From Burden to Empowerment. Patient‐Reported Influencing Factors on Participation in Shared Decision Making in Oncology, a Meta‐Study

ABSTRACT

Objective

We aim to provide a literature overview on patient‐reported barriers and facilitators to participation in Shared Decision Making (SDM) within the setting of oncology.

Methodology

Within the set of selected studies for a larger qualitative meta‐summary, using five databases, we selected the studies that had surveyed patients with oncologic illness for further analysis in this paper. Search terms were based on the concepts: ‘decision making’, ‘patient participation’, ‘patient perceptions’ and ‘study design’ aimed at eliciting patients' perspective, including patient surveys, interviews and focus groups.

Results

Out of the 90 studies that had been selected for the larger review, we selected 22 articles concerning oncologic illness for more detailed analysis in this review. In total, we identified 33 different barriers and facilitators. Based on the most frequently reported barriers and facilitators, we defined six broad analytical themes, reflecting patients' most frequently recurring challenges (Themes 1 and 2) and needs (Themes 3–6) in this setting: (1) ‘High burdens’, (2) ‘Low self‐efficacy to participate’, (3) ‘Clear information provision’, (4) ‘Social support’, (5) ‘Physicians’ support’, (6) ‘Education, preparation and assertiveness’.

Conclusion

The high decisional and emotional burdens oncologic patients experience appear to be specific challenges to SDM in oncology, which often undermine patients' self‐efficacy to participate and complicate patients' engagement in SDM. However, when offered the right support, patients may overcome the existing burdens and become more empowered to engage in SDM.

Practice Implications

These insights need to be integrated in SDM strategies so that they may serve the ethical imperative of greater equality and the inclusion of diverse patient groups in different SDM settings.

1. Background

It is now widely accepted that quality in the delivery of healthcare is more than purely good clinical care. High‐quality health care not only depends on dimensions such as clinical effectiveness and safety, but also on patient‐centredness and successful patient engagement [1, 2]. Shared decision making (SDM), being considered the ‘pinnacle of patient‐centred care’ [3], is defined as ‘an approach where clinicians and patients share the best available evidence when faced with the task of making treatment decisions, and where patients are supported in considering treatment options and achieving informed preferences’ [4]. SDM is now seen internationally as a hallmark of good clinical practice [3], an ethical imperative [4, 5, 6] and is included as a fundamental patient right in a growing number of national health‐care standards and legislation, including those in Belgium [7, 8, 9, 10, 11]. SDM is considered to be applicable in most oncologic decisions as these decisions are often characterized by specific decision characteristics, such as ‘preference‐sensitivity’, ‘multiple options with different possible outcomes’, ‘uncertainty’ of outcomes and ‘high weight’ or ‘high impact’ of the decision, for which SDM is deemed appropriate [12, 13]. Also, patient participation in the oncologic decision making process has been recurrently associated with better functional, physiological as well as emotional outcomes of oncologic care [14, 15, 16, 17, 18], further motivating the importance of SDM implementation in this setting [19].

However, SDM is still not widely implemented in clinical (oncologic) care [20], and patient participation remains challenging. In oncology, information is often high volume, complex and delivered by multiple care providers, and patients are often affected by uncertainty and acute emotional and physical distress that may limit cancer information absorption and negatively impact cognition [21, 22]. Also, decisional complexity in oncologic treatment decision making has only grown since the introduction of individualized molecular profiling [23]. Many patients in this setting might thus need (more) support and guidance to engage in SDM and to make a high‐quality decision based on informed clinical knowledge of available treatment options congruent with their preferences, that is also ‘the right choice for their circumstances’ [19].

Gaining insight into the patient perspective on SDM is a valuable strategy for better customization of SDM approaches to the target group's needs and for the overall improvement of SDM implementation. Within our larger review, which explored patients' experienced barriers and facilitators to SDM across diverse patient groups and healthcare settings [24], we uncovered ‘common ground’ in the patient perspective across the diversity of groups and settings. However, throughout our analysis, we also uncovered particularities in specific settings, such as the setting of oncology, that would benefit from further attention and analysis. Therefore, we chose to complement the insights of our larger review with a more in‐depth analysis of a selection of studies concerning oncologic illness, to better identify existing barriers and facilitators to participation in SDM within the particular setting of oncology. We hope this review may further inform future SDM interventions, that can support the patients' ability to better participate in SDM in oncology and that can help oncologic patients make the shift ‘from burden to empowerment’.

2. Methods

2.1. Study Design

This paper was part of a larger qualitative meta‐summary on patient‐reported barriers and facilitators to participation in SDM across diverse patient groups and healthcare settings, including an analysis of 90 articles that had been sampled through a mixed purposeful sampling approach [24] (Appendix‐Methodology). Out of the 90 studies analysed in this larger review, we selected the studies that had specifically surveyed patients with oncologic illness for a more in‐depth analysis in this paper.

For the current study, a ‘meta‐study’ approach was decided as the method which would be used. A meta‐study allows the ‘systematic analysis of a substantive body of qualitative work’, allowing the authors to generate or expand theoretical frameworks based upon consolidation of knowledge [25]. The approach also allows authors ‘to present the work in a useable and coherent way for researchers and practitioners to use it to inform their subsequent work’ [25]. To do this, a meta‐study involves a systematic approach to the collation and evaluation of research [26] and consists of a number of steps including a systematic literature search, data extraction and meta‐data‐analysis (the analysis of findings) [27].

We conducted this meta‐study, adhering to the Preferred Reporting Items for Systematic review and Meta‐Analyses Protocols (PRISMA‐P Checklist, 2015), complemented with items of the ENTREQ statement (items 10, 12, 13, 18, 21). The research protocol was registered in PROSPERO (https://www.crd.york.ac.uk/prospero/#recordDetails) with ID number CRD42022360313.

2.2. Search Strategy and Selection Criteria

For the larger qualitative meta‐summary [24], we conducted a systematic search using five databases that were searched from January 2012 to April 2023: MEDLINE via Pubmed, Cumulative Index of Nursing and Allied Health Literature (CINAHL), EMBASE, Scopus and Web of Science Core Collection. Studies needed to be published in 2012 or later, as the previous, broad review on patient‐reported barriers and facilitators to SDM [28] included articles up to August 2012. We adapted our search strategy based on this previous review [28]. Search terms were based on the concepts of ‘decision making’, ‘patient participation’, ‘patient perceptions’ and ‘study design’ aimed at eliciting patients' perspective, including patient surveys, interviews and focus groups in particular (Appendix‐Methodology). For this paper, we deliberately chose not to add search terms linked to the context of oncology to our original search string, so as not to restrict our search. Yet, as mentioned above, we chose to make a selection of studies with a focus on the oncologic setting, out of the set that had been sampled for the larger qualitative meta‐summary. We chose to make use of the ‘relevance’ criteria as a marker of quality [29] rather than focussing on the more commonly used approach to quality assessment focussing on methodological flaws as a potential marker of exclusion. Yet, a single quality assessment according to the ‘CASP’ criteria [30] was performed on the records that were considered eligible for this paper by the first author, as a baseline measure of quality.

2.3. Eligibility Criteria

We defined the eligibility criteria according to the ‘SPIE’ acronym (Setting, Population, Interest, Evaluation). We included all studies investigating ‘barriers/facilitators to SDM’ as the ‘interest’ of the study, in the context of oncology (‘oncology’ considered as the ‘setting’ of the study). Considering the interest, we chose to use a broad definition of SDM, including the concepts of ‘patient involvement/engagement/participation in the decision‐making process’. ‘Patients’ were considered the ‘population’ of interest. The term ‘patient’ referred to ‘anyone who is a potential user of healthcare’. In this paper, it specifically referred to the ‘oncologic patient’ or the patient affected by oncologic illness. We included studies evaluating ‘patient perceptions (attitudes, perspectives, experiences, expectations)’ of barriers and facilitators through qualitative, quantitative or mixed‐methods designs, such as patient surveys, (semi‐)/(un‐)structured interviews, focus groups or work groups (the ‘evaluation’ of the study). Interventional studies, exploring patients' perspective as part of the evaluation process of a (decision support) intervention, were excluded since we wanted to focus on intervention‐independent barriers and facilitators. Data originating from patient surveys were included provided that the primary focus of the survey was to identify facilitators and barriers and to quantify its relevance using Likert scales or other rating modalities. Studies using mixed qualitative data collection tools (e.g. combining participant observations and patient interviews) were included, but only the data originating from direct enquiry of patients (e.g. patient interview data) were included for analysis. Studies exploring multiple stakeholder perspectives (f.ex. patients', family members' and/or physicians' perspective) were included on the condition that the data originating from patients could be distinguished from other stakeholders' views, as only the data originating from patients were intended to be analysed further in this paper. For further details on eligibility criteria, we refer to the Appendix (Appendix‐Methodology).

