End-of-life care in Italy: Personal experience of family caregivers. A content analysis of open questions from the Italian Survey of the Dying of Cancer (ISDOC)

Psycho-Oncology

Volumn 17, Issue 11, 2008, Pages 1073-1080

  Morasso, Gabriella ^a   Costantini, Massimo ^a   di Leo, Silvia ^a   Roma, Serena ^a   Miccinesi, Guido ^b   Merlo, Domenico Franco ^a   Beccaro, Monica ^a  

^a UNIVERSITY OF GENOA   (Italy)

^b CANCER RESEARCH AND PREVENTION INSTITUTE ISPO   (Italy)

Author keywords

Cancer; Family caregiver; Oncology; Personal experience; Post bereavement survey

Indexed keywords

ADULT; AGED; ANGER; ARTICLE; BREAST TUMOR; CANCER MORTALITY; CAREGIVER BURDEN; CAREGIVER SUPPORT; CONTENT ANALYSIS; CONTROLLED STUDY; DIGESTIVE SYSTEM TUMOR; DISTRESS SYNDROME; EMOTIONALITY; FAMILY RELATION; FAMILY STRESS; FEAR; FEMALE; GUILT; HEAD AND NECK TUMOR; HEMATOLOGIC MALIGNANCY; HUMAN; INTERVIEW; ITALY; MAJOR CLINICAL STUDY; MALE; MENTAL STRESS; NEOPLASM; PERSONAL EXPERIENCE; PHYSICAL STRESS; POWERLESSNESS; RESPIRATORY TRACT TUMOR; SELF CONCEPT; TERMINAL CARE; TERMINALLY ILL PATIENT; UROGENITAL TRACT TUMOR;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; BEREAVEMENT; CAREGIVERS; CONSUMER SATISFACTION; COST OF ILLNESS; EMOTIONS; FAMILY CONFLICT; FEMALE; HEALTH SURVEYS; HUMANS; INTERVIEW, PSYCHOLOGICAL; ITALY; MALE; MIDDLE AGED; NEOPLASMS; SOCIAL SUPPORT; TERMINAL CARE; YOUNG ADULT;

EID: 57649174190     PISSN: 10579249     EISSN: 10991611     Source Type: Journal    
DOI: 10.1002/pon.1332     Document Type: Article

References (33)

