Review Article| Volume 15, ISSUE 5, P428-441, December 2011

Download started.


Family members of patients with cancer: What they know, how they know and what they want to know

Published:November 22, 2010DOI:



      Recent changes in healthcare management generally and in cancer care in particular, indicate a major shift in the clinical management of cancer from hospitals and healthcare professionals (HCPs) to patients and families. In light of these changes national and international policies and reports by the
      • Department of Health & Children
      Report of the National Advisory Committee on Palliative Care.
      • Department of Health & Children
      National Cancer Forum: a Strategy for Cancer Control in Ireland.
      and the
      • World Health Organisation
      Palliative Care: the Solid Facts.
      have recommended that HCPs support family members (FMs) to care for loved ones. The purpose of this review therefore was to explore the extent to which FMs’ needs are realised by HCPs in practice.


      To examine recent research (2000–2010) in relation to; the type of information that FMs of patients with cancer generally seek, how they seek this information from HCPs, and, FMs’ experiences of communicating with HCPs in this context.


      A review of the literature was conducted using key databases Medline, Pub med, Psych-Info and CINAHL.


      Thirty four papers were included in the review. Overall the studies demonstrated that FMs of patients with cancer have similar information needs and demonstrate similar strategies for seeking information. While many FMs report positive communication experiences with HCPs and have information needs met, the majority of FMs report negative communication encounters with HCPs.