2.4. Study Identification and data Extraction

We removed duplicates in Endnote (Version 20), using Bramer's de‐duplication procedure [31]. Then, the de‐duplicated search results were integrated into the review software programme Covidence and screened independently and in duplicate by six reviewers on title and abstract (ML, SR, KT, JJ, VBP, AB) and next by two reviewers on full text (ML, KT). Reasons for exclusion of full‐text papers were recorded and reported in the PRISMA flowchart [32]. Any disagreements were resolved through discussion within the team.

Study characteristics of all eligible articles were collected in descriptive data extraction sheets in Excel. We extracted primary author, year of publication, country of origin, interest, evaluation, (patient) population (sample size, gender and age distributions) and (oncologic) setting. In a second round, we complemented these with a collection of more detailed study characteristics, such as: ‘social characteristics’ of participating patients, ‘type of decision’ discussed (discussion of curative, palliative, monitoring or other options) and ‘prospective’ or ‘retrospective’ study type. Quotes and descriptions originating from the text under the headings ‘results/conclusions’ of the included studies were extracted and thematized into barriers/facilitators in other data extraction sheets.

2.5. Meta‐Data and Theme Analysis

A ‘meta‐data analysis’ took place, involving ‘the examination of findings from the primary studies in order to identify common themes within the literature’ [25]. We analysed and reported the findings in several formats, because of the complexities inherent to the topic. First, we constructed a detailed taxonomy of barriers and facilitators, based on earlier taxonomies on patient‐reported barriers and facilitators to SDM [28, 33, 34, 35, 36, 37]. We primarily used a deductive analysis approach to identify the first set of barriers/facilitators, as we built on insights from earlier reviews [28, 33, 34, 35, 36, 37], including our own review [24]. Yet, we allowed (and even actively sought for) additional dimensions to emerge during analysis. Secondly, we created an overview of all barriers and facilitators, in order of reporting frequency, to identify the factors that were most frequently recurring. Thirdly, we clustered the most frequently recurring barriers/facilitators into broader analytical themes, reflecting patients' most common challenges and needs with regard to participation in SDM in this setting. Lastly, we created an infographic to offer a visual summary of those most frequently recurring challenges and needs and deepened our findings in a narrative report below, supported by illustrative quotes.

3. RESULTS

3.1. Included Studies

We primarily found 9265 unique references and withheld 209 eligible studies after screening. Out of the set of 209 eligible studies, 90 were sampled and analysed in the larger review [24]. Out of this sample (n = 90) 22 articles [38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59] regarding oncology were selected for more detailed analysis in this review (Figure 1).

FIGURE 1.

Flowchart of screening and selection process.

3.2. Study Characteristics

Studies had all been published between 2012 and 2022 and originated mainly from Western countries (Australia (n = 6), Netherlands (n = 3), United Kingdom (n = 3), United States, Canada, Denmark (n = 2), France, Germany (n = 1)). Two studies originated from non‐Western countries (China, Japan (n = 1)). Research designs were mostly exclusively qualitative (n = 20), with single (n = 18) or mixed data collection tools (n = 2). All included studies (n = 22) used interviews (in‐depth, semi‐structured, narrative or not specified), single or combined with (an)other data collection tool(s). Two studies used mixed‐methods approaches, combining questionnaires with one or more qualitative data collection tools (interviews +/−observations). Questionnaire data were included from only one study [39], adhering to our eligibility criteria. Most studies seemed to be of good methodological quality, according to the CASP quality assessment (no studies having more than 2 ‘NO's’ out of 10), but many researchers showed rather low levels of reflexivity (critical reflections on the own role and potential bias because of that role). Sample sizes ranged from 6 to 171 participants. Papers focussed either on one (group of) oncologic illness(es), such as breast (n = 6), pancreatic (n = 4), hematologic (n = 2) or colorectal cancer (n = 1), or on a group of diverse cancers, in different stages (n = 5) or in an ‘advanced’ stage (n = 4). Data on social characteristics of participating patients were lacking in 9/22 papers. Of the 13 remaining papers, 4 papers explicitly described having a study population being predominantly ‘White’ and/or of ‘high educational attainment’. Nine papers included patients with (very) mixed ethnic origins, and/or a relevant part of patients with lower educational attainment (range 25%–42%), or a substantially lower proportion of patients with higher educational attainment compared to the other studies (range 25%–62%). Decision processes mostly considered consideration of exclusively curative options (12/22). In 8 studies, palliative options were considered, mostly (6/8) in combination with consideration of curative options. In 2 studies ‘other’ options were discussed (‘breast reconstruction after mastectomy’, ‘symptom management in acute oncologic setting’). Study types were balanced, including 6/22 having a prospective set‐up, 7/22 having a retrospective set‐up and 9/22 having a combination of pro‐ and retrospective views on lived experiences.

All study characteristics are included in Table 1. Supplementary study characteristics (social characteristics of patients, type of decision and prospective vs. retrospective study type) are added in Table 2. CASP scores are included in Table 8 in the Appendix.

TABLE 1.

Study characteristics of included articles (n = 22).

Reference	Author	Year	Country	Interest	Evaluation	Patient population			Oncologic setting to which patient are assigned
						Sample size	Gender (% female)	Age (mean, range)
[35]	Cohen	2015	Australia	Barriers and facilitators to patients' participating in their symptom management during an episode of admission to an acute oncology ward and the relationships between these perceptions and patients' preference for participation.	Qualitative ‐ interview‐administered questionnaire (including open‐ended questions)	171	33.9%	53.8, 21–85	Diverse cancers (majority hematologic malignancy)
[36]	Durif‐bruckert	2015	France	Shared decision‐making processes, specifically about surgical treatment for early‐stage breast cancer.	Mixed‐methods ‐ questionnaires, longitudinal interviews, observations of consultations	14	100%	(not available)	Early‐stage breast cancer
[47]	Geessink	2017	Netherlands	Key elements of optimal treatment decision‐making	Qualitative—Focus groups and interviews	22	(not available)	73.5 (focus groups), 80.6 (Interviews) (Ranges not available)	Colorectal and pancreatic cancer
[50]	Giunta	2021	Australia	Breast reconstruction (BR) decision‐making experiences.	Qualitative—Telephone semi‐structured interviews	29	100%	54.17 (range not available)	Breast cancer, post‐mastectomy
[51]	Griffioen	2021	Netherlands	How experiences over the entire care path of locally advanced pancreatic cancer accumulate to support their ability to participate in SDM.	Qualitative ‐ interviews	13	(not available)	(not available)	Pancreatic cancer
[52]	Laidsaar‐powell (family involvement…)	2016	Australia	Family involvement in decision‐making.	Qualitative‐ semi‐structured interviews	30	50%	56, 30–80	Diverse cancers (majority breast cancer, lung cancer and genitourinary cancer)
[53]	Laidsaar‐powell (attitudes and experiences…)	2016	Australia	Family attendance at consultations, family roles in consultations and the challenges of family involvement.	Qualitative—Semi‐structured interviews	30	50%	56, 30–80	Diverse cancers (majority breast cancer)
[54]	Leblanc	2018	United States	Decisions related to treatment for advanced cancer, involving multiple members of the triad ‘patient‐oncologists‐caregivers’.	Mixed‐methods—semi‐structured interviews, surveys	17	17.6%	60.6, 33–78	Advanced cancer (gastrointestinal or haematological)
[55]	Lin	2019	China	Patient participation in symptom management in a Chinese acute cancer care setting.	Qualitative ‐ interviews	41	48.8%	45.4 (range not available)	Diverse cancers (majority breast cancer, head and neck cancer)
[56]	Løwe	2021	Denmark	Patients' involvement in treatment decisions and the changing nature of decision‐making processes over time.	Mixed qualitative ‐ Observational methods, interviews	13	0%	60–89 (mean not available)	Advanced prostate cancer
[37]	McCaughan	2022	United Kingdom	Involvement of patients in treatment decision making (TDM), and the identification of factors promoting or impeding this process.	Qualitative—In‐depth interviews	35	45.7%	50–90 (mean not available)	Haematological cancer
[38]	Noteboom	2021	Netherlands	Treatment decision‐making process and the added value of GP involvement herein.	Qualitative‐ semi‐structured interviews	20	70%	69 (range not available)	Diverse cancers (majority breast cancer), treated with curative intent
[39]	O'Brien (Women's perceptions…)	2013	Canada	Involvement of patients in treatment decision making (TDM).	Qualitative—Semi‐structured interviews	19	100%	61, 40–74	Breast cancer
[40]	O'Brien (physician‐related facilitators…)	2013	Canada	Physician‐related verbal and nonverbal facilitators and barriers to patient involvement in treatment decision making (TDM).	Qualitative—Semi‐structured interviews	19	100%	60, 40–70	Breast cancer
[41]	Schildmann	2013	Germany	Preferences in information and treatment decision‐making.	Qualitative—In‐depth interviews	12	50%	40–76 (mean not available)	Pancreatic cancer
[42]				Women's treatment decision‐making as contextualised by the dynamics in their key relationships with family and clinicians, and their wider social environment.
[43]	Shih	2018	Australia	Patient involvement in treatment decisions about radiation therapy; (ii) Patient knowledge and understanding of treatment; and (iii) What patients value in their interactions with the radiation therapy treatment team.	Mixed qualitative—Observations and semi‐structured interviews	10	100%	34–72 (mean not available)	Breast cancer (benign and malignant)
[44]	Smith	2017	Australia	Breast cancer in relation to the treatment decision‐making process over time.	Qualitative‐ semi‐structured interviews	21	33%	64, 44–81	Diverse cancers (majority prostate cancer, breast cancer, gynaecological, head and neck cancer)
[45]	Swainston	2012	United Kingdom	Experiences and hidden needs of older patients with advanced cancer, their families and their physicians in palliative chemotherapy decision‐making.	Qualitative‐ semi‐structured interviews	20	100%	54.3–72.3 (mean not available)	Breast cancer
[46]	Tsuboi	2020	Japan	Decision‐making conversation for life‐sustaining treatment, based on the Danish model of the american Physician orders for life sustaining treatment (POLST) form.	Qualitative—In‐depth interviews	15	66.7%	77, 70–82	Advanced cancer, diverse
[48]	Tuesen	2022	Denmark	The development of trust between patients and clinicians.	Qualitative‐ semi‐structured interviews	6	50%	40–85 (mean not available)	Diverse cancers (not further defined)
[49]	Whitney	2021	United States	Barriers to shared decision making in a condition in which shared decision making might be difficult.	Qualitative—Semi‐structured interviews	19	53%	45–75+ (mean not available)	Multiple myeloma
	Ziebland	2015	United Kingdom		Qualitative—Narrative interviews	32	47%	35–84 (mean not available)	Pancreatic cancer

