Barriers of and strategies for shared decision‐making implementation in the care of metastatic breast cancer: A qualitative study among patients and healthcare professionals in an Asian country

Abstract Background Shared decision‐making has been shown to improve the quality of life in metastatic breast cancer patients in high‐literacy and high‐resource settings. However, limited studies have examined the cultural preferences of metastatic breast cancer patients with shared decision‐making implementation and the barriers encountered in an Asian setting where societal norms predominate and physician decision‐making is at the forefront. This paper aims to identify (1) barriers to practising shared decision‐making faced by healthcare professionals and patients and (2) strategies for implementing shared decision‐making in the context of metastatic breast cancer management in Malaysia. Methods We conducted a qualitative study involving 12 patients diagnosed with metastatic breast cancer, 16 healthcare professionals and 5 policymakers from surgical and oncology departments at public healthcare centres in Malaysia. Semi‐structured in‐depth interviews and focus group discussions were conducted. The interviews were recorded, transcribed verbatim and analysed using the thematic approach. Nvivo software was used to manage and analyse the data. Results Five main themes emerged from the study: healthcare provider–patient communication, workforce availability, cultural and belief systems, goals of care and paternalism versus autonomy. Other strategies proposed to overcome barriers to implementing shared decision‐making were training of healthcare professionals and empowering nurses to manage patients' psychosocial issues. Conclusion This study found that practising shared decision‐making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision‐making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider–patient barriers identified in this study. Patient or Public Contribution Patients were involved in the study design, recruitment and analysis.


| INTRODUCTION
Shared decision-making has improved quality of life and health outcomes in metastatic breast cancer patients in high-literacy and high-resource settings. [1][2][3][4][5] Shared decision-making allows patients and their clinicians to collaborate and come to a decision that incorporates patients' values and known evidence in the healthcare setting. 6 Breast cancer patients in low-resource settings often have delayed diagnosis with a late presentation; therefore, survival is significantly lower. [7][8][9][10] This may be due to the low literacy level of the patients in these settings, causing limited participation in the healthcare process. 11,12 Furthermore, because of the complexity of metastatic breast cancer and the heterogeneity in its treatment, patients may have limitations in comprehending the information. 13 Shared decision-making is therefore useful in providing optimal care to these patients. 13 However, in an Asian setting where societal norms predominate, patients seemed to prefer physician-and family-based decisionmaking over shared or active decision-making. 14,15 In a study of breast cancer patients in Malaysia, nearly half of the patients (42.6%) preferred passive decision-making. 16 This was compounded by the misperception of the physicians that more than half of these patients played an active role in decision-making, highlighting a significant discordance between patients and physicians. 16 The adoption of family-centred decision-making is the norm in Asia as patients perceive that family dynamics supersede their self-care, but the negative consequences of this mode of decision-making are often not explored. [17][18][19] To date, limited studies have examined the cultural preferences of metastatic breast cancer patients with shared decision-making implementation and the barriers encountered surrounding this. 12 Therefore, it is unclear whether shared decisionmaking has a similar impact on the quality of life in Asian patients.
This paper aims to explore (1) barriers to practising shared decision-making faced by healthcare professionals and patients and (2) strategies for implementing shared decision-making in the context of metastatic breast cancer management in a low-resource Asian setting.

| Design
This was a qualitative study using focus group discussions (FGDs) and in-depth interviews (IDIs) for patients, healthcare professionals and policymakers. The qualitative approach allows us to explore their perspectives on the barriers to the implementation of shared decision-making in metastatic breast cancer treatment and strategies to improve its implementation. The women were interviewed one to one to create a safe space for them to voice their opinions.
Healthcare professionals' accounts were garnered via FGDs to prompt discussions about the challenges they face in their healthcare experiences and IDIs for those who were unable to attend the FGDs.
Policymakers' narratives were collected through IDIs.

| Healthcare context
Malaysia operates a two-tiered healthcare system (public and private). The public healthcare sector is heavily funded by govern-

| Research team and reflexivity
The research team was led by a family medicine specialist (L. P. Y.) with a special interest in shared decision-making research and with prior experience in leading qualitative research. 21 The study design was developed by the principal investigator with four family medicine specialists who have experience in shared decision-making and   22 FGDs were arranged to include healthcare professionals from similar practice backgrounds and locations.
The interviews were conducted sequentially with initial interviews with healthcare professionals, followed by interviews with policymakers and finally interviews with patients. This allowed the researchers to analyse and capture the main challenges and issues experienced by healthcare professionals and guide the subsequent interviews of the policymakers and patients.
Written informed consent was obtained for all participants.
Participants received a small financial acknowledgement (RM100 [USD24] to RM150 [USD36]) on completion of interviews to help offset travel and other costs incurred.
The sample size of this qualitative study was determined by data saturation. 23 Recruitment was stopped after 25 IDIs (12 patients, 8 healthcare professionals and 5 policymakers) and 3 healthcare professional FGDs, when researchers agreed that the analysis had reached thematic saturation.