      HCPs are highly significant in the lives of FMs of patients with cancer. The review concludes with identifying; FMs most wanted information needs, their struggles with accessing HCPs and the type of communication encounters FMs most desire to have with HCPs. Recommendations for education, practice and research are addressed.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to European Journal of Oncology Nursing
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Adams E.
        • Boulton M.
        • Watson E.
        The information needs of partners and family members of cancer patients: a systematic literature review.
        Patient Education and Counseling. 2009; 77: 179-186
        • Andreassen S.
        • Randers I.
        • Naslund E.
        • Stockeld D.
        • Mattiasson A.
        Family members experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer.
        European Journal of Cancer Care. 2005; 14: 426-434
        • Andreassen S.
        • Randers I.
        • Naslund E.
        • Stockeld D.
        • Mattiasson A.
        Information needs following a diagnosis of oesophageal cancer; self-perceived information needs of patients and family members compared with the perception of health care professional: a pilot study.
        European Journal of Cancer Care. 2006; 16: 277-285
        • Arnold E.
        • Boggs K.
        Interpersonal Relationships: Professional Communication Skills for Nurses.
        fifth ed. Saunders, Philadelphia2007
        • Beaver K.
        • Witham G.
        Information needs of the informal carers of women treated for breast cancer.
        European Journal of Oncology Nursing. 2007; 11: 16-25
        • Ben-Zur H.
        • Gilbar O.
        • Lev S.
        Coping with breast cancer: patient, spouse, and dyad models.
        Psychosomatic Medicine. 2001; 63: 32-39
        • Carter P.
        A not so silent cry for help: older female cancer caregivers’ need for information.
        Journal of Holistic Nursing. 2001; 19: 271-283
        • Chalmers K.
        • Marles S.
        • Tatarud D.
        • Scott-Findlay S.
        • Serfas K.
        Reports of information and support needs of daughters and sisters of women with breast cancer.
        European Journal of Cancer Care. 2003; 12: 81-90
        • Davison B.
        • Gleave M.
        • Goldenberg S.
        • Degner L.
        • Hoffart D.
        • Berkowitz J.
        Assessing information and decision preferences of men with prostate cancer and their partners.
        Cancer Nursing. 2002; 25: 42-49
        • Department of Health & Children
        Report of the National Advisory Committee on Palliative Care.
        Department of Health & Children, Dublin2001
        • Department of Health & Children
        National Cancer Forum: a Strategy for Cancer Control in Ireland.
        Department of Health & Children, Dublin2006
        • Docherty A.
        • Brothwell C.
        • Symons M.
        The impact of inadequate knowledge on patient and spouse experience of prostate cancer.
        Cancer Nursing. 2007; 30: 58-63
        • Echlin K.
        • Rees C.
        Information needs and information-seeking behaviors of men with prostate cancer and their partners: a review of the literature.
        Cancer Nursing. 2002; 25: 35-41
        • Eriksson E.
        • Lauri S.
        Informational and emotional support for cancer patients’ relatives.
        European Journal of Cancer Care. 2000; 9: 8-15
        • Eriksson E.
        • Arve S.
        • Lauri S.
        Informational and emotional support received by relatives before and after the cancer patient’s death.
        European Journal of Oncology Nursing. 2006; 10: 48-58
        • Fukui S.
        Information needs and the related characteristics of Japanese family caregivers of newly diagnosed patients with cancer.
        Cancer Nursing. 2002; 25: 181-186
        • Gozum S.
        • Akcay D.
        Responses to the needs of Turkish chemotherapy patients and their families.
        Cancer Nursing. 2005; 28: 469-475
        • Hilton B.
        • Crawford J.
        • Tarko M.
        Men’s perspective on individual and family coping with their wics breast cancer and chemotherapy.
        Western Journal of Nursing Research. 2000; 22: 438-459
        • Hughes L.
        • Hodgson N.
        • Muller P.
        • Robinson L.
        • McCorkle R.
        Information needs of elderly postsurgical cancer patient during the transition from hospital to home.
        Journal of Nursing Scholarship. 2000; 32: 25-30
        • Iconomou G.
        • Vagenakis A.
        • Kalofonos H.
        The information needs, satisfaction with communication, and psychological status of primary caregives of cancer patients receiving chemotherapy.
        Supportive Care in Cancer. 2001; 9: 591-596
        • Isaksen A.
        • Thuen F.
        • Hanestad B.
        Patients with cancer and their close relatives: experiences with treatment care and support.
        Cancer Nursing. 2003; 26: 68-74
        • Kadmon I.
        • Ganz F.
        • Rom M.
        • Woloski-Wruble A.
        Social, marital, and sexual adjustment of Israeli men whose wives were diagnosed with breast cancer.
        Oncology Nursing Forum. 2008; 35: 131-135
        • Kimberlin C.
        • Brushwood D.
        • Allen W.
        • Radson E.
        • Wilson D.
        Cancer patient and caregiver experiences: communication and pain management issues.
        Journal of Pain and Symptom Management. 2004; 28: 567-576
        • Kirk P.
        • Kirk K.
        • Kristijanson L.
        What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study.
        British Medical Journal. 2004; 328: 1-7
        • Marinson I.
        • Widmer A.
        • Portillo C.
        Home Health Care Nursing.
        second ed. Saunders, Philadelphia2002
        • Mason J.
        Cancer in Context: a Practical Guide to Supportive Care.
        Oxford Medical Publications, London2004
        • Mason T.
        Information needs of wives of men following prostatectomy.
        Oncology Nursing Forum. 2005; 32: 557-563
        • Mason T.
        Wives of men with prostate cancer postbrachytherapy.
        Cancer Nursing. 2008; 31: 32-37
        • Mcilfatrick S.
        • Sullivan K.
        • McKenna H.
        What about carers?: exploring the experience of caregivers in a chemotherapy day hospital setting.
        European Journal of Oncology Nursing. 2006; 10: 294-303
        • Mitchell T.
        The social and emotional toll of chemotherapy – patients’ perspectives.
        European Journal of Cancer Care. 2007; 16: 39-47
        • Morris S.
        • Thomas C.
        The carers place in the cancer situation: where does the care stand in the medical setting?.
        European Journal of Cancer Care. 2001; 10: 87-95
        • Morris S.
        • Thomas C.
        The need to know: informal carers and information.
        European Journal of Cancer Care. 2002; 11: 183-187
        • Nikoletti S.
        • Kristjanson L.
        • Tataryn D.
        • Burt L.
        Information needs and coping styles of primary family caregivers of women following breast cancer surgery.
        Oncology Nursing Forum. 2003; 30: 987-996
        • Persson E.
        • Severinsson E.
        • Hellstrom A.
        Spouses’ perceptions of and reactions to living with a partner who has undergone surgery for rectal cancer resulting in a stoma.
        Cancer Nursing. 2004; 27: 85-90
        • Pistrang N.
        • Barker C.
        The partner relationship in psychological response to breast cancer.
        Social Science and Medicine. 1995; 40: 789-797
        • Pitceathly C.
        • Maguire P.
        The psychological impact of cancer on patients partners and other key relatives: a review.
        European Journal of Cancer Care. 2003; 39: 1517-1524
        • Rees C.
        • Bath P.
        The information needs and source preferences of women with breast cancer and their family members: a review of the literature published between 1988 and 1998.
        Journal of Advanced Nursing. 2000; 31: 833-841
        • Rees C.
        • Bath P.
        Exploring the information flow: partners of women with breast cancer, patients, and healthcare professionals.
        Oncology Nursing Forum. 2000; 27: 1267-1275
        • Rees C.
        • Bath P.
        Meeting the information needs of daughters of women with early breast cancer: patients and health care professionals as providers.
        Cancer Nursing. 2000; 23: 71-79
        • Rees C.
        • Sheard C.
        • Echlin K.
        The relationship between the information-seeking behaviours and information needs of partners of men with prostate cancer: a pilot study.
        Patient Education and Counseling. 2003; 49: 257-261
        • Rogers A.
        • Karlsen S.
        • Addington-Hall J.
        All the services were excellent. It is when the human element comes in that things go wrong.
        Journal of Advanced Nursing. 2000; 31: 768-774
        • Royak-Schaler R.
        • Gadalla S.
        • Lemkau J.
        • Ross D.
        • Alexander C.
        • Scott D.
        Family perspectives on communication with healthcare providers during end-of-life cancer care.
        Oncology Nursing Forum. 2006; 33: 753-760
        • Salminen E.
        • Vire J.
        • Poussa T.
        • Knifsund S.
        Unmet needs in information flow between breast cancer patients, their spouses, and physicians.
        Support Care Cancer. 2004; 12: 663-668
      1. Schmid-Buchi, S., Halfens, R., Dassen, T., van den Borne, B. Psychosocial problems and needs of posttreatment patients with breast cancer and their relatives. European Journal of Oncology Nursing, in press, doi:10.1016/j.ejon.2009.11.001.

