Perceptions of voluntary workers in cancer organisations on the knowledge of secondary breast cancer symptoms , healthcare communication and diagnostic referral pathways among the patients they support in Northern Ireland

Perceptions of voluntary workers in cancer organisations on the knowledge of secondary breast cancer symptoms , healthcare communication and diagnostic referral pathways among the patients they support in Northern Ireland | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Perceptions of voluntary workers in cancer organisations on the knowledge of secondary breast cancer symptoms , healthcare communication and diagnostic referral pathways among the patients they support in Northern Ireland Charity Ibiyekaribo Boma, Carrie Flannagan, Jacque Warwick This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5663858/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Background: In secondary breast cancer (SBC) cancer cells spread to other areas of the body and at this stage treatment is no longer curative. Studies show increase in SBC prevalence in the United Kingdom (UK) and also linked early detection to lower mortality rates and better prognosis. Studies have reflected that adequate healthcare communication can enhance early diagnosis and improve patients' quality of life. Aim: Explore perceptions of voluntary workers in cancer organisations on knowledge of SBC symptoms, healthcare communication and diagnosis impact among patients they support in Northern Ireland (NI). Method: Descriptive exploratory approach using semi-structured interviews with a purposive sample of five voluntary workers from breast cancer organisations between June-August 2023. Data was analysed using thematic analysis to develop descriptive themes. Results: Themes developed include: Lack of awareness and knowledge of SBC; Communication gap in breast cancer care provision; Impact of diagnosis; Gaps in SBC cancer care. Findings suggest limited support for SBC patients, healthcare communication is not optimal, and impacts patients' experiences and delayed diagnosis. Awareness of patients, public, HCPs is unclear and there are limited SBC nurses, support groups, information on SBC, limited access to clinical trials, and treatment options for SBC patients. Conclusions: SBC awareness is limited in NI, therefore efforts to provide more information and better support for SBC patients through provision of more SBC nurses, support groups and accessibility to clinical trial can facilitate better experiences through their illness journey. HCPs training on person-centred communication can influence better outcomes for SBC patients. Secondary breast cancer Northern Ireland communication patient experiences Healthcare professionals Voluntary support workers 1.0 INTRODUCTION Secondary or metastatic breast cancer is defined as breast cancer that has spread to areas of the body in addition to the first primary breast cancer ( 13 ), it impacts public health significantly. Studies ( 12 ) have shown that there has been a steady increase in the prevalence of secondary breast cancer (SBC) in the UK ( 12 ) with over 57,000 people affected in England alone. In Northern Ireland (NI), there is a prevalence of above 70 cases per year ( 10 ).The awareness of SBC in NI is perceived as not optimal and public health advocates are making attempts to increase the level of awareness ( 8 ). Yet the phenomenon behind this perception is not fully understood as there has been little research into this area. The level of awareness and knowledge of SBC for both patients and health care professionals impacts earlier diagnosis and management ( 20 ). Other factors that may impact the diagnostic pathway are the manner of communication from health care professionals (HCPs), the quality of information relayed to the patients, and the timing of the information ( 4 ). These factors have the potential to influence early detection and diagnosis of the disease and consequently affect the prognosis and quality of life for SBC patient ( 5 ). Although there have been therapeutic advancements made to increase the survival rate and improve the prognosis for SBC patients, research indicates that SBC patients cannot access these as much as primary breast cancer patients can ( 11 ). NI has a prevalence of above 70 cases /year for SBC, with only one SBC nurse to attend to this population of patients ( 7 ). This also applies to SBC support groups which are limited in NI ( 8 ). The evidence depicts that support for SBC patients in NI is limited and patients are most likely on their own for support ( 8 ). Studies ( 4 , 5 ) have shown that the primary breast cancer (PBC) experience is quite different from the experiences of SBC patients. There is a sense of hope, cure, and continuity of life for PBC patients whereas, SBC patients live with the uncertainty regarding their outcome, treatment process and prognosis which perhaps influences some patients going into social isolation ( 5 ). Research( 14 ) has also shown that SBC patients have unmet needs concerning the communication process in their management, treatment, and prognosis, and clear communication and understanding of these concerns can improve their well-being and quality of life. However, literature on the lived experiences of SBC patients in NI and healthcare communication in the care process is limited indicating a need for more research into the impact of healthcare communication on the diagnosis and outcome of SBC. This study aimed to explore the lived experiences of SBC patients in NI from the perspective of voluntary support workers (VSW) in cancer organisations, how the VSWs perceive SBC patients experiences within the healthcare system, the communication processes. Study aims to explore how healthcare communication impacts upon the SBC patients, explore the VSWs experience within their role and identify potential improvements in healthcare communication in this area for this patient cohort. The study finding is relevant as it provides more understanding of the experiences of SBC patients, and the gaps in communication and the cancer care process. From our knowledge, it is the first study on SBC from voluntary workers’ perspective in NI, it can guide the scope for bridging these gaps and improving their experience through the journey of SBC. The finding facilitates a new awareness and deeper understanding into the association between healthcare communication and delay in diagnosis. It also has the potential to inform more studies into strategies to bridge the gap in communication and improve the quality of life and well-being of SBC patients in NI. 2.0 METHODS 2.1 DESIGN A qualitative design was adopted for this study, and it was best suited to the aims and objectives of the study. Deducing an in-depth perspective of the patient's knowledge of the signs and symptoms of SBC from the perspective of the VSWs required a one-to-one interview with semi-structured interview questions in a comfortable setting that allowed participants to speak freely and share their perspectives ( 2 ) 2.2 RECRUITMENT A purposive sample of six VSWs from three different breast cancer support groups was the target for recruitment but due to the strict inclusion criteria of support workers with at least a year of experience with breast cancer patients and limited time frame to conduct this Masters’ dissertation, five participants were recruited into the study. 2.3 PARTICIPANTS Between June 2023 - August 2023 participants were purposively recruited from three cancer support organisations in NI. Inclusion criteria included participants who were employed in a voluntary cancer organisation for one year or more, had direct contact with women who had been diagnosed and treated for SBC within the previous ten years and agreed to participate in remote or face-to-face interviews with the researcher. VSWs were excluded if they did not meet the inclusion criteria, had a personal experience of breast cancer diagnosis and treatment, within any period, or declined participation in the interview, Table (i) displays the recruitment criteria. The participants were recruited from cancer organisations and identified because of their work and exposure to SBC patients in NI. The manager of the cancer organizations served as a gatekeeper who identified VSWs who met the inclusion criteria of the study and agreed to participate. All the participants were adults, 4 females, and one male voluntary worker. The consent form and Participant Information Sheet (PIS) which gave details of the study, what their participation would involve, and contact of the researcher and supervisor were sent via email to all the participants, consent form was signed by both the researcher and participants before the interview date. TABLE (i) INCLUSION CRITERIA EXCLUSION CRITERIA · Employed in a voluntary cancer organisation for one year or more. · Direct contact with women who have been diagnosed and treated for SBC within the previous 10 years. · Able to participate in remote or face-to-face interviews with the researcher. • Working in the sector for less than a year. • Personal experience of breast cancer diagnosis and treatment, within any period of time. • No direct contact with women who have had breast cancer diagnosis and treatment either PBC or SBC within previous 10 years. 2.4 DATA COLLECTION Participants were offered the option of being interviewed either face-to-face or online via Zoom. They all opted for Zoom interviews due to timing and convenience. The interviews were conducted by the researcher between June and August 2023 lasting between 0–40 minutes. A structured interview guide (Table (ii)) allowed for open ended questions to commence the discussions, while follow-up questions were used to further clarify the purpose of the questions and stimulate in-depth knowledge from the VSWs. Prior to the main interviews, a pilot interview was conducted with a volunteer senior researcher to ensure the topic guide was appropriate for the study. All interviews were audio recorded. There was no relationship between the researcher and the participants prior to conducting the interviews. The researcher ensured that participants were comfortable and in a private room at their end to ensure that participants felt comfortable to discuss the topic openly. The interview commenced by building rapport with common questions such as hope your day has been good? ; thank you for coming on board; hope you were able to link into the meeting easily , this is to ensure substantial dialogue and more accurate responses ( 3 ). The questions were open-ended with no right or wrong answers to ensure that participants are comfortable to give objective responses (26), more specific question followed depending on the response of the participants. Table (ii) The semi-structured interview guide Open-ended questions based on research aims and objectives. 1. Tell me about your experience as a support worker caring for breast cancer patients. 2. How your work impacted the patients 3. What is your knowledge about their experiences as breast cancer patients or breast cancer survivors? 4. What is your perception of the knowledge about the signs and symptoms of SBC among the women you have supported? 5. What is your perception of healthcare communication in this area? 6. How do you think healthcare communication can be improved? 7. Probs may include, “Tell me more about that, could you explain that? Could you repeat that?” 2.5 ETHICAL CONSIDERATIONS Ethical approval was obtained from the Ulster University Institute of Nursing and Health Sciences Filter Ethics Committee. Informed written consent was obtained from participants of the research and verbal consent was also obtained from participants before the interview sessions commenced. Interview transcripts were anonymised and data protection procedures were observed. 