| Data collection
We developed a semi-structured interview guide by adapting the topic guide utilized in a previous qualitative study by Adina  The interviews were audio-recorded and transcribed verbatim. An independent transcriber checked the transcripts for accuracy. The checked transcript was then used for data analysis. The interviews and data analysis were conducted concurrently.

| Data analysis and validation
We used NVivo 12 software to manage the qualitative data. The transcripts were analysed inductively using the thematic approach, which included the following steps: familiarization; identifying LEE ET AL. themes; indexing; charting; and mapping. 27 Two researchers (S. S. G. and A. A. R.) analysed the patients' data, whereas two other researchers (L. P. Y. and C. A. T.) analysed the healthcare professionals' and policymakers' data separately. All the analyses were performed independently. A list of free nodes (codes) was created and subsequently, all the potentially relevant codes were extracted into themes. The themes were then merged to form categories and a coding framework. Any disagreements that arose were discussed during research meetings and were resolved via a final consensus on common emerging themes obtained among all researchers. Participants were asked to provide feedback on the findings, and there was no disagreement with the analysis.

| Barriers and strategies for shared decisionmaking implementation
Five themes emerged on the barriers and strategies identified for shared decision-making: workforce availability; healthcare provider-patient communication; cultural and belief systems; goals of care; and paternalism versus autonomy. Tables A3-A5 summarize the individual barriers, similar barriers and suggested strategies among the participants.

| Barriers
All participants agreed that time constraint (due to limited workforce) is a significant challenge in allowing for a proper explanation, counselling and decision-making. Patients felt that they could not ask the doctors questions due to the perception that the doctors were busy and had time constraints. In terms of treatment decisionmaking, the majority of the healthcare professionals provided patients with 1-2 weeks to make decisions, but patients sometimes took longer to decide, as their concerns were not being addressed due to time constraints. One healthcare professional thought it was reasonable to provide patients with more time to gather information and make important decisions but was peer-pressured by colleagues and the short time allocated by the system. In addition, the lack of continuity of care (patients see different doctors at each consultation in public hospitals) had contributed to a lack of individualized discussion of patients' concerns. Healthcare professionals and policymakers felt that these system barriers were due to the lack of resources, human power and expertize (31 oncologists across 6 oncology centres throughout the country) and the lack of a robust patient support system, resulting in certain healthcare professionals like nurses taking on multiple roles (e.g., social worker, counsellor).

| Strategies
Involving other parties, such as patient support groups and NGOs, to provide support and counselling for patients and the availability of social welfare support for financial assistance may pave the way to set-up of a robust system to support patients in the future. The lack of continuity of care has been suggested to be resolved by assigning a patient navigator to each patient. Healthcare professionals can involve patient navigators in patients' treatment decision-making to provide support and allow patients to clear their doubts outside of consultations, as a solution to the time constraint issues. Policymakers noted that access to expensive innovative therapies remains a challenge in low-resource settings and this added to the decisional conflict for patients. In this context, they highlighted the need for a centralized policy on value-based medicine so that the healthcare system could put in place funding for innovative medicines that can prolong or improve the quality of life.
…We must also look at value-based medicine. Although the treatment may be efficacious, … but at the same time we need to look at the whole population….

| Strategies
The use of booklets was suggested to tackle the complexity of oncological information, which will in turn address patients' concerns and provide adequate information. Patients also conveyed the need for a counsellor for emotional and information support upon believed that all ethnicities were prone to using alternative treatments as these were believed to cure cancer and that these treatments were more 'natural' and less harmful to the body compared to Western medicine. One policymaker noted that Asians were less receptive to support groups due to the lack of openness as