        • Slevin M.
        • Nichols S.
        • Downer S.
        • Wilson P.
        • Lister T.
        • Arnott S.
        Emotional support for cancer patients: what do patients really want?.
        British Journal of Cancer. 1996; 74: 1275-1279
        • Soothill K.
        • Morris S.
        • Thomas C.
        • Harman J.
        • Francis B.
        The universal, situational, and personal needs of cancer patients and their main carers.
        European Journal of Oncology Nursing. 2003; 7: 5-13
        • Swore Fletcher B.
        • Dodd M.
        • Schumacher K.
        • Miaskowski C.
        Symptom experience of family caregivers of patients with cancer.
        Oncology Nursing Forum. 2008; 35: E23-E44
        • Vallerand A.
        • Collins-Bohler D.
        • Templin T.
        • Hasenau S.
        Knowledge of the barriers to pain management in caregivers of cancer patients receiving homecare.
        Cancer Nursing. 2007; 30: 31-37
        • Wideheim A.
        • Edvardsson T.
        • Pahlson A.
        • Ahlstrom G.
        A family’s perspective on living with a highly malignant brain tumour.
        Cancer Nursing. 2002; 25: 236-244
        • Woloski-Wruble A.
        • Kadmon I.
        Breast cancer: reactions of Israeli men to their wives’ diagnosis.
        European Journal of Oncology Nursing. 2002; 6: 93-99
        • World Health Organisation
        Palliative Care: the Solid Facts.
        World Health Organisation Regional Office for Europe, Copenhagen2004