2.6 DATA ANALYSIS Interview recordings were transcribed on Microsoft Word, dated, named, and stored using codes i.e, P1 interview. A descriptive thematic analysis was conducted based on Braun and Clark's framework ( 1 ). This framework was chosen because its systematic approach provides a detailed and systematic approach to data analysis and identification of themes. The researcher listened to the audio recording severally to familiarize with the dataset. An inductive latent approach was used for analysis, the researcher extracted meanings embedded in the lived experiences of the patients from the perspective of the participants to form codes and develop themes from the codes ( 16 ). The initial coding process was performed semantically from the responses of the participants using Microsoft comments, a more focused coding followed using a latent approach to categorize codes with similar meanings or that addressed the same context of the research into sub-themes ( 19 ). The developed sub-themes were then further examined and compared for similar themes from each interview, the audit trail for generation available in S1 and S2. Sub-themes with the same meaning and describing the same aspect of the research were grouped and given a theme using Microsoft Word comments and colour highlights. This approach enabled the researcher to capture all the salient details and meaningful responses of the participants relevant to the study. 2.7 RIGOUR AND TRUSTWORTHINESS The COREQ criteria for reporting qualitative research study was adhered to in this study. ( 18 ). The four criteria described by Lincoln and Guba (1985) ( 9 ) were adopted to ensure the trustworthiness of the study. All relevant concepts which emerged from the data were `captured, this was validated by the research supervisors thus emitting researcher bias and subjectivity. The VSWs’ quotes help validate the findings. The researcher provided descriptions of the VSWs’ perspectives on the research topic to enable other researchers to judge its transferability ( 9 ). Dependability was accounted for by ensuring the analysis process followed the chosen study framework, was traceable from the dataset, and was documented ( 9 ). 3.0 RESULTS 3.1 INTRODUCTION This chapter reports findings from the study and is presented in two parts. First is the overview of study participants, next is the themes with findings, Participants' responses have been used to give a better understanding of the context of the study. Table (iii) shows the emerging themes and sub-themes. Table (iii): Themes and sub-themes that emerged from the analysis. Sub-Themes Themes Patient lack of knowledge and awareness of SBC HCPs lack of knowledge and awareness of SBC. Lack of knowledge and awareness of SBC Concerns on delivery of information Lack of skill in HCPs communication with SBC patients Quality of information Communication concerns in breast cancer care provision Impact of diagnosis on patient Impact of diagnosis on support worker Impact of diagnosis Unmet needs of patients Access to services Unmet needs of women with SBC. 3.2 OVERVIEW Five VSWs participated in this study from three breast cancer organizations in NI, consisting of four females and one male. VSWs details are presented in Table (iv), all five VSWs have supported SBC patients for one year or more. The responses from all 5 VSWs were comparable, indicating similar perceptions of the patients’ experiences relating to their understanding of SBC. Four themes emerged from thematic analysis of this data: Lack of knowledge and awareness of SBC; Communication concerns in breast cancer care provision; Impact of diagnosis; and unmet needs in cancer care for women with SBC. Each theme had sub-themes, which are discussed below. Table iv : Participants’ profile Support workers Gender: Male Female 1 4 Length of experience with SBC patients 1year ≥ 1year-5 years 5- ≥10years 1 3 1 The number of SBC patients supported 0–5 5- ≤20 20–50 50- ≥100 1 1 2 1 ≤ less than; ≥ greater than. 3.3 Lack of knowledge and Awareness of SBC Two subthemes were merged into this theme: ‘HCP awareness and knowledge of SBC’, ‘Patient awareness and knowledge of SBC’. 3.3.1 HCP awareness and knowledge of SBC: All VSWs perceived a lack of awareness amongst breast cancer patients of the signs and symptoms of secondary breast cancer which they ascribed to a lack of information giving from HCPs within General practitioners, Oncologists, and Nurses. Some VSWs highlighted that most of the patients complained that their consultants did not suspect SBC or make a differential diagnosis of the SBC when they presented some period after their PBC diagnosis with symptoms of pain, gastrointestinal symptoms, and other symptoms. They reasoned that misdiagnosis at earlier stages impacted on the timing of SBC diagnosis, whereby earlier suspicion and investigation would ensure earlier diagnosis. The VSWs also indicated that knowledge within cancer services appear limited. 3.3.2 Patient awareness and knowledge of SBC: The findings of the paper illustrated a divide in the knowledge of SBC and its symptoms amongst SBC patients. One of the VSW who had supported over 37 SBC patients, from her experiences stated that most of her patients were not aware of the possibility of SBC recurrence and this was not discussed at the time of their PBC diagnosis. Another VSW detailed an example of a patient who experienced SBC many years later and was unaware of the possibility of recurrence or the symptoms. Similarly VSW 5, who has supported over 400 SBC patients, expressed that patients do not receive enough information relating to SBC and its associated symptoms from the primary diagnosis. 3.4 Communication concerns in breast cancer care Three sub-themes that contributed to this theme are ‘Concerns on delivery of information’, ‘Lack of skill in HCP communication, and ‘quality of information’. 3.4.1 Concerns on delivery of Information All the VSWs commented on the necessity for clear communication in breast cancer care and how poor communication process impacts the patient’s experience, delays a diagnosis and effect on their quality of life. VSWs highlighted concerns on the process of delivering the news of diagnosis to the patients, giving instances of some patients receiving news of diagnosis over a short phone call and no support in relaying the information to their partners and there was no follow-up (VSW 3). A VSW reflected on the absence of patient-centred communication during consultation with some physicians. Also highlighted that patients were not being listened to by their oncologist and were not given the chance to contribute their concerns to the management process: “Is that some of the women felt that they're not listened to with their primary diagnosis”. (VSW 4). 3.4.2 Lack of skill in HCP communication Regarding the clarity in communication process, a participant commented that some patients reported that they could not remember/ did not understand the information relayed to them during their consultation. VSWs also identified that patients reported that the manner in which their HCP disclosed the information on their diagnosis did not reflect empathy. VSW1 discussed on that some doctors did not express concern for their patients during consultation and may have likely made statements that the patients perceived as insensitive. 3.4.3 Quality of Information In the perspective of the VSWs the information being conveyed to patients is another issue that most participants also reflected on. The VSWs suggested that there were misconceptions with the information relayed to the patients from the health system. Patients discussed that their impression from the health system after treatment of PBC was that they were cured, but they were not informed about the possibility of reoccurrence, what to look for as regards re-occurrence and possible lifestyle interventions they could adopt to reduce the risk of re-occurrence. VSW 1 also highlighted that patients’ said they sorted their test results to compare for themselves and deduce information because they were unsatisfied with the information or explanation given to them by their doctors. The participants commented that the information provided to the public from media and information sources portrays PBC but does not reflect on SBC as a type of breast cancer. The VSWs relayed that there is a misperception in the information around breast cancer from the media, that the highlights of the message is primarily centred on PBC. There was a controversy regarding some patients not wanting to hear /discuss the possibility of reoccurrence and HCPs not communicating/relaying information about SBC at an early stage of breast cancer and some participants discussed on this matter as an important factor. “ SBC is not what women want to be told” ( VSW 5 ) 3.5 Impact of Diagnosis This theme was discussed under two sub themes: ‘impact of diagnosis on patient’ and ‘impact of diagnosis on support worker’. 3.5.1 Impact of diagnosis on patient The findings from this paper reflected on how SBC diagnosis impacts the patient. The findings suggests that the diagnosis impacts on patient with the expectation of managing daily life and having to support their families all the while managing a SBC diagnosis. The VSWs shared their experience with breast cancer patients of younger and older age groups, relaying that the diagnosis impacted more on the lives of the younger patients. They shared that the social life, physical life, responsibilities of the younger mothers both financially due to inability to work optimally and emotionally to their families was more affected by the outcome of SBC. 3.5.2 Impact of diagnosis on Support worker The VSWs reflected on the fact that supporting these women had some degree of impact on them both emotionally, and psychologically. Most of the support workers commented on the efforts put into their duties and how dedicated they were to supporting these women as there appears to be little support for them here in NI. Physically with the statistics of SBC and the small number of secondary breast cancer support groups, there seems to be more challenge for the existing support workers to cater to the needs of these women. The VSWs discussed the challenges that can accompany the responsibilities of catering for SBC patients due to the growing prevalence of the condition since SBC is mostly responsible for mortality from breast cancer. 3.6 Unmet needs of patients with SBC care The study highlighted facts and issues that need to be attended to, it revealed missing factors that affect the experiences of these women here in NI and some root causes of these problems. The two subthemes that contributed to this theme were ‘access to services’, and ‘unmet needs of patients’. 