Midwives' knowledge and practice of Respectful Maternity Care: a survey from Iran.

BACKGROUND: In the past decade, countries worldwide aimed to evaluate the quality of childbirth care and reduce the high rates of disrespect and abuse during childbirth. Few studies have attempted to identify providers' characteristics associated with respectful maternity care quantitatively. This study aims to evaluate midwives' knowledge and practice of respectful maternity care (RMC). METHODS: A cross-sectional study was carried out in 15 teaching and non-teaching hospitals in Tehran, Iran. The hospitals were selected by using a cluster sampling design. Midwives' Knowledge and Practice of Respectful Maternity Care scale (MKP-RMC) was administered to 250 midwives working in maternity units at study hospitals. The data were analysed by statistics package for social science (SPSS, version 21.0, Chicago, IL). RESULTS: Findings demonstrated that the mean score for knowledge and practice of midwives were 20.96 ± 3.54 and 101.64 ± 11.49, respectively. Also, in both knowledge and practice scales, midwives had the highest score in "providing safe care' domain and the lowest score in "preventing mistreatment" domain. CONCLUSION: Our findings showed that for Iranian midwives, providing care to preserve mothers' and their babies' wellbeing is more critical than preventing maternal mistreatment, resulting from the importance of the care provision in the Iranian healthcare system. Promoting midwives' knowledge and practice through developing a tailored educational program to prevent mistreatment and providing emotional support alongside physical care is recommended.

Development of the Multiple Myeloma Symptom and Impact Questionnaire: A New Patient-Reported Outcome Instrument to Assess Symptom and Impacts in Patients With Multiple Myeloma.

OBJECTIVES: This study aimed to develop and assess the content validity of a patient-reported outcomes (PROs) instrument to measure symptoms and impacts experienced by patients with active multiple myeloma (MM). METHODS: The PRO instrument was developed using an iterative, mixed-methods approach. The list of concepts was generated based on a review of existing evidence (qualitative studies and literature) and post hoc psychometric evaluations of 2 PRO instruments in 3 clinical trials. A total of 30 adult patients with MM from the United States participated in hybrid concept elicitation/cognitive debriefing interviews to validate the content validity of the newly developed PRO instrument. Translatability assessment was completed in 8 languages. RESULTS: The item generation process resulted in 17 symptom and 9 impact concepts for evaluation. The concept elicitation interviews and analysis were based on the first 25 participants; evidence of saturation was observed. The cognitive debriefing interviews and analysis were based on the last 23 participants across 4 waves of interviews. On the basis patient feedback, 10 items were removed, and 1 item was added to the PRO instrument. The translatability assessment resulted in 1 minor revision. The multiple myeloma symptom and impact questionnaire (MySIm-Q) includes 11 symptom and 6 impact concepts, organized within 8 hypothesized subdomains, with each concept measured using a 5-point verbal rating scale and a 7-day recall period. CONCLUSIONS: The MySIm-Q instrument was developed using rigorous and mixed methodology and with direct input from patients who received a diagnosis of MM. The MySIm-Q has good content validity and is culturally relevant for use in global clinical trials.

Health State Utilities of Patients with Heart Failure: A Systematic Literature Review.

BACKGROUND AND OBJECTIVES: New treatments and interventions are in development to address clinical needs in heart failure. To support decision making on reimbursement, cost-effectiveness analyses are frequently required. A systematic literature review was conducted to identify and summarize heart failure utility values for use in economic evaluations. METHODS: Databases were searched for articles published until June 2019 that reported health utility values for patients with heart failure. Publications were reviewed with specific attention to study design; reported values were categorized according to the health states, 'chronic heart failure', 'hospitalized', and 'other acute heart failure'. Interquartile limits (25th percentile 'Q1', 75th percentile 'Q3') were calculated for health states and heart failure subgroups where there were sufficient data. RESULTS: The systematic literature review identified 161 publications based on data from 142 studies. Utility values for chronic heart failure were reported by 128 publications; 39 publications published values for hospitalized and three for other acute heart failure. There was substantial heterogeneity in the specifics of the study populations, methods of elicitation, and summary statistics, which is reflected in the wide range of utility values reported. EQ-5D was the most used instrument; the interquartile limit for mean EQ-5D values for chronic heart failure was 0.64-0.72. CONCLUSIONS: There is a wealth of published utility values for heart failure to support economic evaluations. Data are heterogenous owing to specificities of the study population and methodology of utility value elicitation and analysis. Choice of value(s) to support economic models must be carefully justified to ensure a robust economic analysis.

