Communication Experiences in Primary Healthcare with Refugees and Asylum Seekers: A Literature Review and Narrative Synthesis.

Refugee and asylum seeker population numbers are rising in Western countries. Understanding the communication experiences, within healthcare encounters, for this population is important for providing better care and health outcomes. This review summarizes the literature on health consultation communication experiences of refugees and asylum seekers living in Western countries. Seven electronic databases were searched from inception to 31 March 2019. Studies were included if they aimed to improve, assess or report on communication/interaction in the primary health care consultation setting with refugees or asylum seekers, and were conducted in Western countries. A narrative synthesis of the literature was undertaken. Thematic analysis of the 21 included articles, showed that refugees and asylum seekers experience a range of communication challenges and obstacles in primary care consultations. This included practical and relational challenges of organizing and using informal and formal interpreters and cultural understanding of illness and healthcare. Non-verbal and compassionate care aspects of communication emerged as an important factor in helping improve comfort and trust between healthcare providers (HCP) and refugees and asylum seekers during a healthcare encounter. Improvements at the systems level are needed to provide better access to professional interpreters, but also support compassionate and humanistic care by creating time for HCPs to build relationships and trust with patients

“It’s about our bodies… we have the right to know this stuff”: a qualitative focus group study on Australian women’s perspectives on breast density

Objective This study aimed to explore Australian women’s current knowledge, perspectives and attitudes about breast density (BD); and information needs to inform effective evidence-based communication strategies. Methods Fourteen online focus group sessions with a total of 78 women in New South Wales and Queensland, Australia aged 40–74 years without a personal diagnosis of breast cancer were conducted. Audio-recorded data was transcribed and analysed thematically. Results Women had a very limited knowledge of BD. Overall, women expressed a preference for more frequent mammograms and/or supplemental screening should they be told they had dense breasts, despite being presented with information on potential downsides of additional testing. The majority of women were supportive of the notion of BD notification, often suggesting they had a ‘right to know’ and they would prefer to be educated and informed about it. Conclusion The potential of being informed and notified of BD is found to be of interest and importance to Australian women of breast screening age despite lacking current knowledge. Practice Implications This study highlights that policy makers and screening services need to consider how to weigh up these views and preferences of women with current evidence surrounding BD in deciding about implementing population-based BD notification

Australian Women’s Intentions and Psychological Outcomes Related to Breast Density Notification and Information

Objective To assess the effect of mammographic breast density notification and information provision on women’s intention to seek supplemental screening and psychological outcomes. Design, Setting, and Participants A 3-arm online randomized clinical trial was conducted from August 10 to 31, 2021. Data analysis was conducted from September 1 to October 20, 2021. Participants included Australian residents identifying as female, aged between 40 and 74 years, with no history of breast cancer who were residing in jurisdictions without existing breast density notification with screening mammograms. Interventions Women were randomized to receive 1 of the following hypothetical breast screening test result letters: screening mammogram result letter without breast density messaging (control), screening mammogram result letter with breast density messaging and an existing density information letter taken from a screening service in Australia (intervention 1), and screening mammogram result letter with breast density messaging and a health literacy–sensitive version of the letter adapted for people with lower health literacy (intervention 2). Main Outcomes and Measures Primary outcomes were intention to seek supplemental screening; feeling anxious (uneasy, worried, or nervous), informed, or confused; and having breast cancer worry

Exploring the opportunities and challenges to adapt existing shared decision-making strategies and tools in contraceptive counselling for Chinese migrant women living in Australia

