Top

Supportive Care in Cancer

Published in:

01-10-2015 | Original Article

Health information wanted and obtained from doctors/nurses: a comparison of Chinese cancer patients and family caregivers

Authors: Bo Xie, Zhaohui Su, Yihao Liu, Mo Wang, Ming Zhang

Published in: Supportive Care in Cancer | Issue 10/2015

Abstract

Purpose

To assess and compare health information wanted and obtained from doctors/nurses by Chinese cancer patients and family caregivers. Research questions: (1) What are the instrument’s psychometrics in Chinese cancer patients and family caregivers? (2) How might Chinese cancer patients and family caregivers differ in the amount of different types of health information they want to have? and (3) How might Chinese cancer patients and family caregivers differ in the amount of different types of information they were able to obtain from doctors/nurses?

Methods

This was a cross-sectional study using a paper-pen questionnaire. A total of 198 participants (79 cancer patients; 119 family caregivers) from a general hospital in Sichuan, China completed the instrument in March 2014.

Results

The instrument has excellent reliability and validity. Participants wanted to have a wide range of health information, including but not limited to information about diagnosis or treatment. Across all types of information, participants obtained from doctors/nurses significantly less than what they wanted. The discrepancy between information wanted and obtained varied across different types of information. The discrepancy was largest for information about complementary and alternative medicine (CAM) and psychosocial aspects and smallest for information about diagnosis and self-care. Patients and caregivers did not differ in the amount of different types of information they wanted or obtained from medical professionals.

Conclusions

There is a great need for providing more information to both patients and their families, particularly information about CAM and psychosocial aspects.

Chen W, Zheng R, Zhang S, Zhao P, Zeng H, Zou X, He J (2014) Annual report on status of cancer in China, 2010. Chin J Cancer Res 26(1):48–58, http://www.ncbi.nlm.nih.gov/pubmed/24653626PubMedCentralPubMed

Lam WWT, Fabrizio C, Ho E, Chan L, Fielding R (2009) Perceived importance of evidence-based psychosocial clinical guidelines for Hong Kong Chinese women with breast cancer: opinions of patients and health care providers. Support Care Int 17:219–229CrossRef

Tang ST, Liu T-W, Liu L-N, Chen C-H, Koong S-L (2006) Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan. Cancer Investig 24:360–366CrossRef

Echlin KN, Rees CE (2002) Information needs and information-seeking behaviors of men with prostate cancer and their partners: a review of the literature. Cancer Nurs 25:35–41CrossRefPubMed

Sellergren SA, Manfredi C, Williams M (2002) Factors influencing medical information-seeking among African American patients with cancer. J Health Commun 7:205–219CrossRefPubMed

Grahn G (1996) Patient information as a necessary therapeutic intervention. Eur J Cancer Care 5(1):7–8CrossRef

Li WWY, Lam WWT, Au AHY, Ye M, Law WL, Poon J, Kwong A, Suen D, Tsang J, Girgis A et al (2013) Interpreting differences in patterns of supportive care needs between patients with breast cancer and patients with colorectal cancer. Psycho-Oncology 22:792–798CrossRefPubMed

So WKW, Chan CWH, Choi KC, Wan RWM, Mak SSS, Chair SY (2013) Perceived unmet needs and health-related quality of life of Chinese cancer survivors at 1 year after treatment. Cancer Nurs 36(3):E23–E32CrossRefPubMed

Hack TF, Degner LF, Parker PA, The SCRN Communication Team (2005) The communication goals and needs of cancer patients: a review. Psycho-Oncology 14:831–845CrossRefPubMed

10.

Qiu W-L, Lin P-J, Ruan F-Q, Wu X, Lin M-P, Liu L, Luo J-Y, Lin K (2013) Requests for health education from Chinese cancer patients during their recovery period: a cross-sectional study. J Cancer Educ 28:428–434CrossRefPubMed

11.

Au A, Lam W, Tsang J, Yau T, Soong I, Yeo W et al (2013) Supporting care needs in Hong Kong Chinese women confronting advanced breast cancer. Psycho-Oncology 22:1144–1151CrossRefPubMed

12.

Pang MS (1999) Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions. J Med Ethics 25:247–253PubMedCentralCrossRefPubMed

13.

Liu J-E, Mok E, Wong T (2005) Perceptions of supportive communication in Chinese patients with cancer: experiences and expectations. J Adv Nurs 52(3):262–270CrossRefPubMed

14.

Smith D, Smith SJ (1999) Chinese elders’ communication about medicine. Health Commun 11:237–248CrossRef

15.

Nilchaikovit T (1991) An Asian view of how illness is lived. Int J Psycho-Oncology Soc Newsl 1:6–14

16.

Lee RN (1986) The Chinese perception of mental illness in the Canadian mosaic. Can Ment Health 43(40):2–4

17.

Henderson A, Chien W-T (2004) Information needs of Hong Kong Chinese patients undergoing surgery. J Clin Nurs 13:960–966CrossRefPubMed

18.

Jiang Y et al (2007) Different attitudes of Chinese patients and their families toward truth telling of different stages of cancer. Psycho-Oncology 16:928–936CrossRefPubMed

19.

Yun YH, Lee CC, Kim SY et al (2004) The attitudes of cancer patients and their families toward the disclosure of terminal illness. J Clin Oncol 22:307–314CrossRefPubMed

20.

