Enhancing patient participation of older migrant cancer patients: needs, barriers, and eHealth

The purpose of this study was to explore the views and experiences of adult cancer patients about patient participation in care and decision making and the preconditions for this participation. The data were collected by means of focused interviews; in addition the patients completed depression and problem-solving instruments. The sample comprised 34 cancer patients from the haematological and oncological wards of one university hospital in Finland. The results revealed considerable variation in the patients’ views on their participation in care and decision making. Some of the patients understood participation either in terms of contributing to the decision making or in terms of expressing their views on treatment options. Some considered that their participation in care was impossible. Patient participation in care and decision making was promoted by good health, access to information, assertiveness, good interactive relationships with nurses and physicians, and encouragement by nurses and physicians to participate. Factors restricting such patient participation were poor health, ignorance, anxiety, age, time pressures of staff, lack of time, high staff turnover and poor interactive relationships. With regard to participation in medical decision making, the patients were divided into three groups: (1) active participants ( n = 7), (2) patients giving active consent ( n = 9), and (3) patients giving passive consent to medical decisions ( n = 18).

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The Relationship Between Health Literacy and Patient Participation in Medical Decision Making Among Breast Cancer Patients

Archives of Breast Cancer ◽

10.32768/abc.201854183-188 ◽

2018 ◽

pp. 183-188 ◽

Cited By ~ 1

Author(s):

Mahnaz Yadollahi ◽

Elham Siavashi ◽

Somayeh Mostaghim

Keyword(s):

Breast Cancer ◽

Health Literacy ◽

Cancer Patients ◽

Patient Participation ◽

Pearson Correlation ◽

Decisional Conflict ◽

Medical Decision ◽

Breast Cancer Patients ◽

Medical Decisions ◽

The Relationship

Background: Patient participation in medical decisions is essential and requires sufficient knowledge and awareness. Thus, the aim of this study was to investigate the relationship between health literacy and the participation of breast cancer patients in their medical decisions in Shiraz, Iran. Methods: This was a descriptive-analytical study conducted on 196 women with breast cancer in 2016-2017. Data were collected using the standardized Health Literacy for Iranian Adults (HELIA) and the Decisional Conflict Scale. The data were analyzed using descriptive statistics and inferential methods (t test, Pearson correlation, ANOVA, and Kruskal-Wallis) on SPSS 21. Results: The mean age of participants was 46.7 years. Their health literacy was inadequate (18.7) and their decisional conflict was average (51.79). There was also an inverse and significant relationship between health literacy and decisional conflict (P < 0.001, r = -0.81) Conclusion: Increasing health literacy could reduce decisional conflict. It requires training individuals be able to access credible and reliable sources of information. This training can be provided through doctors, treatment staff, and public and social media.

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Cancer Patients’ Perceptions of the Barriers and Facilitators to Patient Participation in Symptom Management During an Episode of Admission

Cancer Nursing ◽

10.1097/ncc.0000000000000226 ◽

2015 ◽

Vol 38 (6) ◽

pp. 458-465 ◽

Cited By ~ 5

Author(s):

Emma Cohen ◽

Mari Botti

Keyword(s):

Cancer Patients ◽

Patient Participation ◽

Symptom Management ◽

Barriers And Facilitators

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The Relationship Between Health Literacy and Patient Participation in Medical Decision Making Among Breast Cancer Patients

Archives of Breast Cancer ◽

10.32768/abc.201854181-186 ◽

2018 ◽

pp. 181-186

Author(s):

Mahnaz Yadollahi ◽

Elham Siavashi ◽

Somayeh Mostaghim

Keyword(s):

Breast Cancer ◽

Health Literacy ◽

Cancer Patients ◽

Patient Participation ◽

Pearson Correlation ◽

Decisional Conflict ◽

Medical Decision ◽

Breast Cancer Patients ◽

Medical Decisions ◽

The Relationship

Background: Patient participation in medical decisions is essential and requires sufficient knowledge and awareness. Thus, the aim of this study was to investigate the relationship between health literacy and the participation of breast cancer patients in their medical decisions in Shiraz, Iran. Methods: This was a descriptive-analytical study conducted on 196 women with breast cancer in 2016-2017. Data were collected using the standardized Health Literacy for Iranian Adults (HELIA) and the Decisional Conflict Scale. The data were analyzed using descriptive statistics and inferential methods (t test, Pearson correlation, ANOVA, and Kruskal-Wallis) on SPSS 21. Results: The mean age of participants was 46.7 years. Their health literacy was inadequate (18.7) and their decisional conflict was average (51.79). There was also an inverse and significant relationship between health literacy and decisional conflict (P < 0.001, r = -0.81) Conclusion: Increasing health literacy could reduce decisional conflict. It requires training individuals be able to access credible and reliable sources of information. This training can be provided through doctors, treatment staff, and public and social media.

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When the Treatment Goal Is Not Cure: Are Cancer Patients Equipped to Make Informed Decisions?

Journal of Clinical Oncology ◽

10.1200/jco.2002.20.2.503 ◽

2002 ◽

Vol 20 (2) ◽

pp. 503-513 ◽

Cited By ~ 133

Author(s):

Melina Gattellari ◽

Katie J. Voigt ◽

Phyllis N. Butow ◽

Martin H.N. Tattersall

Keyword(s):

Decision Making ◽

Cancer Patients ◽

Patient Participation ◽

Informed Decision ◽

Decision Making Process ◽

Informed Decision Making ◽

Coding System ◽

Incurable Cancer ◽

Anticancer Treatment ◽

Anxiety Levels

PURPOSE: Informed decision making now is considered the underpinning of ethical medical practice. We aimed to determine the extent to which patients with incurable cancer are adequately informed of their prognosis and treatment options and encouraged to participate in treatment decisions. PATIENTS AND METHODS: One hundred eighteen cancer patients with incurable disease presenting for an initial consultation with one of nine oncologists at two Sydney tertiary referral hospitals participated in the study. Consultations were recorded on audiotape to permit a content analysis of doctor-patient interactions. We devised a coding system to assess disclosure of information and to evaluate doctor encouragement of patient participation in treatment decision making. Patient recall, satisfaction, anxiety, and perceptions of the decision-making process were assessed to determine the effects of informed decision making on patient outcomes. RESULTS: Most patients were informed about the aim of anticancer treatment (84.7%), that their disease was incurable (74.6%), and about life expectancy (57.6%). An alternative to anticancer treatments was presented to 44.1%, 36.4% were informed about how anticancer treatment would affect quality of life, and 29.7% were offered a management choice. Oncologists checked patient understanding in only 10.2% of consultations. Although greater information disclosure did not seem to elevate anxiety levels, greater patient participation in the decision-making process was associated with increased anxiety levels (P = .0005), which persisted over a 2-week time span. CONCLUSION: Most patients were well informed, but important gaps remain, especially concerning information about prognosis and alternatives to anticancer treatment. These gaps invite the question concerning whether patients are led toward anticancer treatment.

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