Shared decision-making (SDM) calls for improved patient-provider communication, through which healthcare decisions are made collaboratively between the patient and the healthcare provider. In Australia, SDM has gained increased momentum in the healthcare policy and research agenda in recent years. Australia is a multicultural country with a large migrant population. Therefore, the need for exploring the opportunities and challenges to extend, adapt and apply such an approach to healthcare decision-making among culturally and linguistically diverse population groups is imperative. Migrants from Chinese ethnicity are among one of the largest overseas-born groups in Australia. Contraceptive method-choice decisions are highly preference-sensitive and are ideal for SDM in clinical settings. SDM can be facilitated and complemented by the use of decision support tools such as patient decision aid (PDA)s. SDM and the use of PDAs are shown to improve women’s knowledge of contraceptive methods and lead to patient-centred contraceptive counselling experiences and informed decisions. However, there is a lack of research into how existing SDM strategies, including the use of PDAs, in contraceptive counselling can be better adapted for Chinese migrant women living in Australia. Aims The overarching aim of this thesis was to explore improved ways to adapt existing SDM strategies and PDAs in contraceptive counselling for Chinese migrant women living in Australia. Using a stepwise approach, the studies (Chapters) contained within this thesis investigated the following specific objectives: i) identify interventions that aimed to improve patient participation in decision-making during patient-provider encounters in non-Western countries and synthesise factors that are influencing their effectiveness (Chapter 2); ii) explore the relationships between individuals’ core cultural and personal attitudinal values and their desire for medical information and self-involvement in medical decision-making in Australia and China (Chapter 3); iii) adapt an existing PDA in contraceptive counselling for Chinese migrant women living in Australia and explore potential strategies to support SDM(Chapter 4); iv) explore Chinese migrant women’s experiences and perceptions of choosing contraceptive methods and their decision-support needs (Chapter 5); v) explore healthcare providers’ experiences with providing contraceptive care for Chinese migrant women and their perceptions of the challenges and opportunities to engage Chinese migrant women in SDM during contraceptive counselling (Chapter 6); vi) explore the perceived usefulness, acceptability, and feasibility of the adapted PDA with both the Chinese migrant women and the healthcare providers (Chapter 7). Methods This thesis comprises studies that applied a variety of research methodologies, including systematic review of literature (Chapter 2), quantitative data analysis (Chapter 3), and qualitative interviews (Chapter 4, 5, 6 and 7). In Chapter 2, eight databases were systematically searched for interventional studies (randomised controlled trials, controlled or uncontrolled before-and-after studies, and interrupted time-series studies) that were conducted in non-Western countries. Included studies were analysed and reported using the narrative synthesis method. In Chapter 3, existing data from Australia and China on medical decision-making and its influencing cultural and personal factors were analysed using structural equation modelling method. In Chapter 4, a detailed description of a 6-stage process for adapting an existing contraceptive method-choice PDA and potential decision support strategies for Chinese migrant women living in Australia was provided. In Chapters 5, 6, and 7, 22 women from Chinese ethnicity who were recently living in Australia and 20 healthcare providers who were experienced in providing contraceptive counselling for Chinese migrants were interviewed. Collected data (audio-recorded transcripts) was analysed using the thematic analysis method (Chapter 5 and 6) and the content analysis method (Chapter 7). Key findings The systematic review findings from Chapter 1 showed that interventions to promote patient participation in healthcare decisions during medical encounters were more likely to be effective in non-Western cultural contexts if the following interventional elements were incorporated. Key interventional elements that were common among studies that reported positive outcomes were patient and/or provider communication skills training, and PDAs which were provided to patients and/or providers who received training on communication skills or briefing on utilising the PDAs. The structural equation model analysis from Chapter 2 found that core cultural values (independence and interdependence) and a personal attitudinal value (health locus of control) similarly influenced individuals’ desire for medical information in both China and Australia. Only one cultural value (power distance) was found to influence individuals’ desire for self-involvement in decision-making in both countries; however, the influence took opposite directions in China versus Australia. In Chapter 4, a six-stage process for adapting an existing encounter PDA (‘Right For Me’ birth control tool) and exploring decision-support strategies for both the Chinese migrant women and healthcare providers was piloted. Those stages involved were: 1) selection and appraisal of source PDA; 2) review by content experts; 3) content validity and usability testing; 4) translation into the Chinese language; 5) decisional needs assessment; 6) acceptability, usability, and perceived feasibility testing of the adapted PDA. Chapter 5 results revealed that there was a strong preference among Chinese migrant women towards ‘natural’ or non-invasive methods such as condoms, withdrawal, or fertility awareness-based methods. At the same time, there was a strong sense of rejection towards methods involving hormones or (Intrauterine devices) IUDs. Most women had not visited or perceived it necessary to visit healthcare providers for contraceptive advice or services. Many women accessed contraceptive related information on Chinese language websites or social networking sites. Chapter 6 revealed that healthcare providers faced unique challenges in communicating and engaging with Chinese migrants during contraceptive counselling sessions. Such challenges included the opportunistic nature of the consultations, language barriers, women’ lack of sexual and reproductive health knowledge, and negative attitudes/beliefs towards methods involving hormones. Chapter 7 results showed that both the Chinese migrant women and healthcare providers perceived the encounter PDA to be of good design, informative, and useful in assisting women’s decision-making about contraceptives. Chinese migrant women suggested not to limit the use of the PDA to the clinical consultation sessions. Healthcare providers’ main concern was the information load of the PDA, which they perceived as potentially overwhelming for women. There were also concerns about and the feasibility of reviewing all pages of the PDA with women during one consultation. Such concerns were likely to ease with the explanation of how to use the PDA effectively. Conclusion: The body of work presented in this thesis adds to the limited yet growing number of literature on SDM with people from diverse cultural and linguistic backgrounds. The findings imply that promoting active patient participation in decision-making during patient-provider encounters is more likely to be feasible if patients and/or providers are provided with communication skills training with or without the provision of PDAs. An individual’s desire for self-involvement in medical decision-making was largely unpredictable by the cultural and personal values that an individual possess both in China and Australia. Therefore, cultural stereotyping individuals’ preference for involvement in medical decisions should be avoided, and individuals should be provided with equal opportunities to be involved in their medical decisions regardless of their cultural background. During contraceptive counselling encounters between the Chinese migrant women and the healthcare providers, the PDA that was adapted using a six-stage framework has the potential to serve as a useful tool to facilitate SDM and informed decisions. To improve the perceived feasibility and potential implementation of the PDA, providing HCPs with training on how to use the PDA might be necessary. The process for adaptation employed in this thesis can serve as an example for future efforts to extend the adaptation of PDAs on various topics for diverse patient population groups in Australia and beyond