| Strategies
Patients considered family and religious support important, and this is interlinked to the healthcare professionals' and policymakers' suggestion to bring out the patient's voice among family members.
As important as family support is, healthcare professionals and policymakers think that the patient's decision should still be prioritized. As for the lack of knowledge of healthcare professionals regarding alternative treatments, policymakers suggested training for healthcare professionals in this field and patients also suggested that alternative medicine expertize be made available. Healthcare professionals and policymakers also noted that patients become receptive to palliative care once the misconceptions are cleared. We should avoid giving them something (information that may not be true) that we think is hopeful for them, but it is actually not.  Our findings corroborate those of previous studies that have reported decisional conflicts and discrepancies in treatment goals in healthcare provider-patient-caregiver communication. [28][29][30][31][32] There also exists a discordance in patients' healthcare needs assessment between healthcare providers and patients, whereby patients expected encouragement and spiritual support, but healthcare providers focused on treatment efficacy. 33 As one participant mentioned, the training of healthcare providers focuses on healthcare outcomes and not the patient's life goals. Healthcare providers may also believe that they understand the patients' preferences and therefore neglect what patients express. 34,35 Healthcare professionals usually inform the patients about the possible side effects of the treatment, and warn them that there are no guarantees that the treatment will work for them individually. However, alternative medicine at times promises a cure with no side effects, which is preferred by many patients. Patients may also turn to alternative treatments if their concerns regarding Western medicine are not properly addressed or if their treatment expectations are not in line with the promises or actual outcomes. [36][37][38] Our study also found barriers that are pertinent to our setting-a multiracial and multilingual Southeast Asian country. Most studies on consent and decision-making in breast cancer treatments among couples have reported on joint decision-making. [39][40][41] Obtaining spousal consent from husband for all matters related to reproductive issues were practiced by some healthcare proffessionals in certain cultural settings. 42 Due to cultural expectations and obligations, many Asian women depend on their husbands or sons fully to make these decisions as the 'head of the household'. 43,44 The practice of spousal consent suggested in our study contradicts the dyadic approach that is adopted by most couples in breast cancer treatment decision-making. [39][40][41] As breast cancer affects not only the patients but also their families, it is important for healthcare professionals to involve the partner in decisionmaking, but promote a joint decision-making approach. 41,[45][46][47] Previous studies have demonstrated that there are discrepancies between patients' preferred and actual roles in making cancer treatment decisions. 16,48,49 Our study found that our patients were not aware that their participation in decision-making is allowed, indicating that they are unclear about different decision-making roles in breast cancer treatment. Only one study on patients with pulmonary nodules found that some patients were unaware of their role in decision-making or that a decision was being made in their actual roles. 50 Many patients also did not expect to be involved in treatment decision-making and this fuels the paternalistic approach of healthcare professionals who assume that they know the patients' preference, therefore leaving patients out of the picture during decision-making. 34,35 The paternalistic approach that healthcare professionals utilized might also be due to their lack of belief in shared decision-making as one of the challenges, as highlighted in the review by Triantaphyllou et al. 51 This finding adds to what is already known about treatment decision-making in the oncology field.
Patients should also be educated and empowered to ask questions and participate in decision-making, which could be made possible via workshops utilizing role-playing and communication exercises. 52 As suggested by Triantaphyllou et al., 51 new laws and policies for shared decision-making have also been proposed to be enacted and enforced in the country when our population is ready for it. 42 LEE ET AL.

| 2843
We found that most barriers to shared decision-making in metastatic breast cancer care are similar to what is reported in other studies regarding shared decision-making. These include time constraints, challenges in communication and treatment decision uncertainties, which appear to be the most important considerations regardless of the setting. 51,[53][54][55] Similar to the challenges highlighted in a review, 51 our patients have expressed difficulties in understanding the treatment selection process due to the complex nature of oncological treatments. A possible explanation is that the healthcare providers have to follow the timing for consultations that are set by the schedule, as well as the requirement to complete other clinical and administrative tasks, resulting in them hurrying explanations and providing patients with considerable complex medical information. 56 Healthcare providers usually utilize lengthy monologs and medical jargon to speed up the consultation and fail to explore patients' preferences and confirm patients' understanding, causing communication challenges and leading to treatment decision uncertainties. 53,57 The suggestions to include oncology-trained nurses for patient education and task reallocation to improve communication and curb time issues may be considered. 57 In addition, the use of decision aids (a visualized tool) may help to improve patients' understanding of the complex treatment regime for a better shared decision-making process and communication with the healthcare providers. 51,58 The findings of this study have guided the researchers in the development of patients' decision aids in metastatic breast cancer. 59 Some barriers that we identified were also found in other studies but not in those that are predominantly in European populations. These were the strong family involvement in their medical decision-making, language barriers and paternalism in healthcare. 54,55 Asian patients are largely dependent on their families to make decisions and family involvement often raises concerns about patient autonomy, as there was collusion involved. 60,61 The degree of family involvement is influenced by cultural obligations and beliefs; therefore, family members perceive the need to be involved in the disease management. 62 However, family involvement may also be a positive influence in supporting the patient and promoting the patient's autonomy and hence shared decision-making, as patients also take into account their family life in treatment decision-making. 63 The language barrier exists in multiethnic and multilingual countries, or in instances where foreigners reside in other countries. 64,65 Traditionally, the Asian model of healthcare adopts a paternalistic approach and patients generally trust the physicians to make the decisions, in turn contributing to patients being unaware of their decision-making role. 66,67 As this study included patients from diverse background and age group, healthcare professionals and policymakers from diverse setting and levels of experiences, it captures the spectrum of barriers that exist in our setting. The qualitative study design allowed an indepth exploration of the barriers that hindered the process of shared decision-making among patients and healthcare professionals. Our study is the first to look into how cultural influences hinder shared decision-making in metastatic breast cancer care in a Southeast Asian setting and provide strategies to resolve these. We also garnered policymakers' views to understand the big picture of metastatic breast cancer management from a public health perspective and suggest appropriate strategies to curb system barriers.
We may be able to apply these data to implement suggested strategies in metastatic breast cancer patients and other types of lifecritical diseases for similar populations. However, we acknowledge that our study has several limitations. Patients were mainly from the Chinese ethnic group and therefore our findings may not be as relevant to other patient groups. In addition, as the study was conducted in urban and semi-rural areas, the findings may not be transferable to people from rural settings.

