Cancer Disclosure Research Articles

Cancer disclosure-account from a pediatric oncology ward in Egypt.

Informing the child about his/her diagnosis and treatment plan is essential; research has shown that it is related to the patient's quality of life and adherence to medication. For 7months during 2008 (February to September), 2 study-specific questionnaires were constructed and administered to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital Egypt. Among the 313 eligible parents of children diagnosed with cancer, 304 (97%) answered the first questionnaire and 281 (92%) answered the second questionnaire. We found that nearly three-quarters (72%) of the parents had their child's cancer diagnosis communicated by the physician. Among the 72%, the rate of the children present with the parent or parents during the disease disclosure conversation was 39% (n=85/219). The majority of the children were in the age group 5-18years (55%). Our findings indicate that cancer disclosure at the Children's Cancer Hospital is to a certain degree common; yet even when disclosure does take place, it is mainly in the absence of the child. Moreover, the information provided during the conversation may not be fully comprehended by the parent or the child because of the physician's misleading use of terms when disclosing the disease. Therefore, better practice should be developed for disease disclosure, and proper communication should be established between the patients and the provider; patient autonomy should also have an influence in the clinical practice.

Exploring perceptions and preferences of patients, families, physicians, and nurses regarding cancer disclosure: a descriptive qualitative study.

The aim of this study was to explore perceptions and preferences of cancer patients, their families, physicians, and nurses in disclosing cancer diagnosis. We selected 35 participants (15 patients, 6 family members, 9 physicians, and 5 nurses) by purposive sampling. We collected data by in-depth interviews and used qualitative content analysis for analysis. Data analysis resulted in three categories: (1) establishing a basis for breaking bad news; (2) adjusting to the tragedy of bad news; and (3) helping the patient cope with the shattering news. The first category comprised the following subcategories: provision of proper background; adhering to a patient-centered approach; and being unhurried. The second category comprised the following subcategories: cancer as a cultural taboo; death as a frightening vision of unattainable dreams and punishment; hope as an opening in the utter darkness of disease; and empathy as liniment for the injuries of disease. The third category comprised the following subcategories: the family as the most powerful healing source for the patient; the force of spirituality in achieving peace; and a multiprofessional, harmonious physician-centered team. The findings of this study can help healthcare teams break the bad news of cancer diagnosis in a more effective, satisfactory, and culture-based manner for patients and their families.

Breaking Bad News: Patient Preferences and the Role of Family Members when Delivering a Cancer Diagnosis.

Western physicians tend to favour complete disclosure of a cancer diagnosis to the patient, while non-Western physicians tend to limit disclosure and include families in the process; the latter approach is prevalent in clinical oncology practice in India. Few studies, however, have examined patient preferences with respect to disclosure or the role of family members in the process. Structured interviews were conducted with patients (N=127) in the medical oncology clinic of a tertiary referral hospital in Bangalore, India. Patients ranged in age from 18-88 (M=52) and were mostly male (59%). Most patients (72%) wanted disclosure of the diagnosis cancer, a preference significantly associated with higher education and English proficiency. A majority wanted their families to be involved in the process. Patients who had wanted and not wanted disclosure differed with respect to their preferences regarding the particulars of disclosure (timing, approach, individuals involved, role of family members). Almost all patients wanted more information concerning their condition, about immediate medical issues such as treatments or side effects, rather than long-term or non-medical issues. While most cancer patients wanted disclosure of their disease, a smaller group wished that their cancer diagnosis had not been disclosed to them. Regardless of this difference in desire for disclosure, both groups sought similar specific information regarding their cancer and largely favoured involvement of close family in decision making. Additional studies evaluating the influence of factors such as disease stage or family relationships could help guide physicians when breaking bad news.

How doctors communicate the initial diagnosis of cancer matters: cancer disclosure and its relationship with Patients' hope and trust.