TABLE 2.

Supplementary study characteristics of included articles (n = 22).

Reference	Author	Year	Country	Interest	Patient	Decision	Study type
					Social characteristics (level of education, ethnicity, country of birth, (health) literacy, etc.)	Type of decision (curative, palliative, monitoring or other options)	Prospective or retrospective
[35]	Cohen	2015	Australia	Barriers and facilitators to patients' participating in their symptom management during an episode of admission to an acute oncology ward and the relationships between these perceptions and patients' preference for participation.	36% lower educated, great mix of ethnic origins: 23 different countries of birth in sample	Other (Symptom management in an acute oncology setting)	Prospective
[36]	Durif‐bruckert	2015	France	Shared decision‐making processes, specifically about surgical treatment for early‐stage breast cancer.	Not described	Curative options (surgical treatment for early‐stage breast cancer (breast‐conserving surgery))	Retrospective
[47]	Geessink	2017	Netherlands	Key elements of optimal treatment decision‐making	Not described	Curative options	(Probably) combination (‘Patients were (…) diagnosed with CRC/PC in the previous 5 years’)
[50]	Giunta	2021	Australia	Breast reconstruction (BR) decision‐making experiences.	62% higher educated (university level education) and 65,5% living in metropolitan area	Other (Breast reconstruction after mastectomy)	Combination (some had had BR, others not (yet)) (‘all participants were between 6 months to 10 years post‐mastectomy’)
[51]	Griffioen	2021	Netherlands	How experiences over the entire care path of locally advanced pancreatic cancer accumulate to support their ability to participate in SDM.	Not described	Curative options	Prospective
[52]	Laidsaar‐powell (family involvement…)	2016	Australia	Family involvement in decision‐making.	30% lower educational attainment	Curative options	Combination (‘both active treatment and post‐treatment perspectives were captured’)
[53]	Laidsaar‐powell (attitudes and experiences…)	2016	Australia	Family attendance at consultations, family roles in consultations and the challenges of family involvement.	30% lower educational attainment (same sample as study above)	Curative options	Combination (‘both active treatment and post‐treatment perspectives were captured’)
[54]	Leblanc	2018	United States	Decisions related to treatment for advanced cancer, involving multiple members of the triad ‘patient‐oncologists‐caregivers’.	Predominantly White (88,2%) and higher educated	Curative and palliative options	Retrospective
[55]	Lin	2019	China	Patient participation in symptom management in a Chinese acute cancer care setting.	Majority highly educated (75.6% educated beyond high school)	Curative options (Elective surgical treatment options)	Retrospective
[56]	Løwe	2021	Denmark	Patients' involvement in treatment decisions and the changing nature of decision‐making processes over time.	Not described	Curative and palliative options	Combination
[37]	McCaughan	2022	United Kingdom	Involvement of patients in treatment decision making (TDM), and the identification of factors promoting or impeding this process.	Not described	Curative and palliative options	Combination
[38]	Noteboom	2021	Netherlands	Treatment decision‐making process and the added value of GP involvement herein.	Majority highly educated (58%)	Curative options	Retrospective
[39]	O'Brien (Women's perceptions…)	2013	Canada	Involvement of patients in treatment decision making (TDM).	25% lower educational attainment (max high school education)	Curative options	Prospective
[40]	O'Brien (physician‐related facilitators…)	2013	Canada	Physician‐related verbal and nonverbal facilitators and barriers to patient involvement in treatment decision making (TDM).	47% highly educated	Curative options	Prospective
[41]	Schildmann	2013	Germany	Preferences in information and treatment decision‐making.	3/12 higher education, 5/12 lower education, 4 no information	Curative and palliative options (continuing or stopping treatment)	Retrospective
[42]	Shih	2018	Australia	Women's treatment decision‐making as contextualised by the dynamics in their key relationships with family and clinicians, and their wider social environment.	Not described	Curative options	Prospective
[43]	Smith	2017	Australia	Patient involvement in treatment decisions about radiation therapy; (ii) Patient knowledge and understanding of treatment; and (iii) What patients value in their interactions with the radiation therapy treatment team.	7/21 (33%) University degree, 17/21 (81%) spoke English as a first language	Curative options (curative radiation therapy)	Prospective
[44]	Swainston	2012	United Kingdom	Breast cancer in relation to the treatment decision‐making process over time.	Not described	Curative options	Combination
[45]	Tsuboi	2020	Japan	Experiences and hidden needs of older patients with advanced cancer, their families and their physicians in palliative chemotherapy decision‐making.	Not described	Palliative options	Retrospective
[46]	Tuesen	2022	Denmark	Decision‐making conversation for life‐sustaining treatment, based on the Danish model of the american Physician orders for life sustaining treatment (POLST) form.	Not described	Palliative options	Retrospective
[48]	Whitney	2021	United States	The development of trust between patients and clinicians.	Majority white ethnicity (78.9%) and well‐educated (68.4%)	Curative and palliative options	Combination
[49]	Ziebland	2015	United Kingdom	Barriers to shared decision making in a condition in which shared decision making might be difficult.	Majority white ethnicity (94%)	Curative and palliative options	Combination

3.3. Themes

3.3.1. Theme Analysis

In total, we identified 33 different influencing factors, acting either as barrier (n = 14), as facilitator (n = 18) or as barrier and facilitator to an equal extent (n = 2). Table 3 offers a detailed taxonomy. Tables 4, 5 to 6 give an overview of all influencing factors, in order of reporting frequency, and the most frequently discussed aspects per factor.

TABLE 3.

Taxonomy of barriers and facilitators (B = barrier, F = facilitator, B/F = mentioned both as barrier and facilitator).