Australian Women’s Responses to Breast Density Information: A Content Analysis

Breast density (BD) is an independent risk factor for breast cancer and reduces mammographic sensitivity. This study explored women’s responses and intentions if notified that they had dense breasts. Methods: Content analysis was used to assess responses from a written questionnaire undertaken in conjunction with focus groups on BD involving 78 Australian women aged 40–74. Results: Half the women reported that they would feel a little anxious if notified they had dense breasts, while 29.5% would not feel anxious. The most common theme (29.5%) related to anxiety was the psychosocial impact of the possibility of developing cancer, and women believed that being better informed could help with anxiety (26.9%). When asked what they would do if notified of having dense breasts, the most common response was to consult their doctor for information/advice (38.5%), followed by considering supplemental screening (23%). Consequently, when asked directly, 65.4% were interested in undergoing supplemental screening, while others (10.3%) said they “wouldn’t worry about it too much”. Discussion: These findings have important implications for health systems with population-based breast screening programs that are currently considering widespread BD notification in terms of the impact on women, health services and primary care

General practitioners’ (GPs) understanding and views on breast density in Australia: A qualitative interview study

Objectives: To understand general practitioners’ (GPs’) awareness and knowledge of mammographic breast density (BD) and their perspectives around information and potential notification of BD for women. Design: Qualitative study using semistructured telephone interviews. Interviews were audiorecorded, transcribed and analysed using framework analysis. Setting Australia. Participants: Australian GPs (n=30). Results: GPs had limited knowledge of BD and little experience discussing BD with women. There were mixed views on notification of BD with some GPs believing this information would help informed decision making about breast health and that women have the right to know any information about their bodies. While others were concerned about causing unnecessary anxiety and were worried about the uncertainty about what to advise women to do with this information, particularly in relation to supplemental breast screening. The need for an equitable system where all women are either notified or not, and also provided with publicly funded supplemental screening was raised by GPs. Overall, there was high interest in education, training and support around the topic of BD. Conclusions: Australian GPs require education, support and evidence-based guidelines to have discussions with women with dense breasts and help manage their risk, especially if widespread notification is to be introduced in population-based screening programmes

“It\u27s about our bodies… we have the right to know this stuff”: A qualitative focus group study on Australian women\u27s perspectives on breast density

Objective: This study aimed to explore Australian women\u27s current knowledge, perspectives and attitudes about breast density (BD); and information needs to inform effective evidence-based communication strategies. Methods: Fourteen online focus group sessions with a total of 78 women in New South Wales and Queensland, Australia aged 40–74 years without a personal diagnosis of breast cancer were conducted. Audio-recorded data was transcribed and analysed thematically. Results: Women had a very limited knowledge of BD. Overall, women expressed a preference for more frequent mammograms and/or supplemental screening should they be told they had dense breasts, despite being presented with information on potential downsides of additional testing. The majority of women were supportive of the notion of BD notification, often suggesting they had a ‘right to know’ and they would prefer to be educated and informed about it. Conclusion: The potential of being informed and notified of BD is found to be of interest and importance to Australian women of breast screening age despite lacking current knowledge. Practice Implications: This study highlights that policy makers and screening services need to consider how to weigh up these views and preferences of women with current evidence surrounding BD in deciding about implementing population-based BD notification