The study is to examine the relationships between perceived initial cancer disclosure communication with doctors, levels of hope, and levels of trust in doctors among cancer patients in China. A total number of 192 cancer inpatients in a cancer hospital in China were surveyed. Perceived disclosure strategies, levels of hope, levels of trust in their doctors, as well as the demographic information were obtained from the participants. In addition to age, patients who had higher levels of perceived emotional support from doctors, or higher levels of perceived personalized disclosure from doctors, or higher levels of perceived discussion of multiple treatment plans with doctors were more likely to have higher levels of trust in doctors. In addition to perceived health status, perceived emotional support from doctors significantly predicted participants' levels of hope. That is, patients who had higher higher levels of perceived doctors' emotional support were more likely to have higher levels of hope. Key disclosure person was a marginally significant variable, that is, patients who were mainly disclosed by family members might have higher levels of hope compared with patients who were mainly disclosed by doctors. When communicating with a cancer patient, doctors might not ignore the importance of emotional support during cancer diagnosis communication. Doctors might want to involve family and collaborate with family to find out ways of personalized disclosure. During the communication process, doctors could provide their patients with multiple treatment options and discuss the benefits and side effects of each treatment. Copyright © 2016 John Wiley & Sons, Ltd.

Disclosure of cancer information among Saudi cancer patients.

Cancer has been perceived as an incurable disease, and therefore, disclosure of cancer could harm patients. Therefore, the aim of this study was to explore Saudi cancer patients' views regarding disclosure of cancer information and the impact of gender, regions, and level of education on their desire to be disclosed of the diagnosis and prognosis. A face-to-face interview was conducted during patient's evaluation at our hospital prior to their knowledge of being diagnosed with cancer. Of 420 patients, 97.62% wanted to know all information about cancer and more than 96% wished to know the benefits and side effects of chemotherapy. None of the patients wanted to be treated without knowing their diagnosis, and almost all of them (94.76%) wanted to know about the prognosis. Patients from eastern region and male patients wanted to know their diagnosis more frequently than those from other regions and female patients (98.2% vs. 74.47%, P = 0.001; 97.90% vs. 92.17%, P = 0.008, respectively). Patients from Eastern Province, male patients, and educated patients wished to know their prognosis more frequently than those from other regions, female patients, and illiterate patients (94.98% vs. 68.79%, P = 0.001; 94.74% vs. 86.09%, P = 0.003; and 94.23% vs. 98.58%, P = 0.016, respectively). This study indicates that almost all the Saudi cancer patients wanted to know about their cancer diagnosis, prognosis, benefits and side effects of chemotherapy. Regions, gender, and level of education may affect patient's desire for cancer information.

Primary care physicians and oncologists are partners in cancer announcement.

The primary care physician (PCP) is central to cancer patients' management. Announcement of the diagnosis is a critical time for patients, even if they wish to be fully informed. The French National Cancer Plan, developed 10years ago, includes a diagnosis disclosure procedure (DDP) to be used by oncologists, which makes specific provision for a time of communication with PCPs. So, we asked PCPs about their role in cancer announcement since the launching of the DDP. A cross-sectional prospective study by postal questionnaire was sent to 500 PCPs in the largest region of France. It addressed (1) the characteristics of cancer disclosure, (2) PCPs' source of information of the diagnosis, (3) time of disclosure, (4) information exchange, and (5) the physicians' knowledge of the DDP. The response rate was 48%. In 20% of cases, oncologists delegated the announcement to PCPs. In 19% of cases, it was the patient or their family who informed the PCP of the diagnosis. We identified three announcement phases of cancer diagnosis in the physicians' clinical practice: pre-disclosure, disclosure, and repeat disclosure. In 57% of cases, PCPs lacked information on prognosis and in 60% on treatment. Regarding the DDP, nearly half of PCPs did not know the procedure itself or its content. PCPs announce the cancer diagnosis, even if they have not received the necessary information to do so. The DDP needs to be adapted for use in primary care practice.

Do Cancer Patients Prefer to Know the Diagnosis? A Descriptive Study Among Iranian Patients.