Patient‐related factors	Interactional factors	Physician‐related factors	Environmental and organizational factors
Individual ‐ Feeling informed   Clear information provision about options (F)   Knowledge (F)   (Not) being offered a full choice (B/F)   To educate and prepare yourself as a patient (F)   Provision of written information (F) ‐ Expectations and attitudes   No or few notion of SDM (B)   Seeing the physician as the expert’ (B)   Physicians' explicit invitation or encouragement to participate (F)   Ideas concerning the ‘good patient’ (B) ‐ Emotions   Emotional burden (B) ‐ Self‐awareness   Low self‐efficacy to participate (B)   Confidence in one's own capacity to participate and insight in the importance of participation (F) ‐ Preferences   Wish for restricted information (F)  Physicians' being honest and transparent (F)   Feeling few/no need to participate (B)   Preference to receive physicians' advice or recommendation (F)   Lower motivation to participate (B)   Physicians being positive or creating hope (F)  Decision ‐ Illness   Disease burden (B)   Timing of decision (in life or disease course) (B/F) ‐ Options   (Lacking) offer of choice (B/F)   Decisional burden (B)	Relationship ‐ Patient‐clinician relationship Patient‐physician relationship (F) (Mis)trust in physician (B/F) ‐ Patient‐clinician communication Being respected as a person, being taken into account (F) Empathy/communication (F) Power imbalance (B) Assertiveness (F) ‐ Social support Support of family/friends/peers (F > B) Support of other healthcare professionals (F)	Physicians' time Physicians' time (F) Physicians' skills ‐ Explaining skills Clear information provision about options (F) ‐ Listening skills Empathy/communication (F) ‐ Training Education or training of healthcare providers (F)	Healthcare context ‐ Care pathway Discontinuity of care (B) Time to think (F) ‐ Consultation Physicians' (consultation) time (F)

TABLE 4.

Overview of barriers in order of reporting frequency.

Barriers	Most frequently discussed aspects	Frequency of reporting
		n/22	%
1. Emotional burden	Emotional impact of diagnosis, impaired cognitive capacity to absorb information/reflect on options/make a decision, wish to delegate decision‐making responsibility to physician or to receive (more) time to think at peaks of great emotional upheaval	12	55
2. Low self‐efficacy to participate	Lack of medical expertise, undervaluing of own expertise, low self‐estimated decision‐making capacity, low experience in SDM, low self‐esteem	12	55
3. Seeing the physician as the expert	Considering physicians to have superior expertise, undervaluing own expertise, physicians' choice is always right/the best	12	55
4. Putting (full) trust in physician	Blind trust, because of medical expertise, because physicians are always acting in patients' best interest, because of being emotionally overwhelmed or experiencing decisional time pressure as a patient	11	50
5. Not being offered a (full) choice	Physicians pushing for the clinically superior option, unbalanced information, false choice	11	50
6. Decisional complexity	Complexity due to multitude of options, medically highly specialized decision, uncertainty of outcomes, high stakes of decision	7	32
7. Lower motivation to participate	Preference to delegate decision‐making responsibility to physician, low motivation to contribute	7	32
8. Wish for restricted information	Preference for ‘dosing’ of information, not wanting to be ‘bombarded’ with information, fear of information overload	5	23
9. Ideas concerning the good (pleasing) patient	Not wanting to express doubts or to question the physician, or to ‘burden’ him with (too many) questions, because of fear of a negative influence on the relationships with them and of being perceived as a demanding or difficult patient. Considering limited physicians' time as a reason to be a brave (following and/or pleasing) patient.	2	9
10. Disease burden	Physical disease/impact of treatment such as nausea and fatigue (f.ex. due to chemotherapy): no drive or energy to participate because of feeling sick or miserable	2	9
11. Discontinuity of care	Seeing many different physicians, no/few longevity in follow‐up, hindering the built‐up of a collaborative relationship	2	9
12. No or few notions of shared decision‐making	Having few or no notion of the presence of choice and/or the concept of SDM	2	9
13. Power imbalance	Experiencing a hierarchy between patient and physician or between different care providers in the health system, preventing the posing of questions to those that are experienced as being positioned ‘higher’ in hierarchy	1	5
14. Family involvement considered as challenging	Difficulties to discuss sensitive topics when family is present, disagreement about decision with family, mismatch in information needs and preferences with family, family asking ‘too many’ questions	1	5

TABLE 5.

Overview of facilitators in order of reporting frequency.

Facilitators	Most frequently discussed aspects	Frequency of reporting
		n/22	%
1. Clear information provision about different options	Understandability (issues), sufficiency and transparency, honesty, physician's responsibility, importance of written format and other strategies to facilitate understanding	16	73
2. Support of family, friends and peers	Informational, conversational, emotional and sociocultural support, (online) peer support.	15	68
3. To educate and prepare yourself as a patient	Information seeking behaviour, discussion of information with social environment and preparation of questions before consultation, physicians helping by announcing what will be discussed in the next consultation and guiding patients to reliable information	11	50
4. Being respected as a person, being taken into account	Feeling listened to, feeling taken seriously, authentic connection, genuine, personal interest in patient by physician.	10	45
5. Good physician‐patient relationship	Good rapport with physician, mutual respect, warm connection, longevity of relationship	9	41
6. Physicians' empathy and good communication skills	Warm, humanistic, personal communication, physicians demonstrating empathy, opening opportunity for dialog	9	41
7. Confidence in one's capacity to participate and insight in the importance of participation	Belief of having the right to participate, expressing belief in the value of one's experiential expertise and contribution, emphasizing the importance of making efforts to understand, to ask questions and to make a decision, as a valuable way to take ownership over the decision‐making process	9	41
8. Assertiveness	Exhibit assertiveness to ask questions to get further understanding and the information you personally need, to stand up and to advocate for yourself	7	32
9. Provision of written information	Provision of written information materials, in the form of pamphlets, brochures or online information.	6	27
10. Time to think	Time to absorb the information, to reflect on it, to discuss it with others and to finally make decisions, time/timing in accordance with emotional preparedness	6	27
11. Support of other healthcare providers	Support of nurses or general practitioners, other clinicians, value of multidisciplinary teams	6	27
12. Physicians' time	Time to provide information about options, time for questions, time to address patients' concerns, time for patients to provide their opinion, physicians' time as an exceptional value, time as an important value in the relationship/trust building	5	23
13. Physicians' explicit invitation or encouragement to participate	Expecting the physician to actively encourage patients to participate and express their opinions, to explicitly ask your input, to invite you to participate as an approvement for involvement, not sharing any information if not explicitly asked to do so	3	14
14. Physicians being honest and transparent (while sharing information)	Expecting honesty, not wanting to be withheld information, even if burdensome (risks or other)	3	14
15. Trust in physician	Trust as facilitating patients' participation, because comforting, giving a sense of safety, (more) in times of greater emotional upheaval and perceived vulnerability	3	14
16. Being offered a choice	Being offered a balanced presentation of different options with pros and cons	2	9
17. Physicians being positive/promoting hope	Physician being positive with patient, works reassuring and comforting	1	5
18. Mistrust in physician	Lower trust in physician creates greater tendency to seek opinions and do own research, be more (pro)active yourself	1	5

TABLE 6.

Overview of influencing factors that were discussed as barrier and facilitator to equal extent, in order of reporting frequency.

Influencing factors (facilitator⬄barrier)	Most frequently discussed aspects	Frequency of reporting
		n/22	%
1. Preference to receive physicians' advice or recommendation	Expecting or wanting recommendation from physician, especially at start of treatment or in times of great emotional upheaval. May either facilitate patients' participation, when it further supports or guides the formation of patients' own point of view but he still leaves the decision to himself, or hinder it, when the patient uses the recommendation to hand over decision‐making power to the physician.	8	36
2. Timing of decision (in life or disease course)	Timing of SDM short after diagnosis mostly hinders patients to participate because of (too) high emotional upheaval and unfamiliarity with disease and treatment(s). Along the disease course or growth in disease/healthcare/life experiences, patients more often experience growth in confidence and assertiveness and growing positivity towards SDM, because of lowering of emotions, growing familiarity with disease/healthcare system and growing disease/life experience(s).	7	32

Building on the most frequently reported influencing factors, we defined six overarching analytical themes, reflecting patients' most frequently recurring challenges (Theme 1 and 2) and needs (Theme 3–6) in this setting. Figure 2 represents an infographic of the themes. The narrative report below textually elaborates on these. Table 7 offers illustrative quotes.

FIGURE 2.

Infographic of analytical themes.

TABLE 7.

Illustrative quotes.