Development and psychometric properties of Midwives' Knowledge and Practice Scale on Respectful Maternity Care (MKP-RMC).

OBJECTIVE: To develop a scale for evaluating knowledge and practice of midwives on Respectful Maternity Care (RMC). METHODS: An exploratory sequential mixed method study was conducted from January 2018 to July 2019 in two non-teaching public hospitals in Tehran, Iran. In the first part of the study, a literature review and qualitative study were carried out in order to develop the preliminary item pool. Then face, content and construct validity and reliability (internal consistency and test-retest) were assessed. RESULTS: The MKP-RMC scale has 23-item in knowledge and 23-item in practice section that loaded in three factors: Giving emotional support, providing safe care and preventing mistreatment. Exploratory factor analysis accounted for 43.47% and 58.62% of observed variance in knowledge and practice sections, respectively. The internal consistency and internal correlation coefficient of both section of MKP-RMC indicated acceptable reliability. CONCLUSION: The MKP-RMC is a valid and reliable tool for measuring midwives' knowledge and practice of respectful care during labor and childbirth. The MKP-RMC could be used in maternity services to evaluate and improve quality of childbirth care through development of educational interventions for effective behavioral change. Confirmation of validity and reliability of translated version of the scale in other maternity care providers and different contexts is recommended.

Impact of communication on first treatment decisions in people with relapsing-remitting multiple sclerosis.

OBJECTIVE: Disease-Modifying Treatments (DMTs) have contributed to a new clinical landscape for people with relapsing-remitting multiple sclerosis (pwRRMS). A challenge for services is how to support DMT decisions with changing clinical evidence, and differing treatment goals. This article investigates how pwRRMS weigh up the pros and cons of DMTs by examining how communication at the point of diagnosis is related to DMT decisions. METHODS: 30 semi-structured interviews with pwRRMS in England were conducted using a theoretical purposive sampling strategy and analysed using the thematic approach to answer: How does communication about RRMS during diagnosis influence decisions about when and which DMT to choose? RESULTS: Three meta-themes were identified: a) communication context; b) delayed communication and hope for people with "non-active" RRMS at diagnosis; c) people with "active" RRMS at diagnosis: Conflated, generic, selective and simplified information CONCLUSION: At the time of diagnosis, patient-physician interactions are characterised by emotions and information complexity. Clinical, social and psychological DMT filtering mechanisms are activated during first decisions. Personalised evidence is needed to make informed decisions. PRACTICE IMPLICATIONS: Patient decision aids should consider first and consecutive decisions and should not encourage a false sense of large choices that could add to decision anxiety.

Midwives' perspectives of respectful maternity care during childbirth: A qualitative study.

The adoption of respectful maternity care during labor and birth is a complex process which needs both scientific and interpersonal skills of providers. In this regard, identifying the potential barriers and applying effective strategies for implementing respectful maternity care are essential. This study aimed to explore the perceptions of Iranian midwives regarding respectful maternity care during labor and childbirth. This was a qualitative study which was conducted from September-December 2018 in two non-teaching public hospitals in Tehran, Iran. Twenty-four semi-structured interviews were conducted with midwives, who had more than one year work experience in labor and childbirth units, through a purposive sampling method. A content analysis approach was used to analyze the data and identify themes. Three themes were extracted including "showing empathy", "women-centered care" and "protecting rights". Showing empathy reflects that "establishing a friendly relationship" and "being with women". Women-centered care encompassed "keeping women safe" and "participating in decision making". Protecting rights reflected a need for "safeguarding dignity" as well as "giving equal care" and "preparing appropriate environment". Iranian midwives considered respectful maternity care a broader concept than just preventing mistreatment. Providing supportive care through friendly interaction with women was the first step for providing respectful maternity care. Respectful care is also promoted by providing safe care, implementing evidence-based care and involving women in their care as well as by providing an appropriate environment for women, families and caregivers.

A questionnaire to assess women's perception of respectful maternity care (WP-RMC): Development and psychometric properties.

