Supportive Care in Cancer

, Volume 28, Issue 2, pp 939–950 | Cite as

Improving information to caregivers of cancer patients: the Herlev Hospital Empowerment of Relatives through More and Earlier information Supply (HERMES) randomized controlled trial

  • Line LundEmail author
  • Lone Ross
  • Morten Aagaard Petersen
  • Lisa Sengelov
  • Mogens Groenvold
Original Article



The newly developed “Herlev Hospital Empowerment of Relatives through More and Earlier information Supply” (HERMES) intervention systematically identifies cancer caregivers’ unmet needs for information from health care professionals (HCPs) and offers them the information they lack. The aim of this study was to investigate the effect of the HERMES intervention on caregivers’ perception of information, communication, attention and help from HCPs, fulfillment of care needs, and anxiety and depression.


A randomized intervention study with immediate intervention in the intervention group and delayed intervention (after follow-up) in the control group among caregivers of cancer patients starting chemotherapy.


Totally 199 caregivers were included (intervention group, n = 101; control group, n = 98). No intervention effect was found on overall satisfaction with information from HCPs (p = 0.1687) measured by a single item from the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN) and chosen as primary outcome. However, positive effects were found on the CaTCoN subscales “Problems with the quality of information from and communication with HCPs” (p = 0.0279), “Lack of information from HCPs (HERMES)” (p = 0.0039), and “Lack of attention on the caregivers’ wellbeing from HCPs” (p < 0.0001). No effect was found on the CaTCoN subscale “Need for help from HCPs”, the Family Inventory of Needs subscale regarding fulfillment of care needs, or the Hospital Anxiety and Depression scale.


Although no effect was found on overall satisfaction with information, the HERMES intervention had positive effects on the caregivers’ experiences of the amount of information and attention given to them and the quality of information and communication.

Trial registration (Identifier: NCT02380469)


Cancer Caregivers Information Intervention Satisfaction Randomized controlled trial 



The authors wish to thank the caregivers and patients who took part in this trial and the involved staff.

Funding sources

The study was funded by the Danish Cancer Society (Grants R82-A5445 and R96-A6633).

Compliance with ethical standards

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

The study was registered at (Identifier: NCT02380469) and was approved by the Danish Data Protection Board (BBH-2014-049). The protocol was presented to the Scientific Ethical Committee System (no. H-15001014) and was found not to require formal approval.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Conflict of interest

The authors declare that they have no conflicts of interest.


The authors alone are responsible for the content and writing of the paper.

Supplementary material

520_2019_4900_MOESM1_ESM.docx (17 kb)
ESM 1 (DOCX 16.8 kb)
520_2019_4900_MOESM2_ESM.doc (74 kb)
ESM 2 (DOC 73.5 kb)