Theme 1: High burdens
1.1. High emotional burden	‐ ‘I was so rock bottom, I guess I just went along with it’ (B) [38] ‐ ‘Your brain is working on so many different levels… you tend to accept what's (treatment) is being given.’ (B) [38] ‐ ‘(…) it just becomes too much… I want somebody to hold my hand and go, I'm going to sort that for you.’ (B) [38] ‐ ‘But back then (when I was first diagnosed) I was really scared. I didn't know what to believe. I kind of trusted them (the clinicians) because I didn't have another choice.’ (B) [45] ‐ ‘I didn't have time to think about it… the cancer was so advanced… they decided.’ (B) [38] ‐ ‘(…) it just becomes too much… I want somebody to hold my hand and go, I'm going to sort that for you.’ (B) [38] ‐ ‘I just wanted someone to look after me and make the decisions at that stage, and tell me what to do.’ (B) [39]
1.2. High decisional burden	‐ ‘They [the physicians] ‘put a positive spin’ on having chemotherapy’ (B) [39] ‐ ‘He felt that the chemo was ‘sold' to him by the team’ (B) [39] ‐ ‘They [the physicians] downplayed any side‐effects’ (B) [39] ‐ ‘I would have liked another option. But the doctor told me that we should continue with the same dose…’ (B) [52] ‐ ‘[The consultant said] “I must tell you that even though you don't want to go into chemo… my recommendation is that you do.’(B) [38] ‐ ‘Even if I hadn't wanted radiation therapy, it would have been difficult convincing people that I shouldn't have it.’ (B) [46] ‐ ‘It is complex… they don't know all the answers… because there's different types of it [myeloma]… and everyone reacts differently [to treatment]’ (B) [38] ‐ ‘I wanted their expertise and their guidance… I felt very involved, but I didn't necessarily feel I should be making the ultimate decisions…’ (B) [38]
Theme 2: Low self‐efficacy to participate
2.1. Lack of medical expertise	‐ ‘A few patients felt incapable to make a choice since they did not experience having the required expertise themselves’ (B) [37] ‐ ‘Because I don't know. If I should make a choice, I would start guessing, but I can't judge what's best. I do not have the expertise (…) so I trust on the doctor's profession’. (B) [37] ‐ ‘They were not confident about their knowledge and trusted the professionals' decision’. (B) [42] ‐ ‘We are not professionals, don't have the knowledge to choose the best’ (B) [42] ‐ ‘Patients described their lack of medical insight as a barrier when discussing their preferences (…) ’(B) [50] ‐ ‘I know nothing about any treatment.’ (B) [52] ‐ ‘They've got so much knowledge about this thing that I don't know anything about…’ (B) [38] ‐ ‘I don't even know the names of the stuff they're giving me. I just want them to do what they know is right.’ (B) [47] ‐ ‘You don't know enough to really challenge him on it’ (B) [47] ‐ ‘I don't make decisions about which chemical he's going to use. That's out of my league, I'm sorry.’ (B) [47] ‐ ‘They've done all the training (…) because I think, well, how would I know?’ (B) [38] ‐ ‘We are not professionals, don't have the knowledge to choose the best.’ (B) [42] ‐ ‘(…) as I know nothing, I left him [the physician]… the choice.’ (B) [35]. ‐ ‘You've got to put yourself in their hands. They are the professionals who know what's best for you and that's the route you've got to take.’ (B) [36]
2.2. Low self‐estimated decision‐making capacity	‐ ‘Gathering information is too difficult for an old person like me.’ (B) [42] ‐ ‘It was pretty obvious that I couldn't negotiate the intellectual portfolio that was gonna be required of me.’ (B) [45] ‐ ‘I have to trust the doctor, because I don't think I can make this decision myself.’ (B) [45]
Theme 3: Clear information provision	‐ ‘Most patients equated receiving oral and written information with involvement’. (F) [52] ‐ ‘Well, I have been involved. (…) they actually hand out a pamphlet explaining how it is done.’ (F) [52] ‐ ‘I think it's involved enough to know the information… give me the summary version so that way that I can make a decision' ’(F) [49] ‐ ‘When people tell me something, it doesn't get fully absorbed. If I see it in black and white I seem to absorb better, and illustrations.’ (F) [46] ‐ ‘I didn't understand what is was really.’ (B) [38] ‐ ‘No one really educated me on what myeloma was. I had to self‐educate myself.’ (B) [45]
Theme 4: Social support	‐ ‘I have one daughter who is a nurse and one daughter who is a pharmacist. They understand things better and more thoroughly than me. I wouldn't be able to make decisions without them.’ (F) [60] ‐ ‘They based their knowledge about medical treatment on […] the illness trajectories of relatives and friends’ (F) [50] ‐ ‘Mr. X who has the same story as I, we're talking intensively with each other.’ (F) [41] ‐ ‘[…] the added value of the GP during the decision‐making process [because] the GP is up to date with my situation’ (F) [37]
Theme 5: Physician's support	‐ ‘Giving time for people to actually speak… […] listening is probably at the top of the list.’ (F) [38] ‐ ‘Being listened to […] enabled me to be involved’ (F) [56] ‐ ‘[women thought that] their involvement in treatment decision making was affected by the relationship between the physician and patient.’ (F) [57]
Theme 6: Education, preparation and assertiveness	‐ ‘I've learned to push for what I want now!’ (F) [40] ‐ ‘You have to be so vigilant and forceful; otherwise, they don't hear what you say.’ (F) [56] ‐ ‘Today I am asking until I know what I want to know.’ (F) [41] ‐ ‘I questioned the doctor because I wanted to make sure that I was not being led into a decision based on what they felt I should have done.’ (F) [49] ‐ ‘I've learned if you don't ask, you often don't get told.’ (F) [56] ‐ ‘Patients [do] have the right to say no and do their own research and be a part of the decision‐making.’ (F) [45]

3.3.1.1. Theme 1: High burdens

Patients regularly reported struggling with high emotional and decisional burdens, complicating their participation in SDM. The setting‐inherent emotional burden was one of the most frequently mentioned barriers (12/22; 55%) and thought to be most pronounced in the (post‐)diagnosis period, thus constituting the most complicated moment for patients to engage in SDM. Patients' experienced decisional burden was mainly determined by 1) the experience of ‘not being offered a full choice’ (11/22; 50%) and 2) the perceived ‘decisional complexity’ of oncologic decisions (7/22; 32%).

3.3.1.2. High emotional Burden

Many patients felt as if they were going through an ‘(emotional) shock’ [39, 55], a ‘rollercoaster’ [49] or had felt ‘deeply shocked, upset and anxious’ [48, 57] when first informed about their oncologic diagnosis. They often felt too ‘messed up’ [53] or ‘at rock bottom’ [48] to grasp or absorb what was being said to them or think of questions to ask at those moments [48]. They had ‘limited interest’ in details of treatment‐related information, because of ‘limited abilities to process and remember this information’, ‘diminished capacity for making reasoned decisions’, not feeling ‘ready’ to make decisions or to ‘grasp what they want’ [40, 52, 53, 55, 56, 59]. Also, a ‘perception of urgency’, a (perceived or created) need ‘to make decisions quickly’ in order to receive timely treatment, was a reason for not engaging further [41, 55]. Having to decide about ‘the limiting of treatment’ was considered another emotionally burdensome moment [59]. Patients sometimes felt ‘forced’ by physicians to take personal responsibility in these high stake decisions, but experienced it as a (too) ‘heavy responsibility’ [52] that they felt (emotionally) ‘unable to assume’ [39].

Mostly at times of great emotional upheaval, patients felt more impaired and demotivated to participate in SDM and felt more comfortable with the idea that physicians could ‘take the lead’ [52, 59], and that they could (just) ‘trust the clinicians’ [58], ‘accept what's [treatment] is being given [48]’ and ‘go along with it’ [48], without any need for further active personal contribution. Temporarily delegating decision making responsibility was experienced as soothing and ‘facilitating a smooth progression’ through these burdensome times [55]. Nevertheless, patients nuanced this by saying that the emotional burden is dynamic throughout the disease process, as well as their passive decisional role preference. When patients are given sufficient ‘time to accept’ their new reality of oncologic disease [56] and appropriate ‘deliberation time’ [41], their ‘emotional preparedness’ [41] to participate may grow, as well as their motivation to, as is further clarified in Themes 3 to 6.

3.3.1.3. High Decisional Burden

First, patients sometimes felt pushed or ‘persuaded’ [59] by physicians to choose a specific option rather than being offered a full choice. They felt that physicians pushed for the curative treatment or the treatment with the best clinical outcomes [59], did not (always) present them with the option of ‘not having treatment’ or felt that refusal of treatment ‘might have been questioned’ [54]. This created the impression that ‘no true decision’ existed [45] or that they were presented with a ‘false choice’ [45], making it harder to make autonomous and sincere, personal decisions. Sometimes, the social environment contributed to this tension [54].