OBJECTIVE: To develop and assess the psychometric properties of Women's Perspection-Respectful Maternity Care (WP-RMC) Questionnaire. DESIGN: An exploratory sequential mixed method study was carried out from March to August 2018 in Tehran, Iran. The questionaire items were generated from the literature review and qualitatatve study. The revised items of questionnaire were assessed for validity via testing for face, content and construct validity and relibility. SETTING: Public and semi-public hospitals, and public primary health care centers. PARTICIPANTS: Postpartum women who had a low risk pregnancy, normal vaginal childbirth and gave birth to a healthy baby with normal birth weight. FINDINGS: The WP-RMC has 19 items that loaded in three factors: Providing comfort, Participatory care and Mistreatment. Exploratory factor analysis jointly accounted for 53.05% of observed variance. The CVI was 0.97 and the CVR in all items was more than 0.79. Cronbach's alpha for all items was 0.91 and ICC was 0.9. KEY CONCLUSIONS: 'The WP-RMCquestionnaire is a valid and reliable tool to measure women's experiences of Respectful Maternity Care. This questionnaire could assess subjective features of quality of childbirth care. It can be used in maternity services trying to evaluate and improve women's care experiences during labour and childbirth. The use of the translation of WP-RMC questionnaire in other countries is recommended.

Understanding treatment decisions from the perspective of people with relapsing remitting multiple Sclerosis: A critical interpretive synthesis.

BACKGROUND: Multiple Sclerosis (MS) is a chronic inflammatory demyelinating disorder of the central nervous system that mainly affects young adults. While there is no cure for MS, disease modifying treatments (DMTs) reduce the relapse rate and partial accrual of disability. More effective DMTs may have higher risks including life-threatening infections or secondary autoimmunity. The complexity and novelty of available treatments cause challenges for clinicians when prescribing treatments and for people with MS (PwMS) when deciding what trade-offs they are willing and ready to make. OBJECTIVE: To explore the experience of people with relapsing remitting MS (PwRRMS) and their perspectives in choosing treatments. METHODS: Critical interpretive synthesis was employed to review and synthesis the published literature. Eighty-three publications were selected in a multi-step systematic process. RESULTS: Findings are presented in four interrelated areas: the influence of the clinical evidence-base in decision making; the meaning of DMT efficacy for PwRRMS; the influence of models of decision-making and information acquisition practices in PwRRMS; and the importance of psychosocial dimensions in DMT decision making. Synthesis of the findings revealed that alongside medical and individual reasoning, contextual circumstances play an important role in making treatment decisions. CONCLUSION: This review identifies and explains the importance of diverse contextual circumstances (clinical, social, psychological) that are important for PwRRMS when making treatment decisions. The findings demonstrate the importance of eliciting, understanding and addressing such contextual factors.

Women's experiences of routine care during labour and childbirth and the influence of medicalisation: A qualitative study from Iran.

OBJECTIVE: to understand women's experiences of routine care during labor and childbirth in a medicalised context. DESIGN: twenty-six in-depth interviews were conducted during the late postpartum period and thematic analysis was applied. SETTING: four public hospitals in Tehran with a high rate of births, providing services to low and middle income families. PARTICIPANTS: women who had a low risk pregnancies and gave a birth to a healthy infant by normal vaginal delivery. FINDINGS: two main themes emerged: 'An ethos of medicalisation' which indicates that women's perception of childbirth was influenced by the medicalised context of childbirth. And 'The reality of fostered medicalisation' which illustrates the process by which interventions during labor affected women's pathway through childbirth, and how the medicalisation resulted in a birth experience which often included a preference for Caesarean Section rather than vaginal birth with multiple interventions. IMPLICATIONS FOR PRACTICE: contextual factors such as legal issues, state's regulations and the organisational framework of maternity services foster medicalised childbirth in Tehran public hospitals. These factors influence the quality of care and should be considered in any intervention for change. The aim should be a high quality birth experience with minimal interventions during normal vaginal delivery. A midwifery model of care combining scientific evidence with empathy may address this need for change.

Asking the right questions to get the right answers: using cognitive interviews to review the acceptability, comprehension and clinical meaningfulness of patient self-report adverse event items in oncology patients.