Background:There are important differences regarding cancer disclosure in various geographical populations (Europeans, Western Asia, Eastern Asia), depending on multiple sociocultural factors, and therefore, there is no standard protocol on this issue, especially in Iran.Objectives:To evaluate the amount of information that Iranian patients have and their preference for the disclosure of the cancer diagnosis.Patients and Methods:In this cross sectional descriptive research, patients admitted in the oncology departments of 3 referral medical centers, Imam Hussein, Shohada-e-Tajrish and Modarres, in Tehran, from March 2007 to April 2008, were questioned about their awareness and knowledge regarding their diagnosis. Two different structured questionnaires were designed for the people who know and who didn't know their diagnosis. For the former, the survey concerned their psychological reactions to their situations, whether they would prefer to know about their diagnosis and by whom they are preferred to be informed .For the latter, the questionnaire included their preference whether to know the diagnosis and their current emotional state. Descriptive statistics and chi square test was applied to analyze gathering Data, using SPSS version 14.Results:60.3% of the patients knew their diagnosis. Among the subjects who did not know their diagnosis, 88% preferred to be more informed about their diagnosis and 68% had some psychological reaction to their situations. Among the subjects who knew their diagnosis, 92.1 % preferred to know their diagnosis, 73.6% preferred to be informed directly by their physicians. Following the diagnostic disclosure, 81.5% reported that they had felt nervous, anxious and worried.Conclusions:The majority of Iranian patients with malignancy want to know the truth and they prefer to be informed directly by their doctors.

Breaking significant news: The experience of clinical nurse specialists in cancer and palliative care

PurposeThe aim of the research was to explore specialist cancer and palliative care nurses experience of delivering significant news to patients with advanced cancer. MethodA qualitative phenomenological research study was conducted to capture nurses' experiences with the aim of understanding how cancer and palliative care clinical nurse specialists work towards disclosure of advanced and terminal cancer. Data were collected through semi-structured interviews with 10 clinical nurse specialists working in one acute NHS trust. Clinical nurse specialists were recruited from the following specialities: lung cancer, breast cancer, gynaecological cancer, upper and lower gastrointestinal cancer and palliative care. ResultsFour themes emerged from the data: importance of relationships; perspective taking; ways to break significant news; feeling prepared and putting yourself forward. The findings revealed that highly experienced clinical nurse specialists (CNSs) felt confident in their skills in delivering significant news and they report using patient centred communication to build a trusting relationship so significant news was easier to share with patients. CNSs were aware of guidelines and protocols for breaking significant and bad news but reported that they used guidelines flexibly and it was their years of clinical experience that enabled them to be effective in disclosing significant news. Some areas of disclosure were found to be challenging in particular news of a terminal prognosis to patients who were of a younger age. ConclusionCNSs have become more directly involved in breaking significant news to those with advanced cancer by putting themselves forward and feeling confident in their skills.

Satisfaction with fertility- and sexuality-related information in young women with breast cancer--ELIPPSE40 cohort.

BackgroundYoung breast cancer survivors are often dissatisfied with the information provided on fertility and sexuality. Our aim was to discuss possible contributing factors and to propose strategies to increase patient satisfaction with such information.MethodsUsing the French National Health Insurance System database, we constituted the ELIPPSE40 regional cohort of 623 women, aged 18–40, diagnosed with breast cancer between 2005 and 2011. As of January 2014, 319 women had taken part in the 10-, 16-, 28 and 48-month telephone interviews. Satisfaction with the information provided about the potential impact of cancer and its treatment on fertility and sexuality was assessed at 48 months after diagnosis on 5-point Likert scales.ResultsFour years after diagnosis, only 53.0 and 42.6 % of women were satisfied with fertility- and sexuality-related information, respectively, without any significant change over the 2009–2014 period (P = 0.585 and P = 0.676 respectively). The two issues were moderately correlated (ρ = 0.60; P <0.001). General satisfaction with medical follow-up was the only common correlate. Irrespective of sociodemographic and medical characteristics, satisfaction with fertility-related information was greater among women with a family history of breast/ovarian cancer who had the opportunity to ask questions at the time of cancer disclosure. Satisfaction with sexuality-related information increased with the spontaneous provision of information by physicians at cancer disclosure.ConclusionsPromoting both patients’ question asking behavior and more systematic information could improve communication between caregivers and young breast cancer survivors and address distinct unmet needs regarding fertility- and sexuality- related information.Electronic supplementary materialThe online version of this article (doi:10.1186/s12885-015-1542-0) contains supplementary material, which is available to authorized users.

