Experiences of involvement in decision-making for patients with breast cancer. A phenomenological-hermeneutical study

2018 ◽  
Vol 6 (2) ◽  
pp. 237 ◽  
Author(s):  
Nausheen Christoffersen ◽  
Karina Olling ◽  
Karina Dahl Steffensen ◽  
Regner Birkelund
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Health Professionals ◽  
Patient Involvement ◽  
Structured Interview ◽  
Decision Making Process ◽  
Shared Decision ◽  
The Individual ◽  
Cancer Experience

Background: Patient involvement, including shared decision-making (SDM), has become a key topic in the healthcare system. Only a few studies have been conducted in Denmark on how women with breast cancer experience being involved in the decision-making process during their treatment.Aim: The aim of the study was therefore to explore patients’ experiences in the decision-making process during their treatment course and whether or not it was clear to the individual patient that they had a choice.Methods: The study is based on a qualitative semi-structured interview of 7 patients with breast cancer conducted during February 2017 at a regional hospital for cancer treatment. The design is phenomenological-hermeneutic with inspiration from Ricoeur’s interpretation theory.Results: Through analysis and interpretation of the interviews, 2 themes were identified: (1) Real choice or course determined by the health professionals and (2) Treatment efficiency at the expense of time for consideration for options. The patients experienced that there was neither time for consideration in relation to their treatment, nor time to reflect on their situation. In the decision-making situations, most of the patients felt that they gave their consent only to a treatment course organized by the health professionals. They did not feel that they had a choice, but rather that participation was a prerequisite for getting well.Conclusions: The results of this study can contribute to the improvement of person-centered care and treatment by illustrating patient attitudes to the shared decision-making process and indicating where patient education would play a crucial role in increasing patient involvement in decisions about their care.

scholarly journals Evaluation of the Use of Shared Decision Making in Breast Cancer: International Survey

2021 ◽  
Vol 18 (4) ◽  
pp. 2128
Author(s):  
Marta Maes-Carballo ◽  
Manuel Martín-Díaz ◽  
Luciano Mignini ◽  
Khalid Saeed Khan ◽  
Rubén Trigueros ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Health Professionals ◽  
Cross Sectional Study ◽  
Shared Decision ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Professional Societies ◽  
New Policies

Objectives: To assess shared decision-making (SDM) knowledge, attitude and application among health professionals involved in breast cancer (BC) treatment. Materials and Methods: A cross-sectional study based on an online questionnaire, sent by several professional societies to health professionals involved in BC management. There were 26 questions which combined demographic and professional data with some items measured on a Likert-type scale. Results: The participation (459/541; 84.84%) and completion (443/459; 96.51%) rates were high. Participants strongly agreed or agreed in 69.57% (16/23) of their responses. The majority stated that they knew of SDM (mean 4.43 (4.36–4.55)) and were in favour of its implementation (mean 4.58 (4.51–4.64)). They highlighted that SDM practice was not adequate due to lack of resources (3.46 (3.37–3.55)) and agreed on policies that improved its implementation (3.96 (3.88–4.04)). The main advantage of SDM for participants was patient satisfaction (38%), and the main disadvantage was the patients’ paucity of knowledge to understand their disease (24%). The main obstacle indicated was the lack of time and resources (40%). Conclusions: New policies must be designed for adequate training of professionals in integrating SDM in clinical practice, preparing them to use SDM with adequate resources and time provided.

The Effect of Previsit Education in Breast Cancer Patients: A Study of a Shared-decision-making Tool

2016 ◽  
Vol 82 (3) ◽  
pp. 259-265 ◽  
Author(s):  
Victoria Serpico ◽  
Amy E. Liepert ◽  
Kenneth Boucher ◽  
Diane L. Fouts ◽  
Layla Anderson ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Cancer Biology ◽  
Decision Making Process ◽  
Evidence Based ◽  
Shared Decision ◽  
Group 2 ◽  
New Diagnosis ◽  
Group 1