3.6.1 Access to services The findings from the study revealed that SBC patients currently at the time of writing do not have access to drug trials here in NI compared to other parts of the UK and the world. It also revealed that some patients have to travel to access treatment options available in other parts of the UK that are not available here in NI. Another finding on services was that there is only one SBC nurse in the whole of NI and compared to the statistics of SBC patients does not seem suitable enough to cater to all the women living with SBC in NI. Participants all commented on this as a fact and a major challenge in NI. In addition to these challenges, there are more PBC support groups in NI than there are SBC groups, participants commented on this and described SBC as a “lonely cancer” because they could not benefit much from the primary cancer support groups as they are more focused and oriented on the curable PBC. 3.6.2 Unmet needs of patients From the perspective and the knowledge of the support workers, the patients have concerns about gaps in information, awareness, and in the treatment or management process. They identified that patients desire to know more about their prognosis and possible quality of life after diagnosis but often this information is missing and they are left wondering. One of the participants highlighted a survey that her support group featured in a cancer center in NI, whereby feedback revealed that patients desire to have more one-on-one discussions with their doctors regarding their cancer treatment they want to be more involved in the treatment process and to be given the opportunity to make their own choice of treatment. Some of the participants also commented on the workload impacting on the NHS on the quality of care rendered to these patients. The findings also implied that Government funds are not directed towards providing support for these patients which can influence the availability of support services in NI. Likewise, Cancer awareness fundraising campaigns are more allocated to PBC than to SBC. Another respondent commented that “ there are 31 days of breast cancer awareness month but only 1 day is allocated to SBC “( VSW 1 ) , participants reiterated the importance of creating more awareness for SBC patients and for the public concerning SBC. Another participant discussed having a clear management process that is explained and agreed on with the patient involved and ensuring that support is made available all through the journey of SBC. The VSWs suggested communication training for HCPs as they felt that it would impact the quality of information given to the patients and help them make informed decisions concerning the diagnosis 4.0 DISCUSSION The findings from this study provide insight into the experiences of SBC patients, the impact the diagnosis has on the patients themselves, and the support workers caring for them. The study also suggests that the communication process in breast cancer care is not optimal, and the awareness and knowledge of SBC are limited for both HCPs and patients. SBC diagnosis impacts the patient physically, psychologically, and financially. The findings of this study strongly suggest that SBC patients in NI have had poor experiences in their care journey. The study reflected on the physical constraints that patients experience such as pain, fatigue, and their overall well-being which in turn affects their ability to carry out their daily activities and work duties. This experience could explain why patients may not be able to cope with working full-time or even work at all and this can affect their finances especially when they are the main financial provider of their family and with paying their medical treatment bill for those receiving care in a private healthcare setting. (28) also emphasized on the effect of diagnosis on the employment status of breast cancer patients. ( 4 ) discussed the impact that SBC disease had on social life, finances and the families of the patients, their study highlighted that most of the patients could no longer work, and this affected their finances. The VSWs indicated that they perceived the patients felt devastated about their diagnosis, and this affected their emotions and mental well-being. SBC was described as lonely cancer in the findings from our study, and this can be related to the experiences discussed in this study. The hope for cure, and access to support, care services that PBC patients are privy to, is not readily available to SBC patients in NI. In addition, they do not have access to clinical trials and there are limited SBC nurses available to support these patients. This study highlighted the fact that there is only one SBC nurse provided by the health authorities in NI which is a huge gap in service provision similarly, ( 15 ) also discussed the relevance of SBC nurses in supporting patients, their study showed that most of the patients had no access to SBC nurses while the minority that had access to SBC nurses had better support throughout their journey. The study findings also highlighted that patients had to travel outside NI to participate in trials, and access other treatment options not available in NI which incurred more costs for them, a similar finding seen in ( 5 ) where patients were not included in clinical trials due to trial criteria, funds, and long-distance travels. VSWs in our study also expressed the profound notion that surrounds the diagnosis of SBC as patients do not feel that sense of hope, it appears they are living without a clear understanding of what to expect next. The support workers who participated in this study commented on the challenges they faced in supporting these women. Their job roles impacted their lives both psychologically and physically. Most of the participants highlighted that there are a significant number of SBC patients in NI and with a few numbers of support groups for them, the responsibility falls on the existing support groups. Most of the support workers are volunteer workers committed to supporting these women, some of them commented on the time devoted to supporting these women which could even amount to a full-time job role reflecting on the physical and emotional demands of supporting the patients. The findings from this study suggest that communication in the SBC process in NI is not optimal. Most participants gave remarks about the poor communication process and skills between HCPs and the patient, this is similar to findings from ( 22 ) which highlighted the inadequate training, experience and concordance amongst health team regarding goals in patient care as factors affecting communication with patients in end of life care. The participants highlighted that communication is not person-centred, it lacked compassion, and patients complained about not being listened to by their oncologists and that the process of relaying the information of their diagnosis was not appropriate, ( 21 ) reiterated on the relevance of person-centred care as an initiative for improved care for breast cancer patients. Person-centred communication allows patients to contribute their opinions in their management process which has been studied to improve patient well-being, according to ( 14 ), it improved the well-being and quality of life of the patients in that study. Findings in this study highlighted that some of the patients received their diagnosis over a very short conversation, some over the phone without any follow-up support and they felt like they were left to support themselves through their diagnosis. A VSWs commented on a sarcastic statement made by an oncologist during consultation about follow-up, implying that the patient may not come back for treatment after diagnosis and hence the decision to delay commencement of treatment and further investigation. This discussion could give the impression that follow-up after diagnosis is inappropriate as patients are perceived to likely not return after diagnosis, which further reflects on follow up process and a reason why SBC is described as a lonely cancer. This study highlighted that some GPs and Oncologists may not be as compassionate towards the patients as there were comments about oncologists not having eye contact with patients during a consultation, implying that patients could not have been satisfied with the consultation process. ( 6 ) also highlighted the lack of empathy in consultation in their study as this affected the trust patients had in their physician and the communication during consultation, this finding is supported by the findings in ( 25 ) which linked clinician expressed sympathy to increased patient recall during consultation. The study reiterated that patients were not satisfied with the information from their oncologists as they decided to compare their test results and source information for themselves, ( 24 ) also highlighted that cancer survivors patients felt unsatisfied with the information provided and this was linked to the health related quality of life of the patients. Also on communication, the study findings suggested that the quality of information was not adequate, participants highlighted that most of their patients were given the impression that after treatment of primary diagnosis, they were cured and were not informed about the possibility of reoccurrence. The study implied that the information on SBC was not given early at the time of primary diagnosis which could have informed patient treatment decisions and created awareness to mitigate risk factors to SBC. However, there was a controversy on the topic of communication, some participants stated that some of their patients did not want to discuss the possibility of re-occurrence, in other words, wanted to live in denial of the possibility of re-occurrence. The VSWs indicated that patients should have the choice of discussing the possibility of re-occurrence at the time of their PBC treatment. Timing and quality of information are crucial to early detection and impact the outcome of the condition as implied by the findings of the study. The study also revealed that awareness and knowledge of the signs and symptoms of SBC both for patients and HCPs is limited in NI. The findings highlighted that HCPs ranging from nurses, GPs, and oncologists have misdiagnosed or not suspected secondary cancer in patients. The participants shared their perspective from the experiences of their patients, that some GPs and oncologists do not make the differential diagnosis of SBC even when the patients have a history of PBC and are presenting again with non-specific symptoms of SBC. Nonspecific symptoms such as difficulty breathing, back pains, and bowel problems could be a sign of recurrence especially in PBC survivors and should be investigated for possible metastasis. (27) also discussed the issue of GPs not making differential diagnoses of SBC as well as factors delaying diagnosis, in their study comments of some oncologists and GPs misdiagnosing SBC for some other conditions were also highlighted. It seemed that they were not very conversant with the symptoms of SBC, or they did not assume the possibility of SBC because of little awareness and training on SBC. This is similar to the findings of ( 17 ), their study highlighted misdiagnosis of SBC condition and false reassurance which affected patients' outcomes later. Most of the support workers commented that their patients had never heard about SBC before they were diagnosed with it while some other patients were not told what to look out for as regards SBC after primary breast cancer treatment. These patients believed an earlier orientation on the possible signs and symptoms of SBC may have impacted a better outcome for them. Lack of awareness can cause a delay in presentation which consequently can impact the prognosis of the disease. ( 6 , 17 ) both studies discussed patient awareness of SBC as a primary factor in delayed presentation and diagnosis of SBC. In their study the patients did not suspect SBC and did not seek medical attention early and this affected their diagnosis and outcome of the condition. The findings of this study place emphasis on the communication process and this directly impacts all the other findings from this study. 4.1 Strengths of the study The participants of the study were from cancer organizations that support women diagnosed with SBC in NI. Three of the participants have supported a significant number of SBC patients in NI which makes the data substantial. This is the first study to the best of our knowledge, on SBC from the perspective of VSWs in NI which also adds to the strength of the study. 4.2 Limitations of Study This study had a sample size of five participants which was a limitation, six participants were anticipated to participate but due to time constraints and sensitivity of inclusion criteria, only five VSWs were recruited. Findings were second-hand perceptions which may have been impacted by participant bias and recall bias, and identified emotions associated with the VSWs which may have skewed their perspective. It was conducted in NI which limits transferability to other SBC cases in other regions. 