| CONCLUSIONS
This study found that practising shared decision-making in the public health sector remains challenging when managing patients with metastatic breast cancer. The utilization of decision-making tools, patient empowerment and healthcare provider training may help address the system and healthcare provider-patient barriers identified in this study but may not be able to address the chronic shortage in oncology healthcare providers in these settings. In addition, the findings of this study are from a Southeast Asian country (Malaysia) and may not be generalizable to other settings.

CONFLICT OF INTEREST
The authors declare no conflict of interest.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request. The data are not publicly available as they include information that could compromise research participant privacy. • Patients seek multiple opinions, leading to decision-making delay.

ORCID
Workforce availability • Lack of manpower or expertize. • No robust system for patients to get support.
• Medical professionals face time constraints due to administrative tasks. • Lack of resources.
Cultural and belief systems • Role as a mother and breadwinner.
• Societal expectation on women to have breasts. • Patient's beliefs regarding alternative treatment (e.g., as cure or immune system booster).
• Differences in Asian and Western cultures lead to different reception to support groups. • Lack of manpower or expertize. • No robust system for patients to get support.
Goals of care • Patients sought prognosis information, but was not discussed.

Paternalism versus autonomy
• Breaking of bad news not done for patients first.
• Collusion by family members.
• Collusion by family members.
• The practice of spousal consent.
T A B L E A4 Suggested strategies to curb shared decision-making implementation issues

Themes Suggestions
Healthcare provider-patient communication • Use certain educational resources to tackle the complexity of oncological treatment information.
• Clear explanation on treatment decisions needed from healthcare professionals.
• Organize trainings for healthcare professionals on educating and counselling patients.
• Healthcare professionals should respect patients' treatment decision and support them when they decide to return to the healthcare scene. • Counsellor should be provided to patients for support after diagnosis.
• Healthcare professionals should have nonjudgemental attitudes.
• More authority should be given to nurses to assist in psychosocial issue management.
• Patients are advised to bring someone along during consultations to tackle patient forgetfulness.

Workforce availability
• Other parties (e.g., NGOs, patient support groups) can be involved in supporting and counselling patients. • Ensure continuity of care by providing a fixed healthcare provider for the patients.
• Allow time for patients to make decisions with the facilitation of patient navigators.
• Practice of value-based medicine.

Cultural and belief systems
• Involve family members in decision-making to avoid conflict.
• Healthcare professionals should being out the patient's voice among family members.
• Family and religious support should still be allowed.
• Misconceptions about palliative care should be addressed.
• Alternative medicine expertize should be provided to patients (e.g., referring to the Chinese medicine department in other hospitals). • Training of healthcare professionals in alternative medicine should be provided.

Goals of care
• Healthcare professionals should explore the patient's life goals and not just health outcomes.
• Honesty and transparency in communication regarding the incurable nature of the disease should be ensured to the patients.
Paternalism versus autonomy • Patients should play an active role in asking the healthcare professionals questions.
• Healthcare professionals should work with patients to identify decision-making roles.
• Healthcare professionals should address confidentiality and ethical issues with sensitivity.
• Healthcare professionals should involve the patients' family members in the decision-making process for support but not to make decisions for the patients.