To enhance shared decision-making for patients with breast cancer, we developed an evidence-based educational breast cancer video (BCV) providing an overview of breast cancer biology, prognostic indicators, and surgical treatment options while introducing health care choice. By providing patients access to a BCV with information necessary to make informed surgical decisions before seeing a surgeon, we aimed to increase patient participation in the decision-making process, while decreasing distress. Patients with a new diagnosis of breast cancer were provided a link to the BCV. Group 1 participated in online pre- and postvideo questionnaires, with the BCV embedded in between. The questionnaires evaluated self-reported baseline knowledge of breast cancer and perceived distress related to the diagnosis. Changes in self-reported responses were analyzed using the Wilcoxon matched pairs test. Group 2 received a survey collecting demographics, decision-making information, and perceptions of the BCV at the time of clinic visit before meeting the surgeon. Group 1 included 69 subjects with 62 per cent reporting improved knowledge and 30 per cent reporting reduced distress in regard to their breast cancer diagnosis. Group 2 included 87 subjects; 94 to 98 per cent felt the BCV provided information and stimulated thoughts and questions to assist in breast cancer treatment decision-making. The BCV was positively received by participants and feasible to implement into clinical practice. Evidence-based media tools improve knowledge and reduce distress in patients with a new diagnosis of breast cancer as well as contributing to the shared decision-making process.

scholarly journals Recurrence of endometrial cancer in a hysterectomised patient treated with tamoxifen for breast cancer: a case report

2020 ◽  
Vol 113 (11) ◽  
pp. 454-456 ◽  
Author(s):  
James Woolas ◽  
Megan Davis ◽  
Siavash Rahimi
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Endometrial Cancer ◽  
Case Report ◽  
Medical History ◽  
Shared Decision Making ◽  
Decision Making Process ◽  
Shared Decision ◽  
Past Medical History ◽  
The Past

Tamoxifen exposure is a recognised risk for primary endometrial cancer. This case serves as a reminder to meticulously check the past medical history and inform patients of the risk-benefit of treatment as part of a shared-decision making process.

scholarly journals OP0261-PARE BIOSIMILAR SWITCHING PROCESS - UK PATIENTS’ EXPERIENCE STUDY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 164.1-164
Author(s):  
C. Jacklin ◽  
A. Bosworth
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Professional Training ◽  
Online Survey ◽  
Pharmaceutical Companies ◽  
Decision Making Process ◽  
Shared Decision ◽  
Patient Organisations ◽  
Advisory Boards ◽  
The Individual

Background:The introduction of 4 adalimumab biosimilars was challenging for the health service and patients alike. A group of patient organisations representing rheumatology, dermatology and gastroenterology patients worked with NHS England in producing materials for disseminating information to prescribers and patients to ensure smooth and appropriate transition to biosimilar products from the originator product as appropriate. These patient groups wanted to know how the ‘switch’ process was implemented and if shared decision making was practiced.Objectives:To gather patient feedback on biosimilar switch process and report findings back to NHS England as well as provide the patient organisations information to develop any future resources to help improve patient and physician shared decision making.Methods:A working group of the 4 organisations collaborated on designing an online survey asking questions around how the individual was communicated with regarding their treatment being switched to a biosimilar; was there any choice or perceived input into the decision making process; how queries or issues were handled and overall satisfaction on how the individual felt their personal preferences/needs were met.Results:899 useable responses were gathered representing 52% Rheumatology patients; 42% Gastroenterology patients and 5% Dermatology patients with remaining 1% more complex specialties. More than half of patients were not asked for their consent before their treatment was switched to a biosimilar of adalimumab with only 40% giving consent 7% couldn’t remember or were unsure if consent was given. 75% were not at all satisfied or not satisfied with the ability to decline being switched with only 12% feeling that they had been given an option to decline being switched.Conclusion:Shared Decision Making (SDM) needs to be put into action not just words. There is a clear majority that are dissatisfied with the communication they had prior to the switch and are very dissatisfied with the lack of patient engagement in the decision-making process. NRAS, NASS, Crohn’s & Colitis UK and the Psoriasis Association will continue to collaborate with NHS England and other stakeholders as appropriate to make Shared Decision Making a reality not just rhetoric.Acknowledgments:National Axial Spondyloarthritis Society UK; Crohns’ & Colitis UK;Psorarsis Association, UK; National Rheumatoid Arthritis SocietyDisclosure of Interests:Clare Jacklin Grant/research support from: NRAS has received grants from pharmaceutical companies to carry out a number of projects, Consultant of: I have been paid a speakers fee to participate in advisory boards, in house training of staff and health professional training opportunities, Speakers bureau: Various pharma companies, Ailsa Bosworth Speakers bureau: a number of pharmaceutical companies for reasons of inhouse training, advisory boards etc.