A systematic assessment of online international breast density information

Background: Breast density has become a topic of international discussion due to its associated risk of breast cancer. As online is often a primary source of women’s health information it is therefore essential that breast density information it is understandable, accurate and reflects the best available evidence. This study aimed to systematically assess online international breast density information including recommendations to women. Methods: Searches were conducted from five different English-speaking country-specific Google locations. Relevant breast density information was extracted from the identified websites. Readability was assessed using the SHeLL Editor, and understandability and actionability using the Patient Education Materials Assessment Tool (PEMAT). A content analysis of specific recommendations to women was also conducted. Results: Forty-two eligible websites were identified and systematically assessed. The included informational content varied across websites. The average grade reading level across all websites was 12.4 (range 8.9–15.4). The mean understandability was 69.9% and the mean actionability was 40.1%, with 18/42 and 39/42 websites respectively scoring lower than adequate (70%). Thirty-six (85.7%) of the websites had breast density-related recommendation to women, with ‘talk to your doctor’ (n = 33, 78.6%) the most common. Conclusions: Online information about breast density varies widely and is not generally presented in a way that women can easily understand and act on, therefore greatly reducing the ability for informed decision-making. International organisations and groups disseminating breast density information need to ensure that women are presented with health literacy-sensitive and balanced information, and be aware of the impact that recommendations may have on practice

Australian women\u27s intentions and psychological outcomes related to breast density notification and information: A randomized clinical trial.

Importance Whether the benefits of notifying women about breast density outweigh the potential harms to inform current and future mammogram screening practice remains unknown. Objective To assess the effect of mammographic breast density notification and information provision on women’s intention to seek supplemental screening and psychological outcomes. Design, Setting, and Participants A 3-arm online randomized clinical trial was conducted from August 10 to 31, 2021. Data analysis was conducted from September 1 to October 20, 2021. Participants included Australian residents identifying as female, aged between 40 and 74 years, with no history of breast cancer who were residing in jurisdictions without existing breast density notification with screening mammograms. Interventions Women were randomized to receive 1 of the following hypothetical breast screening test result letters: screening mammogram result letter without breast density messaging (control), screening mammogram result letter with breast density messaging and an existing density information letter taken from a screening service in Australia (intervention 1), and screening mammogram result letter with breast density messaging and a health literacy–sensitive version of the letter adapted for people with lower health literacy (intervention 2). Main Outcomes and Measures Primary outcomes were intention to seek supplemental screening; feeling anxious (uneasy, worried, or nervous), informed, or confused; and having breast cancer worry. Results A total of 1420 Australian women were randomized and included in the final analysis. The largest group consisted of 603 women aged 60 to 74 years (42.5%). Compared with the control cohort (n = 480), women who received density notification via intervention 1 (n = 470) and intervention 2 (n = 470) reported a significantly higher intention to seek supplemental screening (0.8% vs 15.6% and 14.2%; P \u3c .001) and feeling anxious (14.2% vs 49.4% and 48.5%; P \u3c .001), confusion (7.8% vs 24.0% and 23.6%; P \u3c .001), and worry about breast cancer (quite/very worried: 6.9% vs 17.2% and 15.5%; P \u3c .001). There were no statistically significant differences in these outcomes between the 2 intervention groups. Conclusions and Relevance In this randomized clinical trial, breast density notification and information integrated with screening mammogram results increased women’s intention to seek supplemental screening and made women feel anxious, confused, or worried about breast cancer. These findings have relevance and implications for mammogram screening services and policy makers considering whether and, if so, how best to implement widespread notification of breast density as part of mammography screening. Trial Registration ACTRN1262100025380

Australian general practitioners’ current knowledge, understanding, and feelings regarding breast density information and notification: A cross-sectional study

Background: There is a lack of evidence around Australian general practitioners’ (GPs) views of issues surrounding breast density. The current study aimed to quantitatively assess GPs’ current knowledge, understanding, and feelings around breast density information and notification. Methods: This study involved a cross-sectional survey using an online platform to collect quantitative data from Australian GPs. Survey data were analysed with descriptive statistics. Results: A total 60 responses from GPs were analysed. Most (n = 58; 97%) had heard or read about breast density and nearly 90% (n = 52; 87%) have had discussions about breast density with patients. Three-quarters (n = 45; 75%) were supportive of making breast density notification mandatory for patients with dense tissue and a similar proportion (n = 45/58; 78%) felt they need or want more education on breast density. Conclusions: There is strong support for notifying patients of breast density, and interest in further education and training among the surveyed GPs. As GPs play a central role in cancer prevention and control, their involvement in discussions related to breast density notification, evaluation and appraisal of evidence, development of communication strategies, and participation in ongoing research on the topic will be indispensable