5.0 CONCLUSION The study discussed a public health issue that has not been widely researched and highlighted real-life experiences of SBC which is one of the strengths of the study. The findings of this study show that awareness for SBC needs to be advocated for in NI, this will promote quality information and knowledge for both patients and public on SBC. Communication training for HCPs, including person-centred communication will be very beneficial to the care process as poor communication was a contributing factor to poor experiences for patients and delay in diagnosis in the study. Provision and access to specialist SBC nurses to support patients better will improve the quality of life and well-being of the patients. Also access to clinical trials, more treatment options for patients will impact better prognosis and outcomes for SBC patients. The findings from this study can contribute substantial information to the knowledge of the SBC in NI especially for clinicians and cancer care institutions. This study has highlighted gaps in the SBC care process in NI. This can inform HCPs and public health practitioners on the relevance of person-centred with compassionate communication to better support patients, advocate for clinical trials, and more SBC nurses to support patients. More research on this topic is required to further substantiate the findings of the study, investigate healthcare communication in breast cancer and its association with delayed diagnosis, explore strategies to bridge gaps in the SBC care process and the impact of SBC on the patients. Declarations Funding The authors declare that no funds, grants, or other support were received during the preparation of this manuscript. Competing Interests The authors have no relevant financial or non-financial interests to disclose. Author contributions Conceptualization, Data Curation, Formal Analysis, I nvestigation, Methodology, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing (Charity Ibiyekaribo Boma). 2 Project Administration, Resources, Supervision,Validation, Visualization, Writing – Review & Editing (Carrie Flannagan). 3 Supervision,Validation, Visualization, Writing – Review & Editing (Jacque Warwick). Ethical Approval This study was performed in line with the principles of the Declaration of Helsinki. Ethical approval was obtained from the Ulster University Institute of Nursing and Health Sciences Filter Ethics Committee on Informed written consent was obtained from participants of the research and verbal consent was also obtained from participants before the interview sessions commenced. Data Availability The datasets generated during and/or analysed during the current study are not publicly available due to (The datasets is the property of Ulster University) Consent To Participate Informed consent was obtained from all individual participants included in the study. References Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 2006;3(2):77-101. Elwood SA, Martin DG. “Placing” Interviews: Location and Scales of Power in Qualitativ The Professional Geographer 2000;52(4):649-657. Dion Larivière C, Crough Q, Eastwood J. The Effects of Rapport Building on Information Disclosure in Virtual Interviews. Journal of Police and Criminal Psychology 2023;38(2):452-460 Fallowfield L, Starkings R, Palmieri C, Tait A, Stephen L, May S, et al. Living with metastatic breast cancer (LIMBER): experiences, quality of life, gaps in information, care and support of patients in the UK. Supportive Care in Cancer 2023;31(8):459. Fallowfield L, Boyle FM, Travado L, Kiely BE, Jewell P, Aubel D, et al. Gaps in Care and Support for Patients With Advanced Breast Cancer: A Report From the Advanced Breast Cancer Global Alliance. JCO Global Oncology 2021(7):976-984. Gebremariam A, Addissie A, Worku A, Assefa M, Pace LE, Kantelhardt EJ, et al. Time intervals experienced between first symptom recognition and pathologic diagnosis of breast cancer in Addis Ababa, Ethiopia: a cross-sectional study. BMJ Open 2019;9(11):e032228. McGonagle S. Secondary breast cancer patients benefitting from North's first dedicated nurse. Irish News 2022 29th November. McConville, M.L. New support group for patients living with secondary breast cancer set up in Belfast. Irish News 2022 25th February. Nowell L, Norris J, White D, Moules N. Thematic Analysis: Striving to Meet the Trustworthiness Criteria. International Journal of Qualitative 2017;16. Northern Ireland Breast Cancer Registry. Breast cancer in Northern Ireland. 2018; Available at: https://www.qub.ac.uk/research-centres/nicr/FileStore/OfficialStats2018/Factsheets2018/Filetoupload,957480,en.pd.Accessed 16/02/, 2023.. Paget G, McDaid C, Sloan S, Mallon P, Irwin G, McIntosh S. P099. Is there a need for a Secondary Breast Cancer Nurse Specialist in Northern Ireland? European Journal of Surgical Oncology 2019;45:911. Palmieri C, Owide J, Fryer K. Estimated Prevalence of Metastatic Breast Cancer in England, 2016-2021. JAMA Netw Open 2022 Dec 1;5(12):e2248069. Riggio AI, Varley KE, Welm AL. The lingering mysteries of metastatic recurrence in breast cancer. Br J Cancer 2021;124(1):13-26. Spronk, I., Burgers, J.S., Schellevis, F.G. et al. The availability and effectiveness of tools supporting shared decision making in metastatic breast cancer care: a review. BMC Palliative Care 2018 11 May;17(74). Smith AL, Boyle F, Lewis S. Potential inequities in availability of care from breast care nurses: a qualitative study reporting the experiences and perspectives of women with metastatic breast cancer in Australia. BMC Health Services Research 2022;22(1):942. Sundler AJ, Lindberg E, Nilsson C, Palmér L. Qualitative thematic analysis based on descriptive phenomenology. Nurs Open 2019 Apr 7;6(3):733-739. Shamsi U, Khan S, Azam I, Usman S, Maqbool A, Gill T, et al. Patient Delay in Breast Cancer Diagnosis in Two Hospitals in Karachi, Pakistan: Preventive and Life-Saving Measures Needed. JCO Global Oncology 2020;6:873-883. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007;19(6):349-357. Terry G, Hayfield N, Clarke V, Braun V. The SAGE Handbook of Qualitative Research in Psychology. 55 City Road; 55 City Road, London: SAGE Publications Ltd; 2023. Tesfaw A, Alebachew W, Tiruneh M. Why women with breast cancer presented late to health care facility in North-west Ethiopia? A qualitative study. PLoS ONE [Electronic Resource] 2020;15(12):e0243551 Helen.T. One of the team “patient experience of integrated breast cancer care”. Journal of Integrated Care 2022.30(2):216-224 KimuraY, Hosoya M, Toju K, Shimizu C, MoritaT. Barriers to end-of-life discussion with advanced cancer patients as perceived by oncologists, certified/specialized nurses in cancer nursing and medical social care workers. Jpjn, J Clin Oncol. 2020;50(12):1426-1433. Iddrisu, M., Aziato, L.& Dedey, F. Psychological and physical effects of breast cancer diagnosis and treatment on young Ghanian women: a qualitative study. BMC 2020;20:353. Blödt S, Kaiser M, Adam Y , et al .Understanding the role of health information in patients’ experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany. BMJ Open 2018;8: e019576 Westendorp J, Stouthard J, Meijers MC, Neyrinck BAM, de Jong P, van Dulmen S, van Vliet LM. The power of clinician-expressed empathy to increase information recall in advanced breast cancer care: an observational study in clinical care, exploring the mediating role of anxiety. Patient Educ Couns. 2021 May;104(5):1109-1115. doi: 10.1016/j.pec.2020.10.025. Epub 2020 Oct 22. PMID: 33168460. Robinson O. Probing in Qualitative Research interviews: Theory and Practice. Qualitative Research in Psychology. 2023 Jul 21;20(3):382–97. Fouladi, N., Pourfarzi, F., Daneshian, A. and Alimohammadi, S. (2018) Mediating factors in early diagnosis of breast cancer: From initial changes in health to breast cancer detection. Asian Pacific Journal of Cancer Prevention: Apjcp, 19(10), 2751-2755. Alzehr A, Hulme C, Spencer A, Morgan-Trimmer S. The economic impact of cancer diagnosis to individual and their families: a systematic review. Supportive Care in Cancer. 2022 Mar 2;30 Additional Declarations No competing interests reported. Supplementary Files SupportingdocumentsReviewtable.docx Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-5663858","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":392332511,"identity":"1f880867-2ef9-412f-9862-2f012b597e5e","order_by":0,"name":"Charity Ibiyekaribo Boma","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA4UlEQVRIiWNgGAWjYBAC/hkg0uAADz97A4hhQViLxA2IFhnJngMghgRhLQYRYOqAjcGNBLARRGiRbn72mafgDo/kzOdXN/wokGDgb+9OwK9F5pjxbB6DZzz80jllN3uADpM4c3YDfi0SCcbMPAaHeSRn56Td4AFqMZDIJaQl/TNYi8HNM2k3/xClJSIHYovBDfZjt4myReJGTjHjHKBfJHty2G7LGEjwEPQL/4z0zQxv/tyx52c//uzmmz82cvztvfi1gAATD5jiMQCTBJWDAOMPMMX+gCjVo2AUjIJRMPIAACUsRqhnQfa/AAAAAElFTkSuQmCC","orcid":"","institution":"Ulster University","correspondingAuthor":true,"prefix":"","firstName":"Charity","middleName":"Ibiyekaribo","lastName":"Boma","suffix":""},{"id":392332512,"identity":"d7018cc5-d415-4629-b638-9cdd5ec2fb12","order_by":1,"name":"Carrie Flannagan","email":"","orcid":"","institution":"Ulster University","correspondingAuthor":false,"prefix":"","firstName":"Carrie","middleName":"","lastName":"Flannagan","suffix":""},{"id":392332513,"identity":"df13b0b1-c29d-4216-b5d0-8e55ddf48d69","order_by":2,"name":"Jacque Warwick","email":"","orcid":"","institution":"Ulster University","correspondingAuthor":false,"prefix":"","firstName":"Jacque","middleName":"","lastName":"Warwick","suffix":""}],"badges":[],"createdAt":"2024-12-17 17:23:23","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5663858/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5663858/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":76936664,"identity":"f3093c94-ddd5-4783-8036-c1098be2d8bb","added_by":"auto","created_at":"2025-02-22 18:01:28","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":998995,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5663858/v1/78a02058-b517-4d92-88a3-c2d248338165.pdf"},{"id":72170799,"identity":"dad4e44e-8ae4-42bc-a3e5-89b797da5cd9","added_by":"auto","created_at":"2024-12-23 11:02:58","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":20409,"visible":true,"origin":"","legend":"","description":"","filename":"SupportingdocumentsReviewtable.docx","url":"https://assets-eu.researchsquare.com/files/rs-5663858/v1/e673c071f5c39d99447ac9eb.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Perceptions of voluntary workers in cancer organisations on the knowledge of secondary breast cancer symptoms , healthcare communication and diagnostic referral pathways among the patients they support in Northern Ireland","fulltext":[{"header":"1.0 INTRODUCTION","content":"\u003cp\u003eSecondary or metastatic breast cancer is defined as breast cancer that has spread to areas of the body in addition to the first primary breast cancer (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e), it impacts public health significantly. Studies (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) have shown that there has been a steady increase in the prevalence of secondary breast cancer (SBC) in the UK (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) with over 57,000 people affected in England alone. In Northern Ireland (NI), there is a prevalence of above 70 cases per year (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).The awareness of SBC in NI is perceived as not optimal and public health advocates are making attempts to increase the level of awareness (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Yet the phenomenon behind this perception is not fully understood as there has been little research into this area. The level of awareness and knowledge of SBC for both patients and health care professionals impacts earlier diagnosis and management (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Other factors that may impact the diagnostic pathway are the manner of communication from health care professionals (HCPs), the quality of information relayed to the patients, and the timing of the information (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). These factors have the potential to influence early detection and diagnosis of the disease and consequently affect the prognosis and quality of life for SBC