Social support, self-rated health, and lesbian, gay, bisexual, and transgender identity disclosure to cancer care providers.

To describe factors related to diagnosis, identity disclosure, and social support among lesbian, gay, bisexual, and transgender (LGBT) patients with cancer, and to explore associations between these factors and self-rated health. Cross-sectional self-report survey design using descriptive and exploratory multivariate statistical approaches. Online, Internet-based. 291 LGBT patients (89% Caucasian; 50% gay, 36% lesbian, 7% bisexual, 3% transgender) with mixed cancers. Participants completed a researcher-designed online survey assessing experiences of cancer diagnosis among LGBT patients at a single time point. Demographics, which provider(s) delivered the patients' cancer diagnoses, to whom patients had disclosed their LGBT identity, how they disclosed, who was on their social support team at the time of diagnosis, and current self-rated health. 79% of participants reported disclosing their identities to more than one cancer care provider. Participants most commonly introduced the topic of LGBT identity themselves, sometimes as a way to correct heterosexual assumptions (34%). Friends were the most common members of LGBT patients' support teams (79%). Four disclosure and support factors were consistently associated with better self-rated health. Disclosure of LGBT identity is a common experience in the context of cancer care, and disclosure and support factors are associated with better self-reported health among LGBT patients. Creating safe environments for LGBT patients to disclose could improve cancer care delivery to this underserved population. Nurses and other providers should acknowledge and include diverse support team members in LGBT patients' care.

67IN - What is the Place of Less Invasive Surgery in Lung Cancer?

ABSTRACT The dissemination of screening programs makes it possible to diagnose more early stage lung cancers than in the past. Screen-detected cancers are generally 400 days), some of which may be overdiagnosed. Most stage Ia cancers are not associated with lymph node infiltration, and a recent publication has identified factors predicting lymph node involvement: in the absence of such factors, radical lymphadenectomy may not be necessary, and for screen-detected stage Ia cancers, standard lobectomy plus radical lymphadenectomy may be overtreatment .For such cases it is important to reduce the invasiveness and extent of surgery, and also to explore and validate non-surgical treatments. The traditional open surgical approach (thoracotomy with rib spreading) to lobectomy and segmentectomy is being superseded by minimally invasive video-assisted thoracic surgery (VATS) even in non-academic centres. However, robotic surgery has fewer technical difficulties with shorter surgeon learning time than VATS: the magnified three-dimensional view, greater precision of instrument movements, hand tremor filtration and improved ergonomics overcome the limitations of VATS favouring its use even for more advanced cases. Sublobar resections are considered adequate procedures for patients at high risk of surgical complications (with commodities or age over 75 years), may also be adequate in patients with good performance status and peripheral lung cancer Disclosure: The author has declared no conflicts of interest.

Does the Approach of Disclosing More Detailed Information of Cancer for the Terminally Ill Patients Improve the Quality of Communication Involving Patients, Families, and Medical Professionals?

