Caring for the Carers

  • Lesley EdwardsEmail author
  • Laura Beek


Caring for adolescents and young adults with cancer is a multi-dimensional role shared by many. These include: partners and friends; parents; siblings; children of the young person; staff both in hospital and in the community; others who are important to the young person. The developmental and social tasks faced by the young person need to be taken into account as well as the recognised impact of the diagnosis of cancer on both the young person and their carers in the wider social system. Support for all those who care for the young person needs to be embedded in their clinical care along with knowledge of how to access support, who to go to and what is available face to face, online and locally. Support for carers, including staff, is important to help carers feel safe and contained, including promotion of self-care to aid understanding and resilience and to minimise stress and burnout.


Carers Cancer Adolescents and young people Support Staff Stress Burnout Self-care 


  1. 1.
    Burton M, Watson M. Counselling people with cancer. West Sussex: Chichester; 1988.Google Scholar
  2. 2.
    Kazak A, Noll R (2015) The integration of psychology in pediatric oncology research and practice. American Oncologist 70(2):146-158.
  3. 3.
    Whiteson A, Whiteson M. Foreward. In: Selby P, Bailey C, editors. Cancer and the adolescent. London: BMJ; 1996.Google Scholar
  4. 4.
    Quinn P, Goncalves V, Sehovic I, Bowman M, Reed D. Quality of life in adolescent and young adult cancer patients: a systematic review of the literature. Patient relat Outcome Meas. 2015;6:19–51.CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Warner E, Kent E, Trevino K, Parsons H, Zebrack B, Kirchhoff A. Social well-being among adolescents and young adults with cancer: a systematic review. Cancer. 2016;122:1029–37.CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Zebrack B, Isaacson S. Psychosocial Care of Adolescent and Young Adult Patients with Cancer and survivors. J Clin Oncol. 2012;30:1221–6.CrossRefPubMedGoogle Scholar
  7. 7.
    Teenage Cancer trust (TCT)2012 Blueprint of care.Google Scholar
  8. 8.
    Grinyer A. The biographical impact of teenage and adolescent cancer. Chronic Illn. 2007;3:265–77.CrossRefPubMedGoogle Scholar
  9. 9.
    Adams D, Deveau E. Coping with childhood cancer: where do we go from here? Canada: Kindridge Publications Ontario; 1989.Google Scholar
  10. 10.
    Patiño-Fernández AM, Pai ALH, Alderfer M, Hwang WT, Reilly M, Kazak AE. Acute stress in parents of children newly diagnosed with cancer. Pedatric Blood Cancer. 2008;50(2):289–92.CrossRefGoogle Scholar
  11. 11.
    Children’s Cancer and Leukaemia Group. In: Edwards L, editor. Facing the death of your child; suggestions and help for families, before and afterwards. CCLG Leicester. 2015.Google Scholar
  12. 12.
    Proot I, Abu-Saad H, Crebolder H, Goldsteen M, Widdershovn K. Vulnerability of family caregivers in terminal palliative care at home: balancing between burden and capacity. Scand J Caring Sci. 2003;17:113–21.CrossRefPubMedGoogle Scholar
  13. 13.
    Hudson P, Aranda S. The Melbourne family support programme: evidence based strategies that prepare the family caregiver for supporting palliative care patients. BMJ Support Palliat Care. 2016;4(3):231–7.CrossRefGoogle Scholar
  14. 14.
    Northouse L, Williams A, Given B, McCorkle R. Psychosical care for family caregivers of patients with cancer. Journal of Clnicial Oncology. 2012;30(11):1227–34. Scholar
  15. 15.
    Macmillan Cancer Support. A Practical guide to living with and after cancer, a sort guide to make sure no one faces cancer alone. 2015.Google Scholar
  16. 16.
    Cancer Research UK (CRUK undated) Support for children whose parents have cancer. Read more at Accessed 10 Sep 2016.
  17. 17.
    Macmillan Cancer Support. Talking to children when an adult has cancer. 2016. Accessed 1 Jul 2016.
  18. 18.
  19. 19.
    Fossa S, Dahl A. Fertility and sexuality in young cancer survivors who have adult onset malignancies. Hematol Oncol Clin North Am. 2008;22(2):291–303.CrossRefPubMedGoogle Scholar
  20. 20.
    Zebrack B, Bleyer A, Albritton K, Medearis S, Tang J. Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer. 2006;107(12):2915–23.CrossRefPubMedGoogle Scholar