patient (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Although there have been therapeutic advancements made to increase the survival rate and improve the prognosis for SBC patients, research indicates that SBC patients cannot access these as much as primary breast cancer patients can (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). NI has a prevalence of above 70 cases /year for SBC, with only one SBC nurse to attend to this population of patients (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). This also applies to SBC support groups which are limited in NI (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). The evidence depicts that support for SBC patients in NI is limited and patients are most likely on their own for support (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eStudies (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) have shown that the primary breast cancer (PBC) experience is quite different from the experiences of SBC patients. There is a sense of hope, cure, and continuity of life for PBC patients whereas, SBC patients live with the uncertainty regarding their outcome, treatment process and prognosis which perhaps influences some patients going into social isolation (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Research(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) has also shown that SBC patients have unmet needs concerning the communication process in their management, treatment, and prognosis, and clear communication and understanding of these concerns can improve their well-being and quality of life. However, literature on the lived experiences of SBC patients in NI and healthcare communication in the care process is limited indicating a need for more research into the impact of healthcare communication on the diagnosis and outcome of SBC.\u003c/p\u003e \u003cp\u003eThis study aimed to explore the lived experiences of SBC patients in NI from the perspective of voluntary support workers (VSW) in cancer organisations, how the VSWs perceive SBC patients experiences within the healthcare system, the communication processes. Study aims to explore how healthcare communication impacts upon the SBC patients, explore the VSWs experience within their role and identify potential improvements in healthcare communication in this area for this patient cohort.\u003c/p\u003e \u003cp\u003eThe study finding is relevant as it provides more understanding of the experiences of SBC patients, and the gaps in communication and the cancer care process. From our knowledge, it is the first study on SBC from voluntary workers\u0026rsquo; perspective in NI, it can guide the scope for bridging these gaps and improving their experience through the journey of SBC. The finding facilitates a new awareness and deeper understanding into the association between healthcare communication and delay in diagnosis. It also has the potential to inform more studies into strategies to bridge the gap in communication and improve the quality of life and well-being of SBC patients in NI.\u003c/p\u003e"},{"header":"2.0 METHODS","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003e2.1 DESIGN\u003c/h2\u003e \u003cp\u003eA qualitative design was adopted for this study, and it was best suited to the aims and objectives of the study. Deducing an in-depth perspective of the patient's knowledge of the signs and symptoms of SBC from the perspective of the VSWs required a one-to-one interview with semi-structured interview questions in a comfortable setting that allowed participants to speak freely and share their perspectives (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003e2.2 RECRUITMENT\u003c/h2\u003e \u003cp\u003eA purposive sample of six VSWs from three different breast cancer support groups was the target for recruitment but due to the strict inclusion criteria of support workers with at least a year of experience with breast cancer patients and limited time frame to conduct this Masters\u0026rsquo; dissertation, five participants were recruited into the study.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003e2.3 PARTICIPANTS\u003c/h2\u003e \u003cp\u003eBetween June 2023 - August 2023 participants were purposively recruited from three cancer support organisations in NI. Inclusion criteria included participants who were employed in a voluntary cancer organisation for one year or more, had direct contact with women who had been diagnosed and treated for SBC within the previous ten years and agreed to participate in remote or face-to-face interviews with the researcher. VSWs were excluded if they did not meet the inclusion criteria, had a personal experience of breast cancer diagnosis and treatment, within any period, or declined participation in the interview, Table (i) displays the recruitment criteria. The participants were recruited from cancer organisations and identified because of their work and exposure to SBC patients in NI. The manager of the cancer organizations served as a gatekeeper who identified VSWs who met the inclusion criteria of the study and agreed to participate. All the participants were adults, 4 females, and one male voluntary worker. The consent form and Participant Information Sheet (PIS) which gave details of the study, what their participation would involve, and contact of the researcher and supervisor were sent via email to all the participants, consent form was signed by both the researcher and participants before the interview date.\u003c/p\u003e \u003cp\u003eTABLE (i)\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabb\" border=\"1\"\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eINCLUSION CRITERIA\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEXCLUSION CRITERIA\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026middot; Employed in a voluntary cancer organisation for one year or more.\u003c/p\u003e \u003cp\u003e\u0026middot; Direct contact with women who have been diagnosed and treated for SBC within the previous 10 years.\u003c/p\u003e \u003cp\u003e\u0026middot; Able to participate in remote or face-to-face interviews with the researcher.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026bull; Working in the sector for less than a year.\u003c/p\u003e \u003cp\u003e\u0026bull; Personal experience of breast cancer diagnosis and treatment, within any period of time.\u003c/p\u003e \u003cp\u003e\u0026bull; No direct contact with women who have had breast cancer diagnosis and treatment either PBC or SBC within previous 10 years.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003e2.4 DATA COLLECTION\u003c/h2\u003e \u003cp\u003eParticipants were offered the option of being interviewed either face-to-face or online via Zoom. They all opted for Zoom interviews due to timing and convenience. The interviews were conducted by the researcher between June and August 2023 lasting between 0\u0026ndash;40 minutes. A structured interview guide (Table (ii)) allowed for open ended questions to commence the discussions, while follow-up questions were used to further clarify the purpose of the questions and stimulate in-depth knowledge from the VSWs. Prior to the main interviews, a pilot interview was conducted with a volunteer senior researcher to ensure the topic guide was appropriate for the study. All interviews were audio recorded. There was no relationship between the researcher and the participants prior to conducting the interviews. The researcher ensured that participants were comfortable and in a private room at their end to ensure that participants felt comfortable to discuss the topic openly. The interview commenced by building rapport with common questions such as \u003cem\u003ehope your day has been good? ; thank you for coming on board; hope you were able to link into the meeting easily\u003c/em\u003e, this is to ensure substantial dialogue and more accurate responses (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). The questions were open-ended with no right or wrong answers to ensure that participants are comfortable to give objective responses (26), more specific question followed depending on the response of the participants.\u003c/p\u003e \u003cp\u003eTable (ii) The semi-structured interview guide\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabc\" border=\"1\"\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabd\" border=\"1\"\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOpen-ended questions based on research aims and objectives.\u003c/p\u003e \u003cp\u003e1. Tell me about your experience as a support worker caring for breast cancer patients.\u003c/p\u003e \u003cp\u003e2. How your work impacted the patients\u003c/p\u003e \u003cp\u003e3. What is your knowledge about their experiences as breast cancer patients or breast cancer survivors?\u003c/p\u003e \u003cp\u003e4. What is your perception of the knowledge about the signs and symptoms of SBC among the women you have supported?\u003c/p\u003e \u003cp\u003e5. What is your perception of healthcare communication in this area?\u003c/p\u003e \u003cp\u003e6. How do you think healthcare communication can be improved?\u003c/p\u003e \u003cp\u003e7. Probs may include, \u0026ldquo;Tell me more about that, could you explain that? Could you repeat that?\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003e2.5 ETHICAL CONSIDERATIONS\u003c/h2\u003e \u003cp\u003e \u003cstrong\u003eEthical approval\u003c/strong\u003e \u003cp\u003e was obtained from the Ulster University Institute of Nursing and Health Sciences Filter Ethics Committee. Informed written consent was obtained from participants of the research and verbal consent was also obtained from participants before the interview sessions commenced. Interview transcripts were anonymised and data protection procedures were observed.\u003c/p\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003e2.6 DATA ANALYSIS\u003c/h2\u003e \u003cp\u003eInterview recordings were transcribed on Microsoft Word, dated, named, and stored using codes i.e, P1 interview. A descriptive thematic analysis was conducted based on Braun and Clark's framework (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). This framework was chosen because its systematic approach provides a detailed and systematic approach to data analysis and identification of themes. The researcher listened to the audio recording severally to familiarize with the dataset. An inductive latent approach was used for analysis, the researcher extracted meanings embedded in the lived experiences of the patients from the perspective of the participants to form codes and develop themes from the codes (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe initial coding process was performed semantically from the responses of the participants using Microsoft comments, a more focused coding followed using a latent approach to categorize codes with similar meanings or that addressed the same context of the research into sub-themes (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). The developed sub-themes were then further examined and compared for similar themes from each interview, the audit trail for generation available in S1 and S2. Sub-themes with the same meaning and describing the same aspect of the research were grouped and given a theme using Microsoft Word comments and colour highlights. This approach enabled the researcher to capture all the salient details and meaningful responses of the participants relevant to the study.