BACKGROUND: Standardized reporting of treatment-related adverse events (AE) is essential in clinical trials, usually achieved by using the National Cancer Institute (NCI) Common Terminology Criteria for Adverse Events (CTCAE) reported by clinicians. Patient-reported adverse events (PRAE) may add value to clinician assessments, providing patient perspective on subjective toxicity. We developed an online patient symptom report and self-management system for real-time reporting and managing AE during cancer treatment integrated with electronic patient records (eRAPID). As part of this program we developed a patient version of the CTCAE (version 4.0), rephrasing terminology into a self-report format. We explored patient understanding of these items via cognitive interviews. MATERIAL AND METHOD: Sixty patients (33 female, 27 male) undergoing treatment were purposively sampled by age, gender and tumor group (median age 61.5, range 35-84, 12 breast, 12 gynecological, 13 colorectal, 12 lung and 11 renal). Twenty-one PRAE items were completed on a touch-screen computer. Subsequent audio-recorded cognitive interviews and thematic analysis explored patients' comprehension of items via verbal probing techniques during three interview rounds (n = 20 patients/round). RESULTS: In total 33 item amendments were made; 29% related to question comprehension, 68% response option and 3% order effects. These amendments to phrasing and language improved patient understanding but maintained CTCAE grading and key medical information. Changes were endorsed by members of a patient advisory group (N = 11). CONCLUSION: Item adaptations resulted in a bank of consistently interpreted self-report AE items for use in future research program. In-depth analysis of items through cognitive interviews is an important step towards developing an internationally valid system for PRAE, thus improving patient safety and experiences during cancer treatment.

Barriers to early presentation of self-discovered breast cancer in Singapore and Malaysia: a qualitative multicentre study.

OBJECTIVE: To explore and compare barriers to early presentation of self-discovered breast cancer in Singapore and Malaysia. DESIGN: A qualitative interview study with thematic analysis of transcripts. PARTICIPANTS: 67 patients with self-discovered breast symptoms were included in the analysis. Of these, 36% were of Malay ethnicity, 39% were Chinese and 25% Indian, with an average age of 58 years (range 24-82 years). The number of women diagnosed at early stages of cancer almost equalled those at advanced stages. Approximately three-quarters presented with a painless lump, one-quarter experienced a painful lump and 10% had atypical symptoms. SETTING: University hospital setting in Singapore and Malaysia. RESULTS: Patients revealed barriers to early presentation not previously reported: the poor quality of online website information about breast symptoms, financial issues and the negative influence of relatives in both countries, while perceived poor quality of care and services in state-run hospitals and misdiagnosis by healthcare professionals were reported in Malaysia. The pattern of presentation by ethnicity remained unchanged where more Malay delayed help-seeking and had more advanced cancer compared to Chinese and Indian patients. CONCLUSIONS: There are few differences in the pattern of presentation and in the reported barriers to seek medical care after symptom discovery between Singapore and Malaysia despite their differing economic status. Strategies to reduce delayed presentation are: a need to improve knowledge of disease, symptoms and causes, quality of care and services, and quality of online information; and addressing fear of diagnosis, treatment and hospitalisation, with more effort focused on the Malay ethnic group. Training is needed to avoid missed diagnoses and other factors contributing to delay among health professionals.

Patient attitudes towards prenatal diagnostic testing for inherited retinal disease.

OBJECTIVE: To explore factors that influence decision-making in relation to prenatal diagnostic testing (PDT) for inherited retinal disease (IRD). METHOD: Semi-structured interviews were conducted with 50 adults with IRD, selected from a larger sample to provide a diversity of backgrounds and opinions on genetic testing. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Mostly participants supported PDT, believing that it would provide information to help them prepare for and plan the future care of the child and the potential for early access to emerging therapies. Opposition to PDT stemmed from its use to justify termination of pregnancy, with participants feeling that it was not justified as they retained a good quality of life despite their visual impairment. Participants raised concerns about the risk of PDT and the accuracy of the results. However, most suggested that it should be available as an option for others, but for specific reasons and not as a part of routine care. CONCLUSION: The variation in attitudes towards PDT and uncertainty about the risk and accuracy of results suggest that individuals at risk of having a child with IRD should have access to genetic counselling to support decision making.

Willingness to pay for genetic testing for inherited retinal disease.

This paper investigates the willingness of adults with inherited retinal disease to undergo and pay for diagnostic genetic testing in three hypothetical scenarios and to explore the factors that influence decision making. Fifty patients were presented with three scenarios whereby genetic testing provided increasing information: confirming the diagnosis and inheritance pattern alone, providing additional information on future visual function, and identifying in addition a new treatment which could stabilise their condition. Willingness to pay (WTP) was elicited using an iterative bidding game. Regression analysis was used to investigate the probability of agreeing to and paying for testing. Qualitative data were also reviewed to provide a comprehensive understanding of WTP and decision making. The majority of participants agreed to undergo genetic testing in each of the three scenarios. Scenario 2 was the least acceptable with 78% of participants agreeing to genetic testing. The probability of agreeing to genetic testing decreased with age. Between 72 and 96% of participants reported a WTP for genetic testing. Average WTP was £539, £1516, and £6895 for scenarios 1, 2, and 3 respectively. Older participants and participants with higher incomes were willing to pay more for testing. Qualitative data provided additional detail about the rationale behind participants' decisions. The study suggests that patients with inherited retinal disease were willing to undergo and to pay for diagnostic genetic testing, suggesting that they valued the information it may provide. However, several patients preferred not to receive prognostic information and were less willing to pay for genetic testing that yielded such detail.

