2016 Aug 8.

    Article  PubMed  Google Scholar 

  • Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ. 2007;335(7609):24–7.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Effing TW, et al. Self-management programmes for COPD: moving forward. Chron Respir Dis. 2012;9(1):27–35.

    Article  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • Glasgow RE, et al. Implementing practical interventions to support chronic illness self-management. Jt Comm J Qual Saf. 2003;29(11):563–74.

    PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • 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 

  • Grey M, et al. A revised self-and family management framework. Nurs Outlook. 2015;63(2):162–70.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Gysels M, et al. Culture and end of life care: a scoping exercise in seven European countries. PLoS One. 2012;7(4):e34188.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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 

  • Higginson IJ, Costantini M. Dying with cancer, living well with advanced cancer. Eur J Cancer. 2008;44(10):1414–24.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  • Lorig KR, et al. Effect of a self-management program on patients with chronic disease. Eff Clin Pract. 2001;4(6):256–62.

    CAS  PubMed  Google Scholar 

  • 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). https://doi.org/10.1111/ecc.12763. Epub 2017 Oct 6.

    Article  Google Scholar 

  • 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 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Palos GR, et al. Caregiver symptom burden: the risk of caring for an underserved patient with advanced cancer. Cancer. 2011;117(5):1070–9.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • Rainbird K, et al. The needs of patients with advanced, incurable cancer. Br J Cancer. 2009;101(5):759–64.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Rosenstein DL. Depression and end-of-life care for patients with cancer. Dialogues Clin Neurosci. 2011;13(1):101–8.

    PubMed  PubMed Central  Google Scholar 

  • 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. e6

    Article  PubMed  PubMed Central  Google Scholar 

  • Schulman-Green D, et al. Processes of self-management in chronic illness. J Nurs Scholarsh. 2012;44(2):136–44.

    Article  PubMed  PubMed Central  Google Scholar 

  • Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999;282(23):2215–9.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Steinhauser KE, et al. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825–32.

    Article  CAS  PubMed  Google Scholar 

  • Stephens M, McKenzie H, Jordens CF. The work of living with a rare cancer: multiple myeloma. J Adv Nurs. 2014;70(12):2800–9.

    Article  PubMed  Google Scholar 

  • 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.

    Article  CAS  Google Scholar 

  • Taylor SE, Stanton AL. Coping resources, coping processes, and mental health. Annu Rev Clin Psychol. 2007;3:377–401.

    Article  PubMed  Google Scholar 

  • 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.

    Article  CAS  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Van Houtven CH, et al. Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist. 2010;15(8):883–93.

    Article  PubMed  PubMed Central  Google Scholar 

  • Wagg K. Unravelling self-management for COPD: what next? Chron Respir Dis. 2012;9(1):5–7.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Public Health, Erasmus MC, Rotterdam, CA, The Netherlands

    Judith Rietjens & Sophie van Dongen

  2. Faculty of Nursing and Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands

    Erica Witkamp

Authors
  1. Judith Rietjens
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Sophie van Dongen
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Erica Witkamp
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Judith Rietjens .

Editor information

Editors and Affiliations

  1. School of Medicine,Palliative Care, HammondCare, The University of Sydney School of Medicine, Sydney, Australia

    Roderick Duncan MacLeod

  2. VUB-UGhent End-of-Life Care Research Group, Department of Family Medicine and Chronic Care and Department of Clinical Sciences, Vrije Universiteit Brussel (VUB), Brussels, Belgium

    Lieve Van den Block

Rights and permissions

Reprints and permissions

Copyright information

© 2019 Springer Nature Switzerland AG

About this entry

Check for updates. Verify currency and authenticity via CrossMark

Cite this entry

Rietjens, J., van Dongen, S., Witkamp, E. (2019). Self-Management for Patients with Progressive, Life-Threatening Diseases and Their Family Caregivers. In: MacLeod, R., Van den Block, L. (eds) Textbook of Palliative Care. Springer, Cham. https://doi.org/10.1007/978-3-319-77740-5_118

Download citation

Publish with us

Policies and ethics

Search

Navigation