How do people with neurofibromatosis type 1 (the forgotten victims) live? A grounded theory study.

BACKGROUND: Neurofibromatosis type I (NF1) is a rare genetic disorder, associated with some physical symptoms including spots and tiny bumps on the skin, and internal organ involvement. People suffering from neurofibromatosis face various challenges in their daily lives. However, there is little understanding on how patients deal with neurofibromatosis. This study aimed to investigate the life challenges of patients with NF1. METHODS: This qualitative study was performed by implementing a grounded theory with the cooperation of the Society for Neurofibromatosis Patients over the course of 15 months in 2019 across 4 provinces in Iran. Twenty-four patients with NF1 were interviewed. An analysis was performed using the constant comparative method. FINDINGS: The results of the analyses indicated that the major concern of the NF1 patients was feelings of failure and falling behind in life. In the face of failure in life in such a context, patients used the main strategy of "unsuccessful struggle to escape" the disease and its complications, which was represented itself in the forms of 'hopelessness and impatience', 'suicidal thoughts and unsuccessful suicide attempts', 'isolation and seclusion', 'expressing complaints and grievances to God', 'hiding the disease' and 'hopelessness and refusing to receive care'. The implementation of such strategies helped patients reduce tension and achieve a temporary, though vulnerable and fragile, sense of relief and peace. CONCLUSION: Given an unfavourable life condition, NF1 patients turned to a harmful passive strategy in the face of the challenges posed by the disease. PATIENT OR PUBLIC CONTRIBUTION: Public contributors were active partners throughout, and co-authored the paper.

Study of the Demographic and Clinical Profile in a Neurocutaneous Rare Disease: A Cross-Sectional Study.

OBJECTIVE: Neurofibromatosis is one of the most common dominantly inherited genetic disorders. This study aimed to study the demographic and clinical profile of neurofibromatosis patients. METHODS: This study is cross-sectional conducted in 2020 on the population of patients with neurofibromatosis. Patients who are members of the Neurofibromatosis Association answered the online demographic and clinical information questionnaire. RESULTS: 446 patients with neurofibromatosis participated in this study with a mean age of 33.39 plus or minus 12.87 years. 297 patients (66.6%) were women and 378 (84.8%) patients had type 1 neurofibromatosis. The disease visibility was reported to be moderate in 254 patients (54.9%) and the severity of the disease was mild in 238 (53.4%) patients. The type of neurofibromatosis was not significantly related to gender, age groups, parental education, and ethnicity. The relationship between severity and age (p is equal to less than 0.001) and gender (p is equal to 0.042) was significant and the relationship between visibility and age (p is equal to less than 0.001) was significant but despite the fact that the disease was more visible in men than women, it was not significantly related to gender. CONCLUSIONS: The study results showed that the most common complication in the study population was Cafe au lait spot. In addition, visibility and severity of the disease were mild and moderate, respectively. Keyword: Neurofibromatosis, Demographic information, Clinical Information.

The Relationship Between Death and Do Not Resuscitation Attitudes Among Intensive Care Nurses.

This study aimed to determine the relationship between death and DNR attitudes among ICNs. This descriptive-analytical study was performed on 156 ICNs in 2018. All nurses were enrolled in the study; data collection instruments included Death Attitude Profile-Revised (DAP-R) and the DNR attitude questionnaires. The mean scores of DAP-R and DNR items were 150.89/ ± 23.59 and 91.82 ± 11.41, respectively. There was a significant relationship between death attitude and DNR attitude Famong ICNs. All dimensions of DAP-R significantly predicted attitude toward DNR (P < 0.05). Among those, "neutral acceptance" (1.17 [95% CI (0.68--1.65)] was the strongest predictor and "death avoidance" was the weakest predictor (0.36 [95% CI (0.09--0.62)]. There was a significant relationship between the ICNs' work experience and attitude toward DNR (p = 0.03). The findings can be used in formulation of the national guideline for DNR order.

People's attitudes towards the use of quarantine in the Covid-19 pandemic in Iran: Validity and reliability study.