The invisible issue of organ laundering.

Global institutions, although suggesting measures to deter organ trafficking, reiterate the lack of official statistics about this illegal trade. In this article, we explore the reasons why organ trafficking remains unreported. We argue that the complex factors that perpetuate invisibility facilitate trafficked organs being "laundered" in the health care systems of the purchaser's country, hindering accurate estimation of the problem. The factors are as follows: (a) issues of globalization, jurisdiction, and law enforcement; (b) the power of health care professionals; (c) the reimbursement of transplantation costs abroad by insurers; (d) ambivalence of the victim status of the sellers; and (e) the buyers as vulnerable offenders.

Incentivised case finding for depression in patients with chronic heart disease and diabetes in primary care: an ethnographic study.

OBJECTIVE: To examine the process of case finding for depression in people with diabetes and coronary heart disease within the context of a pay-for-performance scheme. DESIGN: Ethnographic study drawing on observations of practice routines and consultations, debriefing interviews with staff and patients and review of patient records. SETTING: General practices in Leeds, UK. PARTICIPANTS: 12 purposively sampled practices with a total of 119 staff; 63 consultation observations and 57 patient interviews. MAIN OUTCOME MEASURE: Audio recorded consultations and interviews with patients and healthcare professionals along with observation field notes were thematically analysed. We assessed outcomes of case finding from patient records. RESULTS: Case finding exacerbated the discordance between patient and professional agendas, the latter already dominated by the tightly structured and time-limited nature of chronic illness reviews. Professional beliefs and abilities affected how case finding was undertaken; there was uncertainty about how to ask the questions, particularly among nursing staff. Professionals were often wary of opening an emotional 'can of worms'. Subsequently, patient responses potentially suggesting emotional problems could be prematurely shut down by professionals. Patients did not understand why they were asked questions about depression. This sometimes led to defensive or even defiant answers to case finding. Follow-up of patients highlighted inconsistent systems and lines of communication for dealing with positive results on case finding. CONCLUSIONS: Case finding does not fit naturally within consultations; both professional and patient reactions somewhat subverted the process recommended by national guidance. Quality improvement strategies will need to take account of our results in two ways. First, despite their apparent simplicity, the case finding questions are not consultation-friendly and acceptable alternative ways to raise the issue of depression need to be supported. Second, case finding needs to operate within structured pathways which can be accommodated within available systems and resources.

Current understanding of genetics and genetic testing and information needs and preferences of adults with inherited retinal disease.

Advances in sequencing technology and the movement of genetic testing into all areas of medicine will increase opportunities for molecular confirmation of a clinical diagnosis. For health-care professionals without formal genetics training, there is a need to know what patients understand about genetics and genetic testing and their information needs and preferences for the disclosure of genetic testing results. These topics were explored during face-to-face interviews with 50 adults with inherited retinal disease, selected in order to provide a diversity of opinions. Participants had variable understanding of genetics and genetic testing, including basic concepts such as inheritance patterns and the risk to dependents, and many did not understand the term 'genetic counselling'. Most were keen for extra information on the risk to others, the process for genetic testing and how to share the information with other family members. Participants were divided as to whether genetic testing should be offered at the time of the initial diagnosis or later. Many would prefer the results to be given by face-to-face consultation, supplemented by further information in a format accessible to those with visual impairment. Health-care professionals and either leaflets or websites of trusted agencies were the preferred sources of information. Permission should be sought for disclosure of genetic information to other family members. The information needs of many patients with inherited retinal disease appear to be unmet. An understanding of their information needs and preferences is required to help health-care professionals provide optimal services that meet patient expectations.

"To perpetuate blindness!": attitudes of UK patients with inherited retinal disease towards genetic testing.