Noone I, Crowe M, Pillay I, O’Keeffe ST (2000) Telling the truth about cancer: views of elderly patients and their relatives. Ir Med J 93:104–105PubMed

21.

McNutt RA (2004) Shared medical decision making: problems, process, progress. J Am Med Assoc 292:2516–2518CrossRef

22.

Charles C, Gafni A, Whelan T (1999) Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med 49:651–661CrossRefPubMed

23.

Epstein RM, Alper BS, Quill TE (2004) Communicating evidence for participatory decision making. JAMA 291(19):2359–2366CrossRefPubMed

24.

Xie B (2009) Older adults’ health information wants in the Internet age: implications for patient-provider relationships. J Health Commun Int Perspect 14(6):510–524CrossRef

25.

Laine C, Davidoff F, Lewis CE, Nelson EC, Nelson E, Kessler RC, Delbanco TL (1996) Important elements of outpatient care: a comparison of patients’ and physicians’ opinions. Ann Intern Med 125(8):640–645CrossRefPubMed

26.

Heisler M, Vijan S, Anderson RM, Ubel PA, Bernstein SJ, Hofer TP (2003) When do patients and their physicians agree on diabetes treatment goals and strategies, and what difference does it make? J Gen Intern Med 18:893–902PubMedCentralCrossRefPubMed

27.

Xie B, Wang M, Feldman R, Zhou L (2013) Internet use frequency and patient-centered care: measuring patient preferences for participation using the health information wants questionnaire. J Med Internet Res 15:e132PubMedCentralCrossRefPubMed

28.

Xie B, Wang M, Feldman R, Zhou L (in press) Exploring older and younger adults’ preferences for health information and participation in decision making using the health information wants questionnaire (HIWQ). Health Expectations, doi: 10.1111/j.1369-7625.2012.00804.x

29.

Xie B, Watkins I, Golbeck J, Huang M (2012) Understanding and changing older adults’ perceptions and learning of social media. Educ Gerontol 38(4):282–296PubMedCentralCrossRefPubMed

30.

Willis GB (1994) Cognitive interviewing and questionnaire design: a training manual. National Center for Health Statistics, Washington DC

31.

Ende J, Kazis L, Ash A, Moskowitz MA (1989) Measuring patients’ desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med 4(1):23–30CrossRefPubMed

32.

Mystakidou K, Parpa E, Tsilika E, Katsouda E, Vlahos L (2004) Cancer information disclosure in different cultural contexts. Support Care Cancer Off J Multinatl Assoc Support Care Cancer 12:147–154

33.

Jiang Y, Li JY, Liu C et al (2006) Different attitudes of oncology clinicians toward truth telling of different stages of cancer. Support Care Cancer Off J Multinatl Assoc Support Care Cancer 14:1119–1125

34.

Dai Q (2003) Informed consent in China: status quo and its future. Med Law Int 6:53–71CrossRefPubMed

35.

Leung K-K, Chiu T-Y, Chen C-Y (2006) The influence of awareness of terminal condition on spiritual well-being in terminal cancer patients. J Pain Symptom Manag 31(5):449–456CrossRef

36.

Mok E (2001) Empowerment of cancer patients: from a Chinese perspective. Nurs Ethics 8(1):69–76CrossRefPubMed

37.

Beauchamp TL, Childress F (2001) Principles of biomedical ethics, 5th edn. Oxford University Press, New York

38.

Docket No. 315, Item 11. http://www.gov.cn/banshi/2005-08/02/content_19167.htm

39.

Wuensch A, Tang L, Goetz T, Zhang Y, Stubenrauch S, Song L, Hong Y, Zhang H, Wirsching M, Fritzsche K (2013) Breaking bad news in China—the dilemma of patients’ autonomy and traditional norms. A first communication skills training for Chinese oncologists and caretakers. Psycho-Oncology 22:1192–1195CrossRefPubMed

40.

Lee YM, Francis K, Walker JM, Lee SM (2004) What are the information needs of Chinese breast cancer patients receiving chemotherapy? Eur J Oncol Nurs 8:224–233CrossRefPubMed

41.

Nilchaikovit T, Hill JM, Holland JC (1993) The effects of culture on illness behavior and medical care: Asian and American differences. Gen Hosp Psychiatry 15:41–50CrossRefPubMed

42.

Leydon GM (2000) Patients with cancer’s information needs and information seeking behavior: in depth interview study. Br Med J 320:909–913CrossRef

Title: Health information wanted and obtained from doctors/nurses: a comparison of Chinese cancer patients and family caregivers
Authors: Bo Xie
Zhaohui Su
Yihao Liu
Mo Wang
Ming Zhang
Publication date: 01-10-2015
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 10/2015
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-015-2651-7

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 10/2015

Hyponatremia is a predictor of hospital length and cost of stay and outcome in cancer patients

Inpatient infectious disease consultations requested by surgeons at a comprehensive cancer center

Needs of caregivers of cancer patients: validation of the Mexican version of the Support Person Unmet Needs Survey (SPUNS–SFM)

Involvement of supportive care professionals in patient care in the last month of life

Lymphoedema and health-related quality of life by early treatment in long-term survivors of breast cancer. A comparative retrospective study up to 15 years after diagnosis

Hyposmia: an underestimated and frequent adverse effect of chemotherapy

Keynote webinar | Spotlight on antibody–drug conjugates in cancer