Literature DB >> 22526148

The relatives' perspective on advanced cancer care in Denmark. A cross-sectional survey.

Anna T Johnsen1, Lone Ross, Morten A Petersen, Line Lund, Mogens Groenvold.   

Abstract

PURPOSE: In order to improve advanced cancer care, evaluations are necessary. An important element of such evaluations is the perspective of the patient's relatives who have the role of being caregivers as well as co-users of the health care system. The aims were to investigate the scale structure of the FAMCARE scale, to investigate satisfaction with advanced cancer care from the perspective of the relatives of a representative sample of advanced cancer patients, and to investigate whether some sub-groups of relatives were more dissatisfied than others.
METHOD: From 977 patients treated at 54 different Danish hospital departments, 569 patients provided us with the name and address of their relative. Of these, 544 received the FAMCARE scale that measures the families' satisfaction with advanced cancer care. For the four FAMCARE sub-scales, internal consistency was analyzed using Cronbach's alpha; convergent and discriminant validity was analyzed using multitrait-scaling analysis. Associations between the relatives' dissatisfaction and clinical and sociodemographic variables were investigated in explorative analyses using multiple logistic regressions.
RESULTS: Of the relatives receiving the questionnaire, 467 (86%) responded. The original scale structure of FAMCARE could not be supported in the present sample, and therefore, results are reported at singe-item level. The proportion of dissatisfied relatives ranged from 5% to 28% (median 13%). Highest levels of dissatisfaction were found for time taken to make a diagnosis (28%) and the speed with which symptoms were treated (25%). Younger relatives were more dissatisfied than older relatives. Other sociodemographic and clinical variables had little impact on the relatives' levels of satisfaction.
CONCLUSION: The relatives' level of dissatisfaction with some of the areas included in this survey needs to be taken seriously. Younger relatives were most dissatisfied.

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Year:  2012        PMID: 22526148     DOI: 10.1007/s00520-012-1454-3

Source DB:  PubMed          Journal:  Support Care Cancer        ISSN: 0941-4355            Impact factor:   3.603


  32 in total

1.  Comprehensive needs assessment tool in cancer (CNAT): the development and validation.

Authors:  Eun-Jung Shim; Kyung-Sook Lee; Jong-Hyock Park; Jae-Hyun Park
Journal:  Support Care Cancer       Date:  2010-11-14       Impact factor: 3.603

Review 2.  Nationwide veterans affairs quality measure for cancer: the family assessment of treatment at end of life.

Authors:  Esme Finlay; Scott Shreve; David Casarett
Journal:  J Clin Oncol       Date:  2008-08-10       Impact factor: 44.544

3.  Caregiver satisfaction with out-patient oncology services: utility of the FAMCARE instrument and development of the FAMCARE-6.

Authors:  Gregory Leigh Carter; Terry J Lewin; Louisa Gianacas; Kerrie Clover; Catherine Adams
Journal:  Support Care Cancer       Date:  2010-03-28       Impact factor: 3.603

Review 4.  Relatives in end-of-life care--part 1: a systematic review of the literature the five last years, January 1999-February 2004.

Authors:  Birgitta Andershed
Journal:  J Clin Nurs       Date:  2006-09       Impact factor: 3.036

Review 5.  Judging the quality of care at the end of life: can proxies provide reliable information?

Authors:  C J McPherson; J M Addington-Hall
Journal:  Soc Sci Med       Date:  2003-01       Impact factor: 4.634

6.  Palliative care: views of patients and their families.

Authors:  I Higginson; A Wade; M McCarthy
Journal:  BMJ       Date:  1990-08-04

7.  Family experience caring for terminally ill patients with cancer in Hong Kong.

Authors:  Esther Mok; Faye Chan; Vivian Chan; Ellen Yeung
Journal:  Cancer Nurs       Date:  2003-08       Impact factor: 2.592

8.  Are bereaved family members a valid proxy for a patient's assessment of dying?

Authors:  I Higginson; P Priest; M McCarthy
Journal:  Soc Sci Med       Date:  1994-02       Impact factor: 4.634

9.  Measuring quality of palliative care: psychometric properties of the FAMCARE Scale.

Authors:  Gerd Inger Ringdal; Marit S Jordhøy; Stein Kaasa
Journal:  Qual Life Res       Date:  2003-03       Impact factor: 4.147

10.  Distribution and determinants of patient satisfaction in oncology with a focus on health related quality of life.

Authors:  Christopher G Lis; Mark Rodeghier; James F Grutsch; Digant Gupta
Journal:  BMC Health Serv Res       Date:  2009-10-21       Impact factor: 2.655

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  6 in total

1.  Psychometric Properties of a Spanish-Language Version of a Short-Form FAMCARE: Applications to Caregivers of Patients With Alzheimer's Disease and Related Dementias.

Authors:  Jeanne A Teresi; Katja Ocepek-Welikson; Mildred Ramirez; Katherine A Ornstein; Suzanne Bakken; Albert Siu; José A Luchsinger
Journal:  J Fam Nurs       Date:  2019-08-17       Impact factor: 3.818

2.  Use of an Item Bank to Develop Two Short-Form FAMCARE Scales to Measure Family Satisfaction With Care in the Setting of Serious Illness.

Authors:  Katherine A Ornstein; Jeanne A Teresi; Katja Ocepek-Welikson; Mildred Ramirez; Diane E Meier; R Sean Morrison; Albert L Siu
Journal:  J Pain Symptom Manage       Date:  2014-12-27       Impact factor: 3.612

3.  Performance of the Family Satisfaction with the End-of-Life Care (FAMCARE) measure in an ethnically diverse cohort: psychometric analyses using item response theory.

Authors:  Jeanne A Teresi; Katherine Ornstein; Katja Ocepek-Welikson; Mildred Ramirez; Albert Siu
Journal:  Support Care Cancer       Date:  2013-10-05       Impact factor: 3.603

4.  Evaluation of measurement equivalence of the Family Satisfaction with the End-of-Life Care in an ethnically diverse cohort: tests of differential item functioning.

Authors:  Jeanne A Teresi; Katja Ocepek-Welikson; Mildred Ramirez; Marjorie Kleinman; Katherine Ornstein; Albert Siu
Journal:  Palliat Med       Date:  2014-08-26       Impact factor: 4.762

5.  Relatives' level of satisfaction with advanced cancer care in Greenland - a mixed methods study.

Authors:  Mikaela Augustussen; Lise Hounsgaard; Michael Lynge Pedersen; Per Sjøgren; Helle Timm
Journal:  Int J Circumpolar Health       Date:  2017       Impact factor: 1.228

6.  The quality of care of the dying in hospital-next-of-kin perspectives.

Authors:  Maria Heckel; Annika R Vogt; Stephanie Stiel; Johannes Radon; Sandra Kurkowski; Swantje Goebel; Christoph Ostgathe; Martin Weber
Journal:  Support Care Cancer       Date:  2020-05-09       Impact factor: 3.603

  6 in total

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