Who Controls the Message?

2019 ◽  
pp. 319-329
Author(s):  
Deanna J. Attai ◽  
Johanna Pas ◽  
Kwanele Asante-Shongwe ◽  
Liz O'Riordan ◽  
Carol Benn ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Cancer Survivors ◽  
Shared Decision Making ◽  
Breast Cancer Survivors ◽  
Patient Involvement ◽  
Care Pathway ◽  
Shared Decision ◽  
Newly Diagnosed ◽  
Patient Surveys

Abstract: The increasing numbers of breast cancer survivors from newly diagnosed to metastatic requires more personalised management by the medical breast cancer community. The increasing numbers of breast cancer survivors from newly diagnosed to metastatic requires more personalised management by the medical breast cancer community. Whereas oncology specialists provide useful information, patients may not hear it. An equal partnership between patients and their doctors is proposed. Patient involvement is more than patient surveys. Patients need appropriate information which they can understand and trust and is tailored to their specific needs at each step of the care pathway. Patients are facing difficulties navigating all the information and available options. Physicians need to understand that patients receive information from multiple sites. Many tools are available to help in shared decision-making.

scholarly journals Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective

Rheumatology ◽  
2019 ◽  
Vol 59 (8) ◽  
pp. 2052-2061 ◽  
Author(s):  
Julia Spierings ◽  
Femke C C van Rhijn-Brouwer ◽  
Carolijn J M de Bresser ◽  
Petra T M Mosterman ◽  
Arwen H Pieterse ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Treatment Options ◽  
Treatment Decision ◽  
Structured Interview ◽  
Haematopoietic Stem Cell ◽  
Decision Making Process ◽  
Specific Information ◽  
Shared Decision ◽  
Treatment Decision Making

Abstract Objectives To examine the treatment decision-making process of patients with dcSSc in the context of haematopoietic stem cell transplantation (HSCT). Methods A qualitative semi-structured interview study was done in patients before or after HSCT, or patients who chose another treatment than HSCT. Thematic analysis was used. Shared decision-making (SDM) was assessed with the 9-item Shared Decision Making Questionnaire (SDM-Q-9). Results Twenty-five patients [16 male/nine female, median age 47 (range 27–68) years] were interviewed: five pre-HSCT, 16 post-HSCT and four following other treatment. Whereas the SDM-Q-9 showed the decision-making process was perceived as shared [median score 81/100 (range 49–100)], we learned from the interviews that the decision was predominantly made by the rheumatologist, and patients were often steered towards a treatment option. Strong guidance of the rheumatologist was appreciated because of a lack of accessible, reliable and SSc-specific information, due to the approach of the decision-making process of the rheumatologist, the large consequence of the decision and the trust in their doctor. Expectations of outcomes and risks also differed between patients. Furthermore, more than half of patients felt they had no choice but to go for HSCT, due to rapid deterioration of health and the perception of HSCT as ‘the holy grail’. Conclusion This is the first study that provides insight into the decision-making process in dcSSc. This process is negatively impacted by a lack of disease-specific education about treatment options. Additionally, we recommend exploring patients’ preferences and understanding of the illness to optimally guide decision-making and to provide tailor-made information.