Effective and faithful communication between patients and medical professionals could improve patients' quality of life and is an essential and fundamental factor in cancer treatment. The purpose of this study was to examine whether disclosing more detailed information about disease progression toterminally ill patients could improve the quality of communication. This was a before/after study of 91 consecutive terminal cancer patients. Based on the previous studies, we categorized cancer disclosure into 4 groups: A;"non-disclosure", B;"disclosure of cancer diagnosis", C;"disclosureof life-threatening disease", and D;"disclosure of poor prognosis". We disclosed more detailed information based on the SPIKES protocol and compared the scores of 3 communication items of Support Team Assessment Schedule (Japanese version) measured between at admission and one-week after this approach. A, B, C and D groups included 8, 25, 40, and 18 cases, respectively. This approach to cancer disclosure was implemented in 37.5% of group A, 60% of group B, and 40% of group C. In group B, all 3 communications were significantly improved (2.40 ± 0.51 vs 1.53 ± 0.83, 1.93 ± 0.96 vs 1.00 ± 0.38, 2.13 ± 0.64 vs 1.13 ± 0.64; p = 0.0035, 0.0062, 0.0013). In group C, all 3 communications were significantly improved (1.25 ± 0.58 vs 0.81 ± 0.66, 1.13 ± 0.34 vs 0.69 ± 0.48, 1.31±0.60 vs 0.56 ± 0.63; p = 0.020, 0.0082, 0.0057). This study revealed that disclosing more detailed information of cancer for terminally ill cancer patients contributed to improving the quality of communication, irrespective of the stage of disclosure.

Life after cancer: How does public stigma increase psychological distress of childhood cancer survivors?

BackgroundPublic stigma is a major source of stress for cancer survivors. However, factors that buffer or exacerbate the negative effects of public stigma on psychological distress have not been elucidated. ObjectiveThis study examined how perceived public stigma affects psychological distress as mediated by cancer disclosure, internalized reactions to stigma, and social support availability. DesignCross-sectional study. SettingsThe study was conducted in South Korea. ParticipantsThe study sample was 223 adolescent and young adult survivors of childhood cancer diagnosed before the age of 19 and currently between 15 and 39 years old. MethodsPsychological distress was assessed using the Brief Symptom Inventory-18. Structural equation modeling was used with 1000 bootstrap samples. ResultsThe goodness of model fit was acceptable. Public stigma perceived by cancer survivors influenced psychological distress via cancer disclosure, internalized shame, and social support availability. Higher levels of perceived public stigma predicted higher levels of internalized shame and self-blame and lower levels of social support availability, which subsequently increased psychological distress. Higher levels of perceived public stigma predicted lower levels of disclosure about cancer history and experiences. Cancer disclosure indirectly ameliorated psychological distress by reducing internalized shame. ConclusionsThis study offers evidence that cognitive and social factors play important roles in mediating the effects of perceived public stigma on psychological distress in Korean cancer survivors. A greater understanding of factors that influence psychological distress may help psychosocial oncology service providers to identify childhood cancer survivors in need of psychosocial services and provide them with appropriate resources and interventions.

Breaking bad news-what patients want and what they get: evaluating the SPIKES protocol in Germany.

Evaluation of the SPIKES protocol, a recommended guideline for breaking bad news, is sparse, and information about patients' preferences for bad-news delivery in Germany is lacking. Being the first actual-theoretical comparison of a 'breaking bad news' guideline, the present study evaluates the recommended steps of the SPIKES protocol. Moreover, emotional consequences and quality of bad-news delivery are investigated. A total of 350 cancer patients answered the MABBAN (Marburg Breaking Bad News Scale), a questionnaire representing the six SPIKES subscales, asking for the procedure, perception and satisfaction of the first cancer disclosure and patient's assign to these items. Only 46.2% of the asked cancer patients are completely satisfied with how bad news had been broken to them. The overall quality is significantly related to the emotional state after receiving bad news (r = -0.261, P < 0.001). Patients' preferences differ highly significantly from the way bad news were delivered, and the resulting rang list of patients' preferences indicates that the SPIKES protocol do not fully meet the priorities of cancer patients in Germany. It could be postulated that the low satisfaction of patients observed in this study reflects the highly significant difference between patients' preferences and bad-news delivery. Therefore, some adjunctions to the SPIKES protocol should be considered, including a frequent reassurance of listeners' understanding, the perpetual possibility to ask question, respect for prearrangement needs and the conception of bad-news delivery in a two-step procedure.