Secondly, the ‘uncertainty’ and ‘unpredictability’ of therapeutic outcomes and the multitude of options were described as rendering decision making extra complex in this setting [48]. The offer of (too) many options with unpredictable outcomes or (too) much information [56] was experienced as ‘overwhelming’ [44, 50], provoking feelings of ‘helplessness’ [50] and making patients feel unable to participate [39]. The decisional complexity was experienced as ‘counter‐productive’ for patients' participation [44] and a reason to prefer clinicians' recommendation [48] or ‘a more paternalistic’ approach [45], rather than being helpful for their active participation in SDM.

3.3.2. Theme 2: Low self‐efficacy to participate

As described above, the high burdens in this setting regularly tended to contribute to a ‘low self‐efficacy to participate’ (12/22; 55%). Patients discussed two (other) elements that further amplified this low self‐efficacy: (experiencing) a ‘lack of medical expertise’ and a ‘low self‐estimated decision making capacity’.

3.3.2.1. Lack of Medical Expertise

‘Lacking medical expertise’ was a very commonly mentioned, self‐perceived barrier to engagement in SDM in this setting, often mentioned together with the idea of ‘the physician being the (real/only) expert’. Patients often tended to downsize their own expertise compared to the ‘professional thoroughness’ and ‘scientific knowledge’ [53] of ‘the professionals’ [55]. They often felt they were not confident (enough) about their (medical) knowledge to judge what's best for them and to contribute to the oncologic decision making process [45, 48, 49, 56, 57, 61]. The highly specialised medical setting further contributed to the feeling that the required decisions are ‘out of my [the patient's] league’ [45] and of ‘knowing nothing’ compared to physicians [39]. At the start of treatment, this ‘incapability’ was often reported to be greatest, as patients are (totally) new to understanding their diagnosed disease [53]. Patients regularly cited they thought it would (thus) be better to ‘leave the decision to the physicians’ [39, 62] and to ‘put themselves in their hands’ [62], since they are ‘the [real] experts’ ‘who know what's best for you’ [49, 55].

3.3.2.2. Low Self‐Estimated Decision‐Making Capacity

Assumed personal shortcomings in information comprehension, information gathering and/or decision making skills contributed to patients' low self‐esteem in SDM. Several patients attributed these shortcomings to personal traits such as their age or intellect [54, 56, 58], and felt involvement in SDM was (thus) ‘beyond their capability’ [46]. Others attributed their shortcomings to their limited decision making experience [47, 48, 56] as they felt they had ‘no experience in that way’ [47], or felt that they did not have ‘the time or capacity to question the clinician's judgement’ [58]. Some believed it was ‘perfectly okay that they [the physicians] decided’ and that it is acceptable and normal that patients ‘just provide their bodies’ [62], because of their ‘inferior’ expertise and capacities.

3.3.3. Theme 3: Clear information Provision

Despite the challenges of high burdens and lower self‐efficacy, many patients saw opportunities and suggested several support strategies to overcome the challenges and become more empowered to engage in SDM, of which ‘clear information provision about options’ (16/22; 73%) was discussed the most.

Many patients discussed the importance of clear information provision through examples of earlier, negative experiences in the area of information provision. They reported having felt ‘poorly informed’ [41], because of the use of ‘jargon’, ‘big words’ and language that was ‘too difficult’, ‘too scientific, dense and formal’ to understand well [38, 39, 42, 48], not ‘meet[ing] their [patients’] needs‘ according to ‘information format’ and ‘language’ used [42]. They had also felt ‘kept in the dark’, had only received information ‘after the fact’, or to ‘repeatedly ask for information’ rather than it being volunteered by clinicians [38], hindering their full involvement.

Patients explicitly stressed their ‘desire’ to know the different options and to know about their illness ‘clearly’ [46, 56]. Information retrieval was sometimes even equated with involvement in the decision making process itself [50, 61]. Patients emphasized that they did not want information to be withheld [40, 54, 62], but that they wanted their physician to be ‘open’, ‘honest’ and ‘transparent’ [58], willing to answer patients' questions and to be ‘forthright’ about options [38], even if this meant bad news [38]. However, patients underlined that the timing and amount of information sharing should always be ‘tailored’ to match individual requirements [42, 48]. They stressed that they did not want to be ‘bombarded’ with information [38] but wanted be given sufficient time to ‘process’ and ‘digest’ the, often complex, information [38], all the more so because of the (emotionally) burdensome context.

Many patients considered their physicians responsible for the provision of clear and sufficient information and considered the absence of it as ‘a lack of caring’ [54]. Patients made clear that they expect their physicians to ‘share their knowledge’ [46], to ‘guide [patients] to reliable information’ [54] and to help patients understand, by ‘making the effort to make complex information understandable’ to them [58]. Several strategies to facilitate this understanding were suggested, such as physicians' use of ‘layman's terms’ [58], of ‘minimal jargon’ [54], of visual aids, pictures, illustrations, diagrams [42, 51, 54] and of written information [39, 54]. Also, explicit information provision about the practical implications of options; an answer to the question ‘How will it affect [my] daily life?’ [40], was expressed as a relevant information need.

3.3.4. Theme 4: Social support

Having ‘social support’ throughout the SDM process, referring to the ‘support of family, friends and peers’ (15/22; 68%) as well as to the ‘support of other healthcare providers’ (6/22; 27%), was considered additionally helpful to facilitate patient participation because of the ‘informational, conversational, emotional and decisional support’ this network of (in)formal caregivers might offer.

Having a family member attending the consultation could help the patient to comprehend the information [40, 41, 42, 43, 48, 54] and to remember (better) what was said during the consultation, because of the ‘second pair of ears’ [38] that was (considered to be) ‘less affected by emotions’ compared to the patient's ears [40]. Family might ‘go over’ the information and check the patient's (correctness of) interpretation, after the consultation [38, 40, 48]. Also, for the physician, family might provide informational assistance by providing social or medical information about the patient [43].

Family could offer very relevant emotional support as well. Patients often felt ‘comforted’, ‘calmed’ and ‘stronger’ because of their family's presence [43], due to the ‘empathetic relationship’ they share with them [56]. Family's ‘being there’ gave patients a ‘sense of security’, which could help to enhance patient involvement and autonomy in decision making [43]. One patient suggested that the family's involvement should be considered an ethical obligation, as ‘cancer diagnosis and treatment also affect them [emotionally]’ [43].

Family and others could also offer decisional support [43], by acting as a ‘sounding board’ [48]. Family members with a medical background as a health professional or with personal illness experiences, were particularly valued for their medical or experiential expertise [46, 52, 57]. Also, other people who had had a ‘similar illness experience’ [46] outside the family circle, were greatly appreciated for this latter expertise. Emotional and decisional support from these ‘peers’ [46, 52] was actively sought through national and local support groups, online blogs, online patient forums and social media [41, 48]. Also, other healthcare providers, such as nurse specialists or general practitioners, were suggested as valuable decisional partners [48, 49].

In summary, for many reasons, time and opportunities to discuss the proposed treatment with family and (in)formal others throughout the SDM process were, overall, greatly appreciated [43, 48, 59]. Some suggested that ‘preferences for family [or others’] involvement’ should therefore be ‘routinely clarified’ in the SDM process [43].

3.3.5. Theme 5: Physicians’ Support

Besides social support, patients also recurrently described the importance of relational support and recognition from their treating physician, through ‘respect’ (10/22; 45%), ‘empathy’ (9/22; 41%) and a ‘good physician‐patient relationship’ (9/22; 41%).

Feeling ‘listened to’ [38], ‘being heard’ [49], feeling ‘taken into account’([40, 42]), feeling that you ‘matter’ and that ‘your [the patient's] decision counts’ [57] were described as crucial elements in becoming involved. Physicians' ability to ‘demonstrate empathy’ [40, 41, 48, 56, 58] and to ‘facilitate a communicative space’ by ‘giving time to ask questions, listen and talk’, were mentioned as highly relevant to help ‘open an opportunity for dialog' [53], to make conversations feel ‘more personal’ [57], to make patients feel more ‘comforted’, ‘at ease’ [48, 56] and enable them to become involved.

Patients experienced a need to feel ‘respected’ [38] and to feel treated as a ‘person’ throughout the process, instead of a ‘medical case' [42] or a ‘number’, by the act of physicians ‘taking an interest in patients personally’ and ‘acknowledging their contribution’ [54]. Personal attention was perceived to constitute the basis for the development of a personal connection and the ‘optimization of the patient‐physician relationship’, which was considered to be ‘essential’ for physicians ‘to model a good decision making process' [40] and which directly affected patients’ involvement [51].