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003e2.7 RIGOUR AND TRUSTWORTHINESS\u003c/h2\u003e \u003cp\u003eThe COREQ criteria for reporting qualitative research study was adhered to in this study. (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). The four criteria described by Lincoln and Guba (1985) (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) were adopted to ensure the trustworthiness of the study. All relevant concepts which emerged from the data were `captured, this was validated by the research supervisors thus emitting researcher bias and subjectivity. The VSWs\u0026rsquo; quotes help validate the findings. The researcher provided descriptions of the VSWs\u0026rsquo; perspectives on the research topic to enable other researchers to judge its transferability (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Dependability was accounted for by ensuring the analysis process followed the chosen study framework, was traceable from the dataset, and was documented (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e"},{"header":"3.0 RESULTS","content":"\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\n \u003ch2\u003e3.1 INTRODUCTION\u003c/h2\u003e\n \u003cp\u003eThis chapter reports findings from the study and is presented in two parts. First is the overview of study participants, next is the themes with findings, Participants\u0026apos; responses have been used to give a better understanding of the context of the study. Table (iii) shows the emerging themes and sub-themes.\u003c/p\u003e\n \u003cp\u003eTable (iii): Themes and sub-themes that emerged from the analysis.\u003c/p\u003e\n \u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n \u003ctable id=\"Tabe\" border=\"1\"\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eSub-Themes\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eThemes\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePatient lack of knowledge and awareness of SBC\u003c/p\u003e\n \u003cp\u003eHCPs lack of knowledge and awareness of SBC.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eLack of knowledge and awareness of SBC\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eConcerns on delivery of information\u003c/p\u003e\n \u003cp\u003eLack of skill in HCPs communication with SBC patients\u003c/p\u003e\n \u003cp\u003eQuality of information\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCommunication concerns in breast cancer care provision\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eImpact of diagnosis on patient\u003c/p\u003e\n \u003cp\u003eImpact of diagnosis on support worker\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eImpact of diagnosis\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUnmet needs of patients\u003c/p\u003e\n \u003cp\u003eAccess to services\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUnmet needs of women with SBC.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003cp\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\n \u003ch2\u003e3.2 OVERVIEW\u003c/h2\u003e\n \u003cp\u003eFive VSWs participated in this study from three breast cancer organizations in NI, consisting of four females and one male. VSWs details are presented in Table (iv), all five VSWs have supported SBC patients for one year or more. The responses from all 5 VSWs were comparable, indicating similar perceptions of the patients\u0026rsquo; experiences relating to their understanding of SBC. Four themes emerged from thematic analysis of this data: Lack of knowledge and awareness of SBC; Communication concerns in breast cancer care provision; Impact of diagnosis; and unmet needs in cancer care for women with SBC. Each theme had sub-themes, which are discussed below.\u003c/p\u003e\n \u003cp\u003eTable iv : Participants\u0026rsquo; profile\u003c/p\u003e\n \u003cdiv class=\"gridtable\"\u003e\n \u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n \u003cdiv class=\"colspec\" align=\"left\"\u003e\u0026nbsp;\u003c/div\u003e\n \u003ctable id=\"Tabf\" border=\"1\"\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\u0026nbsp;\u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eSupport workers\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eGender:\u003c/p\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eLength of experience with SBC patients\u003c/p\u003e\n \u003cp\u003e1year\u003c/p\u003e\n \u003cp\u003e\u0026ge;\u0026thinsp;1year-5 years\u003c/p\u003e\n \u003cp\u003e5- \u0026ge;10years\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eThe number of SBC patients supported\u003c/p\u003e\n \u003cp\u003e0\u0026ndash;5\u003c/p\u003e\n \u003cp\u003e5- \u0026le;20\u003c/p\u003e\n \u003cp\u003e20\u0026ndash;50\u003c/p\u003e\n \u003cp\u003e50- \u0026ge;100\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n \u003cp\u003e\u0026le; less than; \u0026ge; greater than.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003e3.3\u003c/h3\u003e\n\u003cp\u003eLack of knowledge and Awareness of SBC\u003c/p\u003e\n\u003cp\u003eTwo subthemes were merged into this theme: \u0026lsquo;HCP awareness and knowledge of SBC\u0026rsquo;, \u0026lsquo;Patient awareness and knowledge of SBC\u0026rsquo;.\u003c/p\u003e\n\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\n \u003ch2\u003e3.3.1\u003c/h2\u003e\n \u003cp\u003eHCP awareness and knowledge of SBC:\u003c/p\u003e\n \u003cp\u003eAll VSWs perceived a lack of awareness amongst breast cancer patients of the signs and symptoms of secondary breast cancer which they ascribed to a lack of information giving from HCPs within General practitioners, Oncologists, and Nurses. Some VSWs highlighted that most of the patients complained that their consultants did not suspect SBC or make a differential diagnosis of the SBC when they presented some period after their PBC diagnosis with symptoms of pain, gastrointestinal symptoms, and other symptoms. They reasoned that misdiagnosis at earlier stages impacted on the timing of SBC diagnosis, whereby earlier suspicion and investigation would ensure earlier diagnosis. The VSWs also indicated that knowledge within cancer services appear limited.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\n \u003ch2\u003e3.3.2\u003c/h2\u003e\n \u003cp\u003ePatient awareness and knowledge of SBC:\u003c/p\u003e\n \u003cp\u003eThe findings of the paper illustrated a divide in the knowledge of SBC and its symptoms amongst SBC patients. One of the VSW who had supported over 37 SBC patients, from her experiences stated that most of her patients were not aware of the possibility of SBC recurrence and this was not discussed at the time of their PBC diagnosis.\u003c/p\u003e\n \u003cp\u003eAnother VSW detailed an example of a patient who experienced SBC many years later and was unaware of the possibility of recurrence or the symptoms. Similarly VSW 5, who has supported over 400 SBC patients, expressed that patients do not receive enough information relating to SBC and its associated symptoms from the primary diagnosis.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003e3.4\u003c/h3\u003e\n\u003cp\u003eCommunication concerns in breast cancer care\u003c/p\u003e\n\u003cp\u003eThree sub-themes that contributed to this theme are \u0026lsquo;Concerns on delivery of information\u0026rsquo;, \u0026lsquo;Lack of skill in HCP communication, and \u0026lsquo;quality of information\u0026rsquo;.\u003c/p\u003e\n\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e\n \u003ch2\u003e3.4.1\u003c/h2\u003e\n \u003cp\u003eConcerns on delivery of Information\u003c/p\u003e\n \u003cp\u003eAll the VSWs commented on the necessity for clear communication in breast cancer care and how poor communication process impacts the patient\u0026rsquo;s experience, delays a diagnosis and effect on their quality of life. VSWs highlighted concerns on the process of delivering the news of diagnosis to the patients, giving instances of some patients receiving news of diagnosis over a short phone call and no support in relaying the information to their partners and there was no follow-up (VSW 3).\u003c/p\u003e\n \u003cp\u003eA VSW reflected on the absence of patient-centred communication during consultation with some physicians. Also highlighted that patients were not being listened to by their oncologist and were not given the chance to contribute their concerns to the management process:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Is that some of the women felt that they\u0026apos;re not listened to with their primary diagnosis\u0026rdquo;.\u003c/em\u003e (VSW 4).\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\n \u003ch2\u003e3.4.2\u003c/h2\u003e\n \u003cp\u003eLack of skill in HCP communication\u003c/p\u003e\n \u003cp\u003eRegarding the clarity in communication process, a participant commented that some patients reported that they could not remember/ did not understand the information relayed to them during their consultation. VSWs also identified that patients reported that the manner in which their HCP disclosed the information on their diagnosis did not reflect empathy. VSW1 discussed on that some doctors did not express concern for their patients during consultation and may have likely made statements that the patients perceived as insensitive.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec19\" class=\"Section2\"\u003e\n \u003ch2\u003e3.4.3\u003c/h2\u003e\n \u003cp\u003eQuality of Information\u003c/p\u003e\n \u003cp\u003eIn the perspective of the VSWs the information being conveyed to patients is another issue that most participants also reflected on. The VSWs suggested that there were misconceptions with the information relayed to the patients from the health system. Patients discussed that their impression from the health system after treatment of PBC was that they were cured, but they were not informed about the possibility of reoccurrence, what to look for as regards re-occurrence and possible lifestyle interventions they could adopt to reduce the risk of re-occurrence.\u003c/p\u003e\n \u003cp\u003eVSW 1 also highlighted that patients\u0026rsquo; said they sorted their test results to compare for themselves and deduce information because they were unsatisfied with the information or explanation given to them by their doctors.\u003c/p\u003e\n \u003cp\u003eThe participants commented that the information provided to the public from media and information sources portrays PBC but does not reflect on SBC as a type of breast cancer. The VSWs relayed that there is a misperception in the information around breast cancer from the media, that the highlights of the message is primarily centred on PBC.\u003c/p\u003e\n \u003cp\u003eThere was a controversy regarding some patients not wanting to hear /discuss the possibility of reoccurrence and HCPs not communicating/relaying information about SBC at an early stage of breast cancer and some participants discussed on this matter as an important factor.\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;\u003cem\u003eSBC is not what women want to be told\u0026rdquo; (\u003c/em\u003eVSW 5\u003cem\u003e)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003e3.5\u003c/h3\u003e\n\u003cp\u003eImpact of Diagnosis\u003c/p\u003e\n\u003cp\u003eThis theme was discussed under two sub themes: \u0026lsquo;impact of diagnosis on patient\u0026rsquo; and \u0026lsquo;impact of diagnosis on support worker\u0026rsquo;.\u003c/p\u003e\n\u003cdiv id=\"Sec21\" class=\"Section2\"\u003e\n \u003ch2\u003e3.5.1\u003c/h2\u003e\n \u003cp\u003eImpact of diagnosis on patient\u003c/p\u003e\n \u003cp\u003eThe findings from this paper reflected on how SBC diagnosis impacts the patient. The findings suggests that the diagnosis impacts on patient with the expectation of managing daily life and having to support their families all the while managing a SBC diagnosis. The VSWs shared their experience with breast cancer patients of younger and older age groups, relaying that the diagnosis impacted more on the lives of the younger patients. They shared that the social life, physical life, responsibilities of the younger mothers both financially due to inability to work optimally and emotionally to their families was more affected by the outcome of SBC.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec22\" class=\"Section2\"\u003e\n \u003ch2\u003e3.5.2\u003c/h2\u003e\n \u003cp\u003eImpact of diagnosis on Support worker\u003c/p\u003e\n \u003cp\u003eThe VSWs reflected on the fact that supporting these women had some degree of impact on them both emotionally, and psychologically. Most of the support workers commented on the efforts put into their duties and how dedicated they were to supporting these women as there appears to be little support for them here in NI.