Survey of the influencing factors of attitude of gynecologic medical staff on the disease informing for patients with malignancy tumor

Objective To investigate the attitude of gynecological medical staff on cancer disease informing and its influencing factors,so as to find suitable gynecologic cancer disclosure strategy for clinic.Methods Totals of 61 cases of gynecologic medical personnel received the related to cancer disclosure attitudes survey,and its influencing factors were analyzed.Results Gynecological medical staff had affirmative attitude for cancer informing,gynecological medical staff agreed with the real illness should tell the patient himself with the average score (4.08 ± 1.11).Education degree was found to be the influencing factor of the attitude of gynecological medical staff on disease informing (x2 =11.46,P ＜ 0.05).Conclusions Gynecologic medical staff have affirmative attitude for disease informing,and believe it can satisfy the patients' right of needing,and effectively preventing medical disputes. Key words: Gynecologic cancer; Informing attitude; Gynecologic medical staff; Influence factors

“The only way I know how to live is to work”: A qualitative study of work following treatment for prostate cancer.

For many survivors of prostate cancer, returning to work posttreatment is a realistic goal. However, little research to date has explored work among prostate cancer survivors. The focus of this study was to explore the meaning of work among prostate cancer survivors and to describe the linkages between masculinity and work following prostate cancer treatment. Fifty prostate cancer survivors who were in paid employment prior to their diagnosis completed a semistructured interview following completion of their treatment and of these, 41 also completed a 12-month follow-up interview. Framework analysis of the 91 transcripts was undertaken. The majority of the men had returned to work at the 12-month interview. Four themes were identified, and these were labeled "Work and self-identity," "Work-related implications of treatment side effects," "Disclosure of cancer," and "Perceptions of future as a cancer survivor." A degree of embarrassment and concern about residual side effects and whether these would present a challenge within the workplace was apparent among our sample and was compounded by a reluctance to disclose these. The descriptions provided by the men in this study reveal that the experience of prostate cancer can lead to challenges for both social and work-related roles. The influence of prostate cancer on men's reports of masculinity was variable, and recognition of these differences is required. In addition, some survivors of prostate cancer may require specific interventions aimed at helping them to manage disclosure of their illness, particularly within a work environment.

1192PD - Lace-Bio Pooled Analysis of the Prognostic and Predictive Value of TP53 Mutations in Completely Resected Non Small Cell Lung Cancer (NSCLC)

ABSTRACT Background Mutations in the Tumour Suppressor Gene TP53 occur in about 50% of Stage II-III NSCLC. However, prognostic and predictive value of survival after adjuvant therapy not defined. We report here on the pooled analysis of 4 randomized trials of platinum-based Adjuvant ChemoTherapy (ACT) or observation. Methods Trials included IALT, JBR10, CALGB-9633 and ANITA. Mutations in exons 5-8 of TP53 (encompassing hotspots and over 90% of known mutations) were detected by PCR/sequencing in DNA extracted from formalin-fixed paraffin-embedded NSCLC. Mutations were classified into 3 structure/function groups: non-missense; missense outside DNA Binding Notifs (missense non-DBM); missense DBM. Main endpoint was overall survival (OS). Hazard ratio (HR) and 95% confidence interval (CI) were estimated with a Cox model stratified on trial and adjusted on gender, age and clinico-pathological variables. Results 1209 NSCLC patients (pts) (5.5 years median follow-up) were analysed. Mutations were detected in 434 pts (36%; IALT: 42%; JBR10: 28%; CALGB-9633: 39%; ANITA: 30%). Mutant TP53 had a borderline significant prognostic effect (HR for OS, mutation vs. wild-type (WT): 1.19; CI [1.00-1.41]; p = 0.05). Missense non-DBM mutations, likely to alter p53 protein structure, had a marginally worse prognostic effect (HR for OS, missense non-DBM vs. WT: 1.38; CI [1.08-1.75]), but effects in the 3 function groups were not significantly different (p = 0.23). Among pts with WT TP53, OS was better in the ACT group (HR for OS, ACT vs. no ACT: 0.77; CI [0.62-0.96]; p = 0.02), whereas ACT had no effect among pts with mutation. Conversely, in the ACT group, OS was significantly shorter in pts with TP53 mutation than in WT pts (HR for OS, Mutant vs. WT TP53: 1.39; CI [1.09-1.77]; p = 0.008), whereas TP53 had no prognostic effect in the control group. The ACT effect in the mutated and WT groups and the prognostic effect in the ACT and control groups were not different (interaction test p = 0.07). Conclusion TP53 mutation status had a borderline prognostic effect and was not predictive of adjuvant chemotherapy effect on OS in NSCLC. Supported by French Ligue against Cancer (LNCC) and by unrestricted grant from Sanofi Aventis. XM was supported by a fellowship from International Agency for Research on Cancer Disclosure All authors have declared no conflicts of interest.