Availability and accuracy of genetic testing in ophthalmology has increased yet the benefits are unclear especially for those conditions where cure or treatments are limited. To explore attitudes to and patients' understanding of possible advantages and disadvantages of genetic testing for inherited retinal disease, we undertook focus groups in three West Yorkshire towns in the UK. Most of our participants had retinitis pigmentosa and one of the focus groups consisted of participants from (British) Asian ethnic background. Here, we report only those attitudes which were common in all three focus groups. Some of the attitudes have already been reported in the literature. Novel findings include attitudes held towards informed choice and life planning, particularly among more severely affected participants. For example, participants appreciated that genetic testing increases informed choice and enables life planning, but these understandings tended to be in a specific sense: informed choice whether to have children and family planning in order to prevent illness recurrence. We conclude that even though these patients are not a homogeneous group, their attitudes tend to be underpinned by deep anxiety of passing their visual impairment onto their children. In this respect, they differ importantly from a small minority of the deaf who would prefer to have children with hearing loss, and from the more general population who do not believe that blindness is a "severe" enough disability to warrant avoiding having children.

Factors influencing late presentation for breast cancer in the middle East: a systematic review.

BACKGROUND: Breast cancer is the most common female type of cancer in the Middle East. A review of the evidence about the reasons people did not seek medical care has not been conducted for this region. METHODS: A systematic review was undertaken to identify the explanatory factors and assess the strength of the evidence leading to late or delayed presentation for breast cancer in the Middle East. RESULTS: Electronic databases and websites were searched from 1970 to March 2011 and yielded approximately 1801 studies and of which, only 10 were relevant. Of these, 6 studies met the inclusion criteria and they were either Egyptian or Iranian. All studies employed quantitative methods to investigate late and delayed presentation for breast cancer, and most defined the term delay in number of weeks or months. Older age and lower educational level were found to have strong effects in explaining late presentation. Having no family history of breast cancer was found to have moderately effect on breast cancer late presentation. CONCLUSION: Our review revealed the need to conduct research in the Middle East and our findings indicated the importance of considering older age, low educational level and a family history of cancer when planning and developing health strategies to reduce the burden of late presentation.

Cultures, subcultures and late presentation with breast cancer.

BACKGROUND: There has been an increased recognition of the importance of socio-cultural factors affecting late presentation in breast cancer. Socio-culturally mediated symbolic meanings, attached to " breasts" might importantly affect understandings of breast cancer in connection with late presentation. OBJECTIVE: To explore symbolic meanings of " breasts" which might affect late presentation, as observed by the practitioners of complementary, alternative and religious (CAM) healing who worked with women with breast cancer in the Boston area, USA. METHOD: We conducted semi-structured interviews with 46 CAM practitioners who worked with approximately 70 CAM modalities. The interviews were entered into the database and analysed using thematic approach. RESULTS: The CAM practitioners observed that late presentation is related to two symbolic meanings of " breasts". Firstly, " breasts" are a symbol of maternity and consequently some women delayed seeking medical help because such understanding affected their perceived capacity to take care of their families. Secondly, among White American women " breasts" are related to the culturally highly relevant concept of " beauty", but among African American women " beauty" is equated with " health". Such understandings lead to very different reasons for late presentation, different illness experiences and require different psycho-social intervention to support women. DISCUSSION AND CONCLUSION: In planning and designing effective health promotion strategies and appropriate supportive care strategies for women coming from different cultural and sub-cultural backgrounds it is important to carefully examine concepts affecting late presentation in all their different social and (sub-)cultural settings.

Understanding distress and distressing experiences in patients living with multiple myeloma: an exploratory study.

PURPOSE: The aim of this study was to gain greater insight into the symptoms and distressing experiences of patients living with myeloma. METHODS: A qualitative interview evaluation of distressing experiences in patients with myeloma, following a grounded theory approach, was used. Sampling was purposive, with particular attention to diversity in age and ethnic minority patients. RESULTS: Fifteen patients were interviewed. Key findings suggest that (a) many individual symptoms were not considered as particularly distressing beyond the acute phase of the disease and its treatment, except when they occurred in a context that was threatening to the patients; (b) visible symptoms that showed to other people one's disease condition may be particularly distressing, and (c) the conditioning phase of the transplant was particularly stressful and a violation to one's body, described by some patients as 'being somehow dead'. CONCLUSION: The personal meaning ascribed to symptoms and treatments as well as the context in which they occur are important determinants of distress. Such patient meanings and contexts should be explored by health professionals in-depth, in order to prepare patients for the experience and support them more fully.