\u003c/p\u003e\n \u003cp\u003ePhysically with the statistics of SBC and the small number of secondary breast cancer support groups, there seems to be more challenge for the existing support workers to cater to the needs of these women.\u003c/p\u003e\n \u003cp\u003eThe VSWs discussed the challenges that can accompany the responsibilities of catering for SBC patients due to the growing prevalence of the condition since SBC is mostly responsible for mortality from breast cancer.\u003c/p\u003e\n\u003c/div\u003e\n\u003ch3\u003e3.6\u003c/h3\u003e\n\u003cp\u003eUnmet needs of patients with SBC care\u003c/p\u003e\n\u003cp\u003eThe study highlighted facts and issues that need to be attended to, it revealed missing factors that affect the experiences of these women here in NI and some root causes of these problems. The two subthemes that contributed to this theme were \u0026lsquo;access to services\u0026rsquo;, and \u0026lsquo;unmet needs of patients\u0026rsquo;.\u003c/p\u003e\n\u003cdiv id=\"Sec24\" class=\"Section2\"\u003e\n \u003ch2\u003e3.6.1\u003c/h2\u003e\n \u003cp\u003eAccess to services\u003c/p\u003e\n \u003cp\u003eThe findings from the study revealed that SBC patients currently at the time of writing do not have access to drug trials here in NI compared to other parts of the UK and the world. It also revealed that some patients have to travel to access treatment options available in other parts of the UK that are not available here in NI.\u003c/p\u003e\n \u003cp\u003eAnother finding on services was that there is only one SBC nurse in the whole of NI and compared to the statistics of SBC patients does not seem suitable enough to cater to all the women living with SBC in NI. Participants all commented on this as a fact and a major challenge in NI.\u003c/p\u003e\n \u003cp\u003eIn addition to these challenges, there are more PBC support groups in NI than there are SBC groups, participants commented on this and described SBC as a \u0026ldquo;lonely cancer\u0026rdquo; because they could not benefit much from the primary cancer support groups as they are more focused and oriented on the curable PBC.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec25\" class=\"Section2\"\u003e\n \u003ch2\u003e3.6.2\u003c/h2\u003e\n \u003cp\u003eUnmet needs of patients\u003c/p\u003e\n \u003cp\u003eFrom the perspective and the knowledge of the support workers, the patients have concerns about gaps in information, awareness, and in the treatment or management process. They identified that patients desire to know more about their prognosis and possible quality of life after diagnosis but often this information is missing and they are left wondering. One of the participants highlighted a survey that her support group featured in a cancer center in NI, whereby feedback revealed that patients desire to have more one-on-one discussions with their doctors regarding their cancer treatment they want to be more involved in the treatment process and to be given the opportunity to make their own choice of treatment. Some of the participants also commented on the workload impacting on the NHS on the quality of care rendered to these patients. The findings also implied that Government funds are not directed towards providing support for these patients which can influence the availability of support services in NI. Likewise, Cancer awareness fundraising campaigns are more allocated to PBC than to SBC. Another respondent commented that \u0026ldquo;\u003cem\u003ethere are 31 days of breast cancer awareness month but only 1 day is allocated to SBC \u0026ldquo;(\u003c/em\u003eVSW 1\u003cem\u003e)\u003c/em\u003e, participants reiterated the importance of creating more awareness for SBC patients and for the public concerning SBC.\u003c/p\u003e\n \u003cp\u003eAnother participant discussed having a clear management process that is explained and agreed on with the patient involved and ensuring that support is made available all through the journey of SBC. The VSWs suggested communication training for HCPs as they felt that it would impact the quality of information given to the patients and help them make informed decisions concerning the diagnosis\u003c/p\u003e\n\u003c/div\u003e"},{"header":"4.0 DISCUSSION","content":"\u003cp\u003eThe findings from this study provide insight into the experiences of SBC patients, the impact the diagnosis has on the patients themselves, and the support workers caring for them. The study also suggests that the communication process in breast cancer care is not optimal, and the awareness and knowledge of SBC are limited for both HCPs and patients. SBC diagnosis impacts the patient physically, psychologically, and financially. The findings of this study strongly suggest that SBC patients in NI have had poor experiences in their care journey. The study reflected on the physical constraints that patients experience such as pain, fatigue, and their overall well-being which in turn affects their ability to carry out their daily activities and work duties. This experience could explain why patients may not be able to cope with working full-time or even work at all and this can affect their finances especially when they are the main financial provider of their family and with paying their medical treatment bill for those receiving care in a private healthcare setting. (28) also emphasized on the effect of diagnosis on the employment status of breast cancer patients. (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) discussed the impact that SBC disease had on social life, finances and the families of the patients, their study highlighted that most of the patients could no longer work, and this affected their finances.\u003c/p\u003e \u003cp\u003eThe VSWs indicated that they perceived the patients felt devastated about their diagnosis, and this affected their emotions and mental well-being. SBC was described as lonely cancer in the findings from our study, and this can be related to the experiences discussed in this study. The hope for cure, and access to support, care services that PBC patients are privy to, is not readily available to SBC patients in NI. In addition, they do not have access to clinical trials and there are limited SBC nurses available to support these patients.\u003c/p\u003e \u003cp\u003eThis study highlighted the fact that there is only one SBC nurse provided by the health authorities in NI which is a huge gap in service provision similarly, (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) also discussed the relevance of SBC nurses in supporting patients, their study showed that most of the patients had no access to SBC nurses while the minority that had access to SBC nurses had better support throughout their journey. The study findings also highlighted that patients had to travel outside NI to participate in trials, and access other treatment options not available in NI which incurred more costs for them, a similar finding seen in (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) where patients were not included in clinical trials due to trial criteria, funds, and long-distance travels. VSWs in our study also expressed the profound notion that surrounds the diagnosis of SBC as patients do not feel that sense of hope, it appears they are living without a clear understanding of what to expect next.\u003c/p\u003e \u003cp\u003eThe support workers who participated in this study commented on the challenges they faced in supporting these women. Their job roles impacted their lives both psychologically and physically. Most of the participants highlighted that there are a significant number of SBC patients in NI and with a few numbers of support groups for them, the responsibility falls on the existing support groups. Most of the support workers are volunteer workers committed to supporting these women, some of them commented on the time devoted to supporting these women which could even amount to a full-time job role reflecting on the physical and emotional demands of supporting the patients.\u003c/p\u003e \u003cp\u003eThe findings from this study suggest that communication in the SBC process in NI is not optimal. Most participants gave remarks about the poor communication process and skills between HCPs and the patient, this is similar to findings from (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e) which highlighted the inadequate training, experience and concordance amongst health team regarding goals in patient care as factors affecting communication with patients in end of life care. The participants highlighted that communication is not person-centred, it lacked compassion, and patients complained about not being listened to by their oncologists and that the process of relaying the information of their diagnosis was not appropriate, (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e) reiterated on the relevance of person-centred care as an initiative for improved care for breast cancer patients. Person-centred communication allows patients to contribute their opinions in their management process which has been studied to improve patient well-being, according to (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e), it improved the well-being and quality of life of the patients in that study.\u003c/p\u003e \u003cp\u003eFindings in this study highlighted that some of the patients received their diagnosis over a very short conversation, some over the phone without any follow-up support and they felt like they were left to support themselves through their diagnosis. A VSWs commented on a sarcastic statement made by an oncologist during consultation about follow-up, implying that the patient may not come back for treatment after diagnosis and hence the decision to delay commencement of treatment and further investigation. This discussion could give the impression that follow-up after diagnosis is inappropriate as patients are perceived to likely not return after diagnosis, which further reflects on follow up process and a reason why SBC is described as a lonely cancer.\u003c/p\u003e \u003cp\u003eThis study highlighted that some GPs and Oncologists may not be as compassionate towards the patients as there were comments about oncologists not having eye contact with patients during a consultation, implying that patients could not have been satisfied with the consultation process. (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) also highlighted the lack of empathy in consultation in their study as this affected the trust patients had in their physician and the communication during consultation, this finding is supported by the findings in (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e) which linked clinician expressed sympathy to increased patient recall during consultation. The study reiterated that patients were not satisfied with the information from their oncologists as they decided to compare their test results and source information for themselves, (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) also highlighted that cancer survivors patients felt unsatisfied with the information provided and this was linked to the health related quality of life of the patients.\u003c/p\u003e \u003cp\u003eAlso on communication, the study findings suggested that the quality of information was not adequate, participants highlighted that most of their patients were given the impression that after treatment of primary diagnosis, they were cured and were not informed about the possibility of reoccurrence. The study implied that the information on SBC was not given early at the time of primary diagnosis which could have informed patient treatment decisions and created awareness to mitigate risk factors to SBC.