The Evaluation of the Relationship Between the Level of Disclosure of Cancer in Terminally Ill Patients With Cancer and the Quality of Terminal Care in These Patients and Their Families Using the Support Team Assessment Schedule

To examine the relationship between informing patients of cancer and the quality of terminal care. This was a study of 87 consecutive terminally ill cancer patients who died during the last 27-month period. Notification of cancer was classified into 4 groups (A, B, C, and D, respectively): "nondisclosure," "disclosure of cancer diagnosis," "disclosure of life threatening," and "disclosure of poor prognosis." We evaluated the quality of palliative care using Support Team Assessment Schedule-Japanese (STAS-J). A, B, C, and D groups included 8, 22, 37, and 20 cases, respectively. Regarding physical symptoms, no marked difference was noted. Anxiety was significantly reduced, and the recognition of disease conditions and the level of communication were significantly higher in the groups that received specific information (P < .001). Informing patients of more specific information will increase the quality of terminal care.

Cancer disclosure: Experiences of Iranian cancer patients

This study explored Iranian patients' experiences of cancer disclosure, paying particular attention to the ways of disclosure. Twenty cancer patients were invited to participate in this qualitative inquiry by research staff in the clinical setting. In-depth, semistructured interview data were analyzed through content analysis. The rigor of the study was established by principles of credibility, transferability, dependability, and confirmability. Four themes emerged: the atmosphere of non-disclosure, eventual disclosure, distress in knowing, and the desire for information. Non-disclosure was the norm for participants, and all individuals involved made efforts to maintain an atmosphere of non-disclosure. While a select few were informed of their diagnosis by a physician or another patient, the majority eventually became aware of their diagnosis indirectly by different ways. All participants experienced distress after disclosure. The participants wanted basic information about their prognosis and treatments from their treating physicians, but did not receive this information, and encountered difficulty accessing information elsewhere. These challenges highlight the need for changes in current medical practice in Iran, as well as patient and healthcare provider education.

The taboo of cancer: the experiences of cancer disclosure by Iranian patients, their family members and physicians

The objective of this study is to describe the experiences of cancer disclosure by Iranian cancer patients, their family members and physicians. Twenty cancer patients, ten family members and eight physicians participated in this study. Data were collected via semi-structured, in-depth interviews and analyzed using qualitative content analysis. Three categories were identified: cancer avoidance, a climate of non-disclosure and mutual concern. The findings demonstrated that cancer is a taboo subject and the word cancer, as well as other indicative terms, was rarely used in daily communication. A climate of non-disclosure predominated because patients were the last to know their diagnosis, they were unaware of their prognosis, and family members and physicians employed strategies to conceal this information. The mutual concern of patients, family members and physicians was the main reason that cancer was not discussed. Cancer is a taboo subject in Iran that is maintained and reinforced primarily because of the mutual concern of patients, family members and physicians. The first step to address this taboo and inform cancer patients of their diagnosis would be to understand and help mitigate the individual, family and social consequences of disclosure.