  1. 1.
    Haley WE (2003) Family caregivers of elderly patients with cancer: understanding and minimizing the burden of care. J Support Oncol 1(4 Suppl 2):25–29PubMedGoogle Scholar
  2. 2.
    Le T, Leis A, Pahwa P, Wright K, Ali K, Reeder B (2003) Quality-of-life issues in patients with ovarian cancer and their caregivers: a review. Obstet Gynecol Surv 58(11):749–758CrossRefGoogle Scholar
  3. 3.
    Kotkamp-Mothes N, Slawinsky D, Hindermann S, Strauss B (2005) Coping and psychological well being in families of elderly cancer patients. Crit Rev Oncol Hematol 55(3):213–229CrossRefGoogle Scholar
  4. 4.
    Resendes LA, McCorkle R (2006) Spousal responses to prostate cancer: an integrative review. Cancer Investig 24(2):192–198CrossRefGoogle Scholar
  5. 5.
    Given BA, Given CW, Kozachik S (2001) Family support in advanced cancer. CA Cancer J Clin 51(4):213–231CrossRefGoogle Scholar
  6. 6.
    Molassiotis A, Wilson B, Blair S, Howe T, Cavet J (2011) Living with multiple myeloma: experiences of patients and their informal caregivers. Support Care Cancer 19:101–111CrossRefGoogle Scholar
  7. 7.
    Ellis J (2012) The impact of lung cancer on patients and carers. Chron Respir Dis 9(1):39–47CrossRefGoogle Scholar
  8. 8.
    Lund L, Ross L, Petersen MA, Groenvold M (2014) Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey. BMC Cancer 14:541CrossRefGoogle Scholar
  9. 9.
    Van Ryn M, Sanders S, Kahn K, Van Houtven C, Griffin JM, Martin M et al (2011) Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psycho-Oncology 20:44–52CrossRefGoogle Scholar
  10. 10.
    Blum K, Sherman DW (2010) Understanding the experience of caregivers: a focus on transitions. Semin Oncol Nurs 26(4):243–258CrossRefGoogle Scholar
  11. 11.
    Brown M, Stetz K (1999) The labour of caregiving: a theoretical model of caregiving during potentially fatal illness. Qual Health Res 9(2):182–197CrossRefGoogle Scholar
  12. 12.
    Oberoi DV, White V, Jefford M, Giles G, Bolton D, Davis I et al (2016) Caregivers’ information needs and their ‘experiences of care’ during treatment are associated with elevated anxiety and depression: a cross-sectional study of the caregivers of renal cancer survivors. Support Care Cancer 24(10):4177–4186CrossRefGoogle Scholar
  13. 13.
    Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-Oncology 10:61–72CrossRefGoogle Scholar
  14. 14.
    Levesque J, Lambert SD, Girgis A, Turner J, McElduff P, Kayser K (2015) Do men with prostate cancer and their partners receive the information they need for optimal illness self-management in the immediate post-diagnostic phase? Asia Pac J Oncol Nurs 2(3):169–175CrossRefGoogle Scholar
  15. 15.
    Lund L, Ross L, Petersen MA, Groenvold M (2015) The interaction between informal cancer caregivers and health care professionals: a survey of caregivers’ experiences of problems and unmet needs. Support Care Cancer 23:1719–1733CrossRefGoogle Scholar
  16. 16.
    Douglas S, Daly B (2014) Effect of an integrated cancer support team on caregiver satisfaction with end-of-life care. Oncol Nurs Forum 41(4):E248–E255CrossRefGoogle Scholar
  17. 17.
    D’Souza V, Blouin E, Zeitouni A, Muller K, Allison P (2017) Multimedia information intervention and its benefits in partners of the head and neck cancer patients. Eur J Cancer Care 26:e12440CrossRefGoogle Scholar
  18. 18.
    Derdiarian A (1989) Effects of information on recently diagnosed cancer patients’ and spouses’ satisfaction with care. Cancer Nurs 12(5):285–292CrossRefGoogle Scholar
  19. 19.
    Tsianakas V, Robert G, Richardson A, Verity R, Oakley C, Murrells T, Flynn M, Ream E (2015) Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff. Support Care Cancer 23:3069–3080CrossRefGoogle Scholar
  20. 20.
    Deshler A, Fee-Schroeder K, Dowdy J, Mettler T, Novotny P, Zhao X et al (2006) A patient orientation program at a comprehensive cancer center. Oncol Nurs Forum 33(3):569–578CrossRefGoogle Scholar
  21. 21.
    Hudson P, Trauer T, Kelly B, O’Connor M, Thomas K, Summers M, Zordan R, White V (2013) Reducing the psychological distress of family caregivers of home-based palliative care patients: short-term effects from a randomised controlled trial. Psycho-Oncology 22:1987–1993CrossRefGoogle Scholar
  22. 22.
    Lund L, Ross L, Groenvold M (2012) The initial development of the ‘Cancer Caregivng Tasks, Consequences and Needs Questionnaire’ (CaTCoN). Acta Oncol 51(8):1009–1019CrossRefGoogle Scholar
  23. 23.
    Lund L, Ross L, Petersen MA, Groenvold M (2014) The validity and reliability of the ‘Cancer Caregiving Tasks, Consequences and Needs Questionnaire’ (CaTCoN). Acta Oncol 53(7):966–974CrossRefGoogle Scholar
  24. 24.
    Cohen J (1988) Statistical power analysis for the behavioral sciences, 2nd ed. Lawrence Erlbaum Associates, Inc., New JerseyGoogle Scholar
  25. 25.
    Kristjanson LJ, Atwood J, Degner LF (1995) Validity and reliability of the family inventory of needs (FIN): measuring the care needs of families of advanced cancer patients. J Nurs Meas 3(2):109–126CrossRefGoogle Scholar
  26. 26.
    Fridriksdottir N, Sigurdardottir V, Gunnarsdottir S (2006) Important needs of families in acute and palliative care settings assessed with Family Inventory of Needs. Palliat Med 20:425–432CrossRefGoogle Scholar
  27. 27.
    Zigmond A, Snaith R (1983) The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 67(6):361–370CrossRefGoogle Scholar
  28. 28.
    Pedersen P, Ingholt L, Tjoernhoej-Thomsen T (2015) After saying A, one must also say B: about social inequalities in cancer hehabilitation [In Danish]. National Institute of Public HealthGoogle Scholar
  29. 29.
    Stenberg U, Ruland C, Miaskowski C (2010) Review of the literature on the effect of caring for a patient with cancer. Psycho-Oncology 19:1013–1025CrossRefGoogle Scholar
  30. 30.
    Lambert S, Girgis A, Lecathelinais C, Stacey F (2013) Walking a mile in their shoes: anxiety and depression among partners and caregivers of cancer survivors at 6 and 12 months post-diagnosis. Support Care Cancer 21:75–85CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  1. 1.The Research Unit, Department of Palliative MedicineBispebjerg and Frederiksberg Hospital and University of CopenhagenCopenhagenDenmark
  2. 2.The Department of OncologyHerlev and Gentofte Hospital and University of CopenhagenHerlevDenmark
  3. 3.Section of Health Services Research, Department of Public HealthUniversity of CopenhagenCopenhagen KDenmark

Personalised recommendations