  21. 21.
    Zebrack B, Block R, Hayes-Lattin B, Embry L, Aguikar C, Meeske K, Li Y, Butler M, Cole S (2013) Psychosocial use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer. 119(1):201-214.
  22. 22.
    World Health Organisation (WHO) 2002 National Cancer control programmes: policies and managerial guidelines 2nd Edition geneva WHO 11.1.Google Scholar
  23. 23.
    Macmillan Cancer Support. A Practical guide to living with and after cancer, having a holistic needs assessment. Macmillan Cancer Support. 2015.Google Scholar
  24. 24.
    Hudson P, Remedios C, Thomas K. A systematic review of psychosocial interventions for family carers of palliative care patients Biomedcentral (BMC). BMC Palliat Care. 2010;9:17. Scholar
  25. 25.
    Michels C, Boulton M, Adams A, Wee B, Peters M (2016) Psychometric properties of carer reported outcome measures in palliative care a systematic review30(1):23–44.Google Scholar
  26. 26.
    Surbonne A, Baider L, Weitzman T, Brames J, Rittenberg C, Johnson J. Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. Support Care Cancer. 2010;18:255–63.CrossRefGoogle Scholar
  27. 27.
    Children’s Cancer and Leukaemia Group. How can the internet help us? A guide for parents and families using online childhood cancer information. 2014. Accessed 10 Jul 2016.
  28. 28.
    Wiener L, Weaver M, Bell C, Sansom-Daly U. Threading the cloak palliative care education for care providers of adolescents and young adults with cancer. Clini Oncol Adolsec Young Adults. 2015;
  29. 29.
    Nijboer C, Treimstra M, Tempelaar R, Sanderman R, Van den Bos GA. Measuring both negative and positive reactions to giving care to cancer patients: psychometric qualities of the caregiver reaction assessment (CRA). Soc Sci Med. 1999;48:1259–69.CrossRefPubMedGoogle Scholar
  30. 30.
    National Council Of State Boards of Nursing (NCSBN). A Nurse’s guide to professional Boundaries. 2014. Accessed 25 Jul 2016.
  31. 31.
    Santa Cruz County Service Integration. Maintain professional boundaries in interpersonal work. 2008. Accessed 25 Jun 2016.
  32. 32.
    Potter P, Deshields T, Divanbeigi J, Berger J, Cipriano D, Norris L, Olsen S. Compassion fatigue and burnout: prevalence among oncology nurses. Clin J Oncol Nurs. 2010;14(5):E56–62. Scholar
  33. 33.
    American Institute of Stress. Is it burnout or compassion fatigue? 2011. Accessed 20 Aug 2016.
  34. 34.
    Maslach C, Leiter M. The truth about burnout: how organizations cause personal stress and what to do about it. San Francisco, CA. 1998.Google Scholar
  35. 35.
    Mukherjee S, Beresford B, Tennant A. Staff burnout in paediatric oncology: new tools to facilitate the development and evaluation of effective interventions. Eur J Cancer Care. 2014;
  36. 36.
    Ramirez AJ, Graham J, Richards MA, et al. Mental health of hospital consultants: the effect of stress and satisfaction at work. Lancet. 1996;347:724–8. PMID: 8602002CrossRefPubMedGoogle Scholar
  37. 37.
    EPEC™-O. Education In Palliative And End-Of-Life Care For Oncology, Self-Study Module 15: Cancer Doctors and Burnout.
  38. 38.
    Skovholt T, Trotter-Mathison M. The resilient Practioner: burnout and compassion, fatigue prevention and self care strategies for the caring professions. Abingdon: Routledge; 2016.Google Scholar
  39. 39.
    Beresford B, Gibson F, Bayliss J, Mukherjee S. Preventing work related stress among staff working in children’s cancer principal treatment Centres in the UK: a brief survey of staff support systems and practices. Eur J Cancer Care. 2016;
  40. 40.
    Care Quality Commission. Supporting information and guidance: supporting effective clinical supervision. 2013. Accessed 20 Aug 2016.
  41. 41.
    Point of Care Foundation. Scwartz Rounds. 2015. Accessed 21 June 2016.
  42. 42.
    Good Who’s taking care of the caretaker/A Guided Self-Care Assessment for Helping Professionals. 2014. Accessed 19 May 2016.

Copyright information

© Springer International Publishing AG 2018

Authors and Affiliations

  1. 1.Consultant Clinical Psychologist Royal Marsden HospitalSuttonUK
  2. 2.Clinic PsychologistPrinses Máxima Centrum voor KinderoncologieUtrechtThe Netherlands

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