\u003c/p\u003e \u003cp\u003eHowever, there was a controversy on the topic of communication, some participants stated that some of their patients did not want to discuss the possibility of re-occurrence, in other words, wanted to live in denial of the possibility of re-occurrence. The VSWs indicated that patients should have the choice of discussing the possibility of re-occurrence at the time of their PBC treatment. Timing and quality of information are crucial to early detection and impact the outcome of the condition as implied by the findings of the study.\u003c/p\u003e \u003cp\u003eThe study also revealed that awareness and knowledge of the signs and symptoms of SBC both for patients and HCPs is limited in NI. The findings highlighted that HCPs ranging from nurses, GPs, and oncologists have misdiagnosed or not suspected secondary cancer in patients. The participants shared their perspective from the experiences of their patients, that some GPs and oncologists do not make the differential diagnosis of SBC even when the patients have a history of PBC and are presenting again with non-specific symptoms of SBC. Nonspecific symptoms such as difficulty breathing, back pains, and bowel problems could be a sign of recurrence especially in PBC survivors and should be investigated for possible metastasis. (27) also discussed the issue of GPs not making differential diagnoses of SBC as well as factors delaying diagnosis, in their study comments of some oncologists and GPs misdiagnosing SBC for some other conditions were also highlighted.\u003c/p\u003e \u003cp\u003eIt seemed that they were not very conversant with the symptoms of SBC, or they did not assume the possibility of SBC because of little awareness and training on SBC. This is similar to the findings of (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e), their study highlighted misdiagnosis of SBC condition and false reassurance which affected patients' outcomes later. Most of the support workers commented that their patients had never heard about SBC before they were diagnosed with it while some other patients were not told what to look out for as regards SBC after primary breast cancer treatment. These patients believed an earlier orientation on the possible signs and symptoms of SBC may have impacted a better outcome for them. Lack of awareness can cause a delay in presentation which consequently can impact the prognosis of the disease. (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) both studies discussed patient awareness of SBC as a primary factor in delayed presentation and diagnosis of SBC. In their study the patients did not suspect SBC and did not seek medical attention early and this affected their diagnosis and outcome of the condition. The findings of this study place emphasis on the communication process and this directly impacts all the other findings from this study.\u003c/p\u003e \u003cdiv id=\"Sec27\" class=\"Section2\"\u003e \u003ch2\u003e4.1 Strengths of the study\u003c/h2\u003e \u003cp\u003e The participants of the study were from cancer organizations that support women diagnosed with SBC in NI. Three of the participants have supported a significant number of SBC patients in NI which makes the data substantial. This is the first study to the best of our knowledge, on SBC from the perspective of VSWs in NI which also adds to the strength of the study.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec28\" class=\"Section2\"\u003e \u003ch2\u003e4.2 Limitations of Study\u003c/h2\u003e \u003cp\u003eThis study had a sample size of five participants which was a limitation, six participants were anticipated to participate but due to time constraints and sensitivity of inclusion criteria, only five VSWs were recruited. Findings were second-hand perceptions which may have been impacted by participant bias and recall bias, and identified emotions associated with the VSWs which may have skewed their perspective. It was conducted in NI which limits transferability to other SBC cases in other regions.\u003c/p\u003e \u003c/div\u003e"},{"header":"5.0 CONCLUSION","content":" \u003cp\u003eThe study discussed a public health issue that has not been widely researched and highlighted real-life experiences of SBC which is one of the strengths of the study. The findings of this study show that awareness for SBC needs to be advocated for in NI, this will promote quality information and knowledge for both patients and public on SBC. Communication training for HCPs, including person-centred communication will be very beneficial to the care process as poor communication was a contributing factor to poor experiences for patients and delay in diagnosis in the study. Provision and access to specialist SBC nurses to support patients better will improve the quality of life and well-being of the patients. Also access to clinical trials, more treatment options for patients will impact better prognosis and outcomes for SBC patients. The findings from this study can contribute substantial information to the knowledge of the SBC in NI especially for clinicians and cancer care institutions.\u003c/p\u003e \u003cp\u003e This study has highlighted gaps in the SBC care process in NI. This can inform HCPs and public health practitioners on the relevance of person-centred with compassionate communication to better support patients, advocate for clinical trials, and more SBC nurses to support patients. More research on this topic is required to further substantiate the findings of the study, investigate healthcare communication in breast cancer and its association with delayed diagnosis, explore strategies to bridge gaps in the SBC care process and the impact of SBC on the patients.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThe authors declare that no funds, grants, or other support were received during the preparation of this manuscript.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eCompeting Interests\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThe authors have no relevant financial or non-financial interests to disclose.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eAuthor contributions\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConceptualization,\u003c/strong\u003e\u003cstrong\u003eData Curation,\u003c/strong\u003e\u003cstrong\u003eFormal Analysis,\u003c/strong\u003eI\u003cstrong\u003envestigation,\u003c/strong\u003e\u003cstrong\u003eMethodology, Visualization,\u003c/strong\u003e\u003cstrong\u003eWriting \u0026ndash; Original Draft Preparation,\u003c/strong\u003e\u003cstrong\u003eWriting \u0026ndash; Review \u0026amp; Editing (Charity Ibiyekaribo Boma).\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003csup\u003e2\u003c/sup\u003e\u003c/strong\u003e \u003cstrong\u003eProject Administration,\u003c/strong\u003e\u003cstrong\u003eResources, Supervision,Validation, Visualization,\u003c/strong\u003e\u003cstrong\u003eWriting \u0026ndash; Review \u0026amp; Editing (Carrie Flannagan).\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003csup\u003e3\u003c/sup\u003e\u003c/strong\u003e\u003cstrong\u003e\u0026nbsp;Supervision,Validation,\u003c/strong\u003e Visualization, \u003cstrong\u003eWriting \u0026ndash; Review \u0026amp; Editing (Jacque Warwick).\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthical Approval\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThis study was performed in line with the principles of the Declaration of Helsinki.\u0026nbsp;\u003c/em\u003eEthical approval was obtained from the Ulster University Institute of Nursing and Health Sciences Filter Ethics Committee on Informed written consent was obtained from participants of the research and verbal consent was also obtained from participants before the interview sessions commenced.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eData Availability\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eThe datasets generated during and/or analysed during the current study are not publicly available due to (The datasets is the property of Ulster University)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent To Participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eInformed consent was obtained from all individual participants included in the study.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eBraun V, Clarke V. 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The power of clinician-expressed empathy to increase information recall in advanced breast cancer care: an observational study in clinical care, exploring the mediating role of anxiety. Patient Educ Couns. 2021 May;104(5):1109-1115. doi: 10.1016/j.pec.2020.10.025. Epub 2020 Oct 22. PMID: 33168460.\u003c/li\u003e\n\u003cli\u003eRobinson O. Probing in Qualitative Research interviews: Theory and Practice. Qualitative Research in Psychology. 2023 Jul 21;20(3):382\u0026ndash;97.\u003c/li\u003e\n\u003cli\u003eFouladi, N., Pourfarzi, F., Daneshian, A. and Alimohammadi, S. (2018) Mediating factors in early diagnosis of breast cancer: From initial changes in health to breast cancer detection. Asian Pacific Journal of Cancer Prevention: Apjcp, 19(10), 2751-2755.\u003c/li\u003e\n\u003cli\u003eAlzehr A, Hulme C, Spencer A, Morgan-Trimmer S. The economic impact of cancer diagnosis to\u0026nbsp;individual and their families: a systematic review. Supportive Care in Cancer. 2022 Mar 2;30\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Secondary breast cancer, Northern Ireland, communication, patient experiences, Healthcare professionals, Voluntary support workers","lastPublishedDoi":"10.21203/rs.3.rs-5663858/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5663858/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"Background: In secondary breast cancer (SBC) cancer cells spread to other areas of the body and at this stage treatment is no longer curative. Studies show increase in SBC prevalence in the United Kingdom (UK) and also linked early detection to lower mortality rates and better prognosis. Studies have reflected that adequate healthcare communication can enhance early diagnosis and improve patients' quality of life.\nAim: Explore perceptions of voluntary workers in cancer organisations on knowledge of SBC symptoms, healthcare communication and diagnosis impact among patients they support in Northern Ireland (NI). Method: Descriptive exploratory approach using semi-structured interviews with a purposive sample of five voluntary workers from breast cancer organisations between June-August 2023. Data was analysed using thematic analysis to develop descriptive themes.\nResults: Themes developed include: Lack of awareness and knowledge of SBC; Communication gap in breast cancer care provision; Impact of diagnosis; Gaps in SBC cancer care. Findings suggest limited support for SBC patients, healthcare communication is not optimal, and impacts patients' experiences and delayed diagnosis. Awareness of patients, public, HCPs is unclear and there are limited SBC nurses, support groups, information on SBC, limited access to clinical trials, and treatment options for SBC patients.\nConclusions: SBC awareness is limited in NI, therefore efforts to provide more information and better support for SBC patients through provision of more SBC nurses, support groups and accessibility to clinical trial can facilitate better experiences through their illness journey. HCPs training on person-centred communication can influence better outcomes for SBC patients.","manuscriptTitle":"Perceptions of voluntary workers in cancer organisations on the knowledge of secondary breast cancer symptoms , healthcare communication and diagnostic referral pathways among the patients they support in Northern Ireland","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-12-23 11:02:54","doi":"10.21203/rs.3.rs-5663858/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"143cc6df-7510-47cc-81b2-1f010ef3de96","owner":[],"postedDate":"December 23rd, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-02-22T17:53:17+00:00","versionOfRecord":[],"versionCreatedAt":"2024-12-23 11:02:54","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-5663858","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5663858","identity":"rs-5663858","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}