Exploring and supporting older women’s chemotherapy decision-making in early-stage breast cancer.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 181-181
Author(s):  
Meghan Sri Karuturi ◽  
Ashley Housten ◽  
Sharon H. Giordano ◽  
Diana Hoover ◽  
Robert Joseph Volk
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Health Literacy ◽  
Adjuvant Chemotherapy ◽  
Shared Decision Making ◽  
Early Stage ◽  
Decision Making Process ◽  
Shared Decision ◽  
Single Item ◽  
Neo Adjuvant Chemotherapy

181 Background: Few studies have focused on the therapeutic decision-making process in older adults with cancer. This study sought to address this gap by exploring older adult breast cancer patients’ (pts) perspectives on neo/adjuvant chemotherapy, thereby identifying informational needs as they navigate the decision-making process. Methods: Women ≥65 years diagnosed with early stage (I-III) breast cancer were recruited from an academic center following their decision on whether to receive neo/adjuvant chemotherapy. Pts took part in individual semi-structured interviews to explore their perspectives, knowledge, and values. They also completed surveys assessing sociodemographics, health literacy/numeracy, and shared decision-making (SDM-Q-9). Interviews were audio-recorded and transcribed, and analyzed using the Sort and Sift, Think and Shift qualitative approach. Quantitative data was summarized using descriptive statistics. Results: 26 pts completed interviews (age range 65-92; 81% non-Hispanic White; 81% ≥ college degree; 70% single). 14 pts elected to undergo chemotherapy and 11 declined. Most pts had adequate health literacy (mean = 4.31; SD = 1.1 on Single Item Literacy Scale) and numeracy (mean = 4.4; SD = 1.0 on Single Item Numeracy Scale). Pts scored high on the shared decision-making questionnaires (SDM-Q-9, mean = 5.3, SD = 0.7). Thematic analysis uncovered several commonalities regardless of the decision. Pts sought information regarding their disease/treatment, but in some instances were confused regarding the objective of chemotherapy. They often chose treatment outside of the physician’s recommendation, and referenced the subjective experience of friends/family members with cancer. Self-perception of health and the side-effects of chemotherapy were also key factors. Pts also placed importance on the maintenance of quality of life throughout the treatment trajectory. Conclusions: Decision-making strategies in older patients were shaped by knowledge, values and the anectodal experience of others. These discussions will subsequently shape the creation of a decision support tool for older pts and physicians to better facilitate the shared-decision making process.

scholarly journals Who knows best? Negotiations of knowledge in clinical decision making

2015 ◽  
Author(s):  
Charlotte Bredahl Jacobsen ◽  
Helle Max Martin ◽  
Vibe Hjelholt Baker
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Health Professionals ◽  
Patient Involvement ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Shared Decision ◽  
Structured Interviews ◽  
Knowledge Domains ◽  
Clinical Encounters

 This article examines the conflicts which arise when patients with chronic disease engage in decision making with health professionals about their medication. These are conflicts in the sense of discrepancies or incompatibilities between perceptions or opinions of different people engaged in a common endeavour. The paper is based on three qualitative research studies and presents one case from each study to illustrate analytical findings. Data collected in the original studies consisted of observations of clinical encounters and semi-structured interviews; in total 45 interviews with patients and 23 with health professionals. The analysis shows different conflicts, which arise during the process of making decisions about medication. These conflicts arise when: 1) Patients deliberately hold back information about their medication for fear of challenging clinicians’ authority; 2) The decision making process takes place in an environment, which does not support patient involvement; and 3) Patients refer to pharmacological knowledge, but are considered ill-equipped to understand and apply this knowledge by health professionals. The article shows that these conflicts typically revolve around the legitimate access to and use of pharmacological knowledge. These results have important implications for the current discussions of shared decision making. In shared decision making, knowledge about medication is typically regarded as the domain of the doctor. We argue that there is a need for a widening of the concept of partnership, which is central to shared decision making, to encompass breadth of patient knowledge about his/her situation, disease and treatment. Patients with chronic diseases need to be actively invited to disclose the extensive clinical knowledge they acquire over time, thereby creating a legitimate space for this knowledge in clinical consultations, and avoiding that conflicts over knowledge domains lead to unnecessary suffering and wasted resources.

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