1. Blanchard CG, Albrecht TL, Ruckdeschel JC. The crisis of cancer: psychological impact on family caregivers. Oncology 1997; 11(2):189-194.
2. Payne S, Smith P, Dean S. Identifying the concerns of informal carers in palliative care. Palliat Med 1999; 13(1):37-44.
3. Weitzner MA, McMillan SC, Jacobsen RB. Family caregiver quality of life: differences between curative and palliative cancer treatment settings. J Pain Symptom Manage 1999;17(6):418-428.
4. Aranda SK, Hayman-White K. Home caregivers of the person with advanced cancer: an Australian perspective. Cancer Nurs 2001; 24(4):300-307.
5. Cameron JI, Franche RL, Cheng AM, Stewart DE. Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 2002; 94(2):521-527.
6. Brazil K, Bedard M, Willison K, Hode M. Caregiving and its impact on families of terminally ill. Aging Ment Health 2003; 7(5):376-382.
7. Rossi Ferrario S, Cardillo V, Vicario F, Balzarini E, Zotti AM. Advanced cancer at home: caregiving and bereavement. Palliat Med 2004; 18(2):129-136.
8. Redinbaugh EM, Baum A, Tarbell S, Arnold R. End-of-life caregiving: what helps family caregivers cope? J Palliat Med 2003; 6(6):901-909.
9. Strang VR, Koop PM. Factors which influence coping: home-based family caregiving of persons with advanced cancer. J Palliat Care 2003; 19(2):107-114.
10. Proot IM, Abu-Saad HH, Crebolder HF, Goldsteen M, Luker KA, Widdershoven GA. Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scand J Caring Sci 2003;17(2):113-121.
11. Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, van der Bos Ga. Cancer and caregiving: the impact on the caregiver's health. Psycho-Oncology 1998;7(1):3-13.
12. Costantini M, Beccaro M, Merlo F. The last three months of life of Italian cancer patients: methods, sample characteristics and response rate of the Italian survey of the dying of cancer (ISDOC). Palliat Med 2005;19:628-638.
13. Addington-Hall J, Walker L, Jones C, Karlsen S, McCarthy M. A randomised controlled trial of postal versus interviewer administration of a questionnaire measuring satisfaction with, and use of, services received in the year before death. J Epidemiol Commun Health 1998; 52:802-807.
14. Garcia JO, Evans J, Reshaw M. Is there anything else you would like to tell us - methodological issues in the use of free-text comments from postal surveys. Qual Quant 2004;38:113-125.
15. Malagoli Togliatti M, Telfener U (eds). Dall'individuo al sistema. Bollati Boringhieri: Torino, 1991.
16. Rossi Ferrario S, Zotti AM, Massara G, Nuvolone G. A comparative assessment of psychological characteristics of cancer patients and their caregivers. Psycho-Oncology 2003;12(1):1-7.
17. Siegel K, Karus DG, Raveis VH, Christ GH, Mesagno FP. Depressive distress among the spouses of terminally ill cancer patients. Cancer Pract 1996;4(1):25-30.
18. Axelsson B, Sjoden PO. Quality of life of cancer patients and their spouses in palliative home care. Palliat Med 1998; 12(1):29-39.
19. Carter PA, Chang BL. Sleep and depression in cancer caregivers. Cancer Nurs 2000;23(6):410-415.
20. Chentsova-Dutton Y, Shucter S, Hutchin S et al. Depression and grief reactions in hospice caregivers: from pre-death to 1 year afterwards. J Affect Disord 2002;69(1-3):53-60.
21. Koop PM, Strang VR. The bereavement experience following home-based family caregiving for persons with advanced cancer. Clin Nurs Res 2003;12(2): 127-144.
22. Grbich C, Parker D, Maddocks I. The emotions and coping strategies of caregivers of family members with a terminal cancer. J Palliat Care 2001;17(1):30-36.
23. Emanuel EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanuel LL. Assistance from family members, friends, paid caregivers, and volunteers in the care of terminally ill patients. N Engl J Med 1999; 341(13):956-963.
24. Stajduhar KI, Davies B. Variations in and factors influencing family members' decisions for palliative home care. Palliat Med 2005; 19(1):21-32.
25. Stajduhar KI. Examining the perspectives of family members involved in the delivery of palliative care at home. J Palliat Care 2003; 19(1):27-35.
26. Shulman-Green D, McCorkle R, Curry L, Cherlin E, Johnson-Hurzeler R, Bradley E. At the crossroads: making the transition to hospice. Palliat Support Care 2004;2(4):351-360.
27. Zhang AY, Siminoff LA. The role of the family in treatment decision making by patients with cancer. Oncol Nurs Forum 2003; 30(6):1022-1028.
28. Hauser JM, Chang CH, Alpert H, Baldwin D, Emanuel EJ, Emanuel L. Who's caring for whom? Differing perspectives between seriously ill patients and their family caregivers. Am J Hosp Palliat Care 206; 23(2):105-112.
29. Zhang AY, Siminoff LA. Silence and cancer: why do families and patients fail to communicate? Health Commun 2003;15(4):415-429.
30. Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 2002; 16(4):297-303.
31. Costantini M, Morasso G, Montella M et al. Diagnosis and prognosis disclosure among cancer patients. Results from an Italian mortality follow-back survey. Ann Oncol 2006;17(5):853-859.
32. Harding R, Higginson I. Working with ambivalence: informal caregivers of patients at the end of life. Support Care Cancer 2001; 9:642-645.
33. Porter LS, Francis JK, Lipkus I, Hurwitz H. Ambivalence over emotional expression in patients with gastrointestinal cancer and their caregivers: associations with patient pain and quality of life. Pain 2005;117: 340-348.