Patient satisfaction with the (oncologic) care received and patients' trust in physicians seemed to be largely determined by the communicative quality of the physician‐patient interaction, sometimes more than by physicians' medical competence. Physicians that were perceived as ‘competent, but not caring’ were experienced as physicians that ‘did not really mean to help patients […] although they know their stuff’ [58], hindering a trustful, collaborative partnership and a successful engagement of patients. ‘The chance to establish trust and rapport’ was described by some as what they ‘value most’ in clinical consultations [38, 53], and the experience of ‘having their opinions been heard’ was experienced as being ‘more important than’ (or at least as important as) ‘making the final decision’ [46].

3.3.6. Theme 6: Education, Preparation and Assertiveness

Lastly, patients suggested some patient behaviours and conditions that could further facilitate their participation, such as (the creation of) opportunities to ‘educate and prepare yourself’ as a patient (11/22; 50%) and to ‘be assertive’ during the consultation (7/22; 32%).

3.3.6.1. Education and Preparation

Active information seeking and reading about the disease and treatments, prior to the consultation, could help patients ‘equip themselves’ [48], ‘gain control over their experience’ [55], discuss options with others [43], and take an active role in treatment decisions [50, 55]. Patients who felt unprepared for the consultation perceived the consultation more frequently as upsetting, negatively impacting their ability to engage [51]. Several patients searched, or had tried to search, for additional information [42] and considered information‐gathering to be a ‘key component of being involved in treatment decision making’ [50].

However, patients consistently acknowledged that autonomous information‐seeking is not straightforward. They regularly experienced difficulties understanding ‘most of the information they encountered’ [48]. Patients reported that information seeking requires many different skills and resources from them, such as ‘the ability to distinguish between ‘authoritative’ and ‘dreadful’ information sources', skills in retrieving and interpreting information, prior knowledge, a ‘high level of personal commitment’ and resources such as internet access and time [48], which are not always (fully) present and/or accessible to all patients. Explanations by physicians about what will be discussed in the next consultation [51] and ‘guiding’ patients to reliable information sources [54] were suggested as valuable strategies to help overcome some of these problems.

3.3.6.2. Assertiveness

Finally, ‘assertiveness’, in the form of ‘critical question‐asking’ or ‘standing up for oneself’, was explicitly suggested as a helpful patient behavioural trait for participation in the SDM process. Most patient testimonials on this topic, although not numerous, seemed to be characterized by great emotions and a conviction of its importance.

Proactively asking questions was considered helpful for getting further clarification on options during the consultation and to become more confident about the best option [48]. Patients seemed motivated to adopt this behaviour by an eagerness to learn and understand [52, 56, 58], as well as by a scepticism about the information provided by physicians [50] or by prior exposure to (perceived) incompleteness of physicians' spontaneous information provision [38]. The acts of ‘speaking up’ [48] and being ‘your own advocate’ [38] were mostly motivated by referring to patients' right to autonomy (‘the right to say no’) [58]. Sometimes, prior negative experiences seemed to have fuelled patients' conviction of its importance: ‘You have to be so vigilant and forceful; otherwise, they [the physicians] don't hear what you say.’[39]

4. Discussion

4.1. Summary of Findings

‘High burdens’ and a ‘low self‐efficacy to participate’ stood out as the most frequently discussed challenges to patient participation in SDM in oncology, within this review. Overwhelming emotions, a highly specialized medical setting with great perceived decisional complexity, a conviction that ‘the physician is the (only) expert’ and that patients have ‘inferior’ expertise and capacities, all seem to contribute to low self‐efficacy of the patient in this setting. However, if oncologic patients feel that clear information about different options is provided, if they feel ‘supported’ by their family, their physician and (in)formal others, and, if they are offered sufficient opportunities to ‘educate and prepare’ themselves and to ‘be assertive’ during the consultation, they see valuable chances to move ‘from burden to empowerment’ and to become increasingly engaged in SDM.

4.2. Comparison With Other Findings

The huge impact of oncologic illness on patients' emotional burden [22, 47, 63] is known to cause great uncertainty and vulnerability in patients, which often makes them feel ‘in dire need’ [22, 64], and they prefer to seek reassurance in ‘leaders’ that can ‘hold their hand’ and guide them through the difficult times [48]. As confirmed in the records included in this review, patients often tend to ‘trust what the doctor decides to do’ and prefer to play a more passive decisional role when exposed to a high emotional burden and associated uncertainty [64], complicating their engagement in SDM. Patients' preferred role in decision making also depends on the severity of the condition and their knowledge about it [65, 66, 67, 68], which was confirmed in this review as well. Compared to other health care settings, the setting of oncology seems to be characterized by some important challenges, that have very particular influences on SDM dynamics in this setting and that are less apparent in other settings [24]. However, it is important to realize that oncologic patients' feelings regarding participation in SDM are often more ambivalent than our findings suggest at first sight, and are characterized by a ‘tension between relying on physicians’ recommendation and having more involvement in treatment care plans' [47, 69].

Looking deeper into the reported barriers and facilitators, we seemed to uncover more (underlying) challenges than those explicitly mentioned by the patients of the included records. The presence of misinterpretations of what SDM entails and what is expected from patients and physicians in the process [70], for example, was an important finding, that helped us to better interpret patients' reporting. Patients may not be in a position to report their ‘preferred role in decision making’, if they do not understand what their options are, what the pros and cons of those options are, or ‘why the best choice may depend on what matters most to them’ [20]. Throughout the reporting, we recognized a prevailing ‘biological focus’, an under‐recognition of patients' complementary expertise and struggles of physicians regarding ‘(sharing) responsibilities’ and giving up decisional power in the SDM process, all of which have an important impact on patients' reported self‐efficacy, experienced burdens and ‘preferred role in decision making’.

Earlier literature on SDM models and patient perspectives has highlighted the issue of a remaining focus on the ‘biological approach’ and on (medical) ‘information provision’ in the SDM process [28, 71, 72], leading to medical encounters that are often focussed entirely on discussion of biomedical issues [71]. The very high reporting frequency of the factor ‘clear information provision’ in this setting, as well as in other settings [24], suggests that patients (continue to) put a lot of emphasis on the (biomedical) information provided in the process, which is likely to be a consequence of this focus. Moreover, literature has shown that patients and physicians often have the (unrealistic) expectation in SDM that patients need to contribute in this (exclusively) biomedical consideration process and choose the (medically) best treatment option all by themselves [72]. This expectation perpetuates high participation problems [73, 74, 75, 76], as patients are not equipped with the same amount of medical knowledge as physicians are, and feel burdened with great responsibilities. Patients in our records confirmed feeling that they ‘lack the necessary (read: medical) expertise’ to meaningfully contribute, that the required decisions are (perceived to be) ‘out of their league’ and that participation in SDM is ‘too burdensome’ or ‘too difficult’ for them.

Also, patients' and physicians' acknowledgement, and clarification, of the complementary expertise that patients can bring to the SDM encounter, and the physicians' skills (and motivation) to elicit the patient's perspective and integrate it into the care plan, remain largely unaddressed [28, 71, 72], leading to continued preference misdiagnoses by physicians [77]. It also risks leading to an undervaluing, or even devalorization, by patients of the complementary expertise that they can bring to the SDM encounter, as found in our records of patients who stated having ‘inferior’ expertise and capacities compared to physicians, and as described in earlier literature [28].

Lastly, SDM is aimed at ‘sharing responsibilities’, ‘shared risk taking’ [64, 78] and, from the physicians' side, being ready to ‘give up decisional power’ [79]. ‘SDM is not about who takes the decision, but the process of arriving at this decision’ [80]. Earlier literature, however, has shown that physicians are theoretically open to SDM, but that making decisions and taking responsibility for the decisions remain an important part of the physicians' professional identity and that the ‘fear to lose’ this identity tends to hinder true patient involvement and implementation of SDM [81]. This was affirmed by oncologists in other studies [76, 82]. Despite earlier findings showing that ‘active patients’ would be more able to facilitate SDM [83], studies have confirmed that physicians often tend to dislike (pro)active patient behaviours, such as being assertive, searching the internet or informing themselves about other patients' experiences, and that they are less open to SDM ‘if a patient resists a physician's recommendation that the doctor believes to be reasonable and in the patient's best interest’ [79]. Patients in our records confirmed that they did not always feel as if they were allowed (by physicians) to be active and to truly contribute in the SDM process, to refuse the recommended treatment or to pursue a treatment not considered clinically ‘optimal’ by physicians, or felt they had been presented with a ‘false choice’. This possibly created confusion according to the SDM concept and expected (or appreciated) role distributions and probably amplified patients' uncertainty and low self‐esteem according to their (active) role in this setting.

Apart from these challenges, patients saw many opportunities to become engaged as well. Besides clear information provision, they broadly confirmed their needs and longings for the ‘relational elements’ in SDM, through social support as well as through the connection with their physician and other healthcare professionals, to become empowered in the process, which was strongly supported by earlier literature [63, 72, 76, 84, 85, 86, 87, 88]. Oueslati et al. previously identified the ‘good physician‐patient relationship’ as part of the value ‘Security’, being particularly relevant in SDM processes with more ‘vulnerable’ patients [72]. Taking into account the existing uncertainty, vulnerability and lack of power patients currently experience in oncology [89], and the increasing data confirming patients' need for supportive healthcare providers and trusting relationships to foster their autonomy in SDM([90, 91]), the systematic integration of this relational aspect in SDM in oncology, including physicians' investment in the build‐up of a trusting relationship, seems underrecognized but warranted, amongst other factors, to further support patients' participation in this setting [89].

Also, the element of ‘time’, to ‘educate and prepare yourself’ as a patient, cognitively as well as emotionally, and to become more confident and assertive, must be taken into account. As the emotional burden is often experienced to be dynamic throughout the disease process, and as there is a growing recognition that oncologic treatment decisions can often be safely delayed [47], physicians and other health professionals may support patients by be(com)ing (more) open to offer a window of time to help patients develop the ‘emotional readiness’ to prepare for SDM and to engage their, often‐needed, social environment in this burdensome context.

Finally, physicians should find ways to deal with changing patient‐physician dynamics and (pro)active patient behaviours, such as assertiveness, without getting annoyed [79]. It is known that patients' assertive behaviour remains highly fragile and dependent on many other factors. Clinical situations of experienced time constraints [92] and a lower perceived sense of acceptability of question‐asking can easily make patients feel compelled to conform to socially sanctioned roles [93], undoing positive trends of assertive behaviour [54, 56, 92, 94, 95] and, thus, SDM promoting patient traits.

4.3. Strengths and Limitations

To our knowledge, this is the first review that specifically compares patient‐reported barriers and facilitators to participation in SDM in oncologic patients, without restriction to a particular sociodemographic group [60]. The broad mix of oncologic diagnoses, (oncologic) decision types (curative/palliative/mixed) and study types (prospective/retrospective/mixed) in our sample as well as the lack of restrictions on sociodemographic ground, supports the generalizability of our findings. The great consistency of our results across numerous studies as well as the important similarities with findings in the most recent literature on SDM in oncology, suggest that we have correctly identified the key factors influencing patients' participation in this setting. We are convinced that our focus on patient‐reported data is a strength. It helped us to improve our insights into the current implementation issues of SDM from the perspective of the target group, including the ‘blind spots’, factors that other stakeholders are not aware of because of lack of disease experience.

We do realize, however, that focussing on the perspective of one stakeholder group includes the risk of missing out broader factors. The majority of barriers and facilitators patients mentioned were related to the ‘microlevel’, referring to the level of factors that are connected to the patient and the physician, and the involvement of the patient's relatives [96]. Although this finding is in line with recent data on explanations for differences in the degree of SDM, as experienced by patients [96], it does not capture the full range of earlier‐identified barriers and facilitators to SDM, such as physician‐ and context‐related factors, as well as factors linked to the meso‐ or macrolevel [97]. Direct enquiry analyses also risk missing unconsciously present factors in the interrogated group, such as problems of misconceptions or misinterpretations. Patients' reporting on SDM is subjective and coloured by prior (life or healthcare) decisional experiences, patient‐physician dynamics, cultural norms as well as by knowledge of and familiarity with the concept of SDM, which may be lacking, be incorrect or incomplete. Our sample contained an overrepresentation of papers originating from Western countries (20 out of 22). Although this distribution is in line with the global distribution pattern of research on SDM, it should be kept in mind while interpreting the results, as differences in patient perceptions of SDM across other regions and cultures are present [98] and may not be represented in our results. Also, the social representativeness of the samples in the included records may be questioned, as only 9 out of 22 studies explicitly described more representative social mixes within the study population. Biases according to the representation of differing social groups and a possible underrepresentation of less privileged patient voices, such as of patients with lower health literacy or otherwise disadvantaged patient groups, may be present in the data.

Concerning the labelling of the methodology, we realize that the current review is labelled differently compared to the larger review we published [24], although the current review contains a set of studies that were evenly analysed in the larger review. We are aware that the different labelling might induce methodological confusion, so we want to clarify our considerations. The larger review on patient‐reported barriers and facilitators to participation in SDM across diverse patient groups and healthcare settings (n = 90) [24] had been deliberately labelled a ‘qualitative meta‐summary’, referring to ‘a quantitatively oriented aggregation of qualitative findings (…) to accommodate the distinctive features of qualitative surveys’ [99]. This label was considered appropriate for this review as the sample of analysed studies contained a relevant set of studies that had used qualitative surveys (11/90; 12%) and as we chose to aggregate the (large set of) qualitative findings in a predominantly quantitative way. As the current review contained a relatively smaller proportion of studies using qualitative surveys (n = 2/22; 9%) compared to the larger review, and findings were chosen to be less (predominantly) aggregated in a quantitatively oriented way, together with other reasons we have specified in the methodology section, we considered the label ‘meta‐study’ more appropriate for this work. Extensive discussions within the research group, including an expert in qualitative (synthesis) research, preceded our decisions concerning the methodology labelling of our different works.

For this meta‐study, we only performed a baseline measure of the quality of the included articles based on a single CASP criteria assessment (by ML), which could be considered a methodologic limitation of this review. Yet, we did not intend to select papers based on the assessment scores as we chose to rather use the ‘relevance’ criteria as a marker of quality [29]. According to the CASP assessment, however, most studies seemed to be of good methodological quality, but many researchers showed rather low levels of reflexivity. As several researchers identified as clinicians and as earlier studies have shown the existence of (SDM) misconceptions at physicians' side (as well) [70], potential bias according to the data collection and interpretation process may have happened in the included records, although it was not explicitly described. This could be considered an additional limitation within the included records.

Lastly, we realize that the quantification of qualitative data requires contextualization, since the presence, absence or frequency of reporting does not necessarily say something about the (ir)relevance of the reported factor. We tried to offer this contextualization as much as possible. We do believe, however, that the quantification technique helped us to identify patterns in the gathered data.

5. Conclusion

‘High burdens’ and a ‘low self‐efficacy to participate’ stood out as the most frequently discussed challenges to patients' participation in SDM, within this review. These challenges seem to be largely oncology‐specific and seem to have very particular influences on SDM dynamics in this setting, that are less apparent in other health care settings. Looking deeper into the reported barriers and facilitators, however, we seemed to uncover more (underlying) challenges to be present, that contextualized and nuanced the barriers and facilitators that patients explicitly mentioned in their reports. Misinterpretations of what SDM entails and what is expected from patients and physicians in the process, was an important example. We recognized a prevailing ‘biological focus’, an under‐recognition of patients' complementary expertise and struggles regarding ‘(sharing) responsibilities’ in the SDM process, all of which have an important impact on patients' reported self‐efficacy, experienced burdens and preferred role in decision making.

We hope this work may help to contribute to the development of valuable SDM strategies in oncology and may serve one of the main priorities in contemporary SDM research, that being the ethical imperative to achieve a greater equality and inclusion of diverse patient groups in different SDM settings.

Author Contributions

Mertens L.: conceptualization, formal analysis, investigation, methodology, writing—original draft. Wildiers H., Van Veenendaal H., Oueslati R.: writing—review and editing. Kasmi T. screening. Hannes K.: conceptualization, methodology, validation. Vermandere M., Bekkering G., Delvaux N., Jaeken J., Van Bostraeten P.: screening, writing—final review and editing. Aertgeerts B.: conceptualization, supervision, writing—review and editing.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Supporting Information S1

Table S8

L, Mertens , H Wildiers, Van H Veenendaal, et al. 2025. “From Burden to Empowerment. Patient‐Reported Influencing Factors on Participation in Shared Decision Making in Oncology, a Meta‐Study.” Psycho‐Oncology: e70218. 10.1002/pon.70218.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author, ML, upon reasonable request.