BACKGROUND: The purpose of this study was first to translate (into Persian) and evaluate the psychometric properties of the attitudes towards the use of quarantine questionnaires (PAQ). METHODS: This methodological study was conducted on 1000 adults' participants in Iran, using convenience sampling. Based on permission from the developer of the scale, it was back-translated. Content validity, exploratory and confirmatory factor analyses were tested. Reliability of the questionnaire was evaluated with test-retest and internal consistency. RESULTS: The adequacy of the sample was acceptable because of the results of the Kaiser-Meyer-Olkin test (0.788), and Bartlett's test of sphericity revealed statistically significant results (P < .001). Exploratory factor analysis showed the 4-factor structure of the instrument. The reliability of the scale was 0.77 based on internal consistency. Also, the intra-class reliability of the scale was 0.9. The attitude of the maximum number of respondents towards quarantine is positive and they support a quarantine in the pandemic of COVID-19 in Iran. CONCLUSIONS: Current study showed that the Persian version of attitudes towards the use of quarantine (PAQ) in the Iranian population including 17 items could be used as a valid and reliable instrument.

Evaluation of QoL in neurofibromatosis patients: a systematic review and meta-analysis study.

BACKGROUND: The neurofibromatoses (NF) are a group of genetic disorders that interfere negatively with the quality of life (QoL) and influence physical, emotional and social statuses. Studying the effects of neurofibromatoses on various aspects of QoL seems important to implement beneficial strategies in increasing the QoL of NF patients. The aim of this study was to review the literature on quality of life in patients with NF and quantitatively evaluate the effects of Neurofibromatosis on various aspects of quality of life by synthesizing available studies. METHODS: This article is written according to the PRISMA checklist. Different databases including PubMed, Scopus, Google scholar and Web of Science were searched to identify studies that examined QoL of patients with neurofibromatosis. The relevant data obtained from these papers were analyzed by a random-effects model. The heterogeneity of studies was calculated using the I2 index and Egger test was used to determine publication bias. The information was analyzed by R and STATA Ver 14. RESULTS: Twelve studies were selected as eligible for this research and were included in the final analysis. The number of participants in the study was 7314 individuals containing 910 NF patients (642 NF1 and 268 NF2) and 6404 healthy subjects. The mean scores of sub-scales of QoL were significantly lower in NF patients compared with control except for the scale of cohesion. Family and NF patients had lower quality of life in all aspects of QoL than controls. Also, this meta-analysis shows that NF negatively effects on physical function, bodily pain, mental health, social function and general health. Subgroup analysis showed that NF had negative effects on all sub-scales of QoL if the study was conducted in adults and used a SF-36 questionnaire. CONCLUSION: This meta-analysis suggests that NF is a broad spectrum disease, affecting physical function, bodily pain, mental health, social function and general health.

Prevention behaviours of oesophageal cancer: Protocol for a mixed-method study.

AIM: The aim was to implement an educational programme for the family members of patients with oesophageal cancer on prevention behaviours in Golestan province, north of Iran. DESIGN: In this mixed-method research, qualitative and quantitative studies will be conducted. METHODS: This study will be carried out using an exploratory mixed-method design in Golestan province, north of Iran in 2018-2019. The research will include three consecutive phases. At first, a qualitative study will be carried out to determine the preventive behaviour and measures of oesophageal cancer. In this phase, the participants will be selected using the purposive sampling method. Later, semi-structured interviews will be conducted with the relatives of patients with oesophageal cancer to collect the necessary qualitative data. The second phase will include a literature review based on the information collected from the first phase. Later, a researcher-made questionnaire will be designed based on the extended parallel process model. Furthermore, a comprehensive programme will be proposed about self-care of the patients with oesophageal cancer. In the third phase, a quantitative quasi-experimental research will be conducted over two groups of participants to measure the effectiveness of this programme. This research was approved by the Ethics Committee of Yazd Shahid Sadoughi University of Medical Sciences, Iran in November 2017. DISCUSSION: Educational interventions should be designed purposefully according to the needs of the target group to improve their self-care behaviours. We also expect that this research can improve the individuals' access to high-quality preventive behaviours with regard to oesophageal cancer. TRIAL REGISTRATION: The project was registered on the Iranian Registry of Clinical Trials, (registration number: IRCT20180725040588N1, date registered: 2th October 2018).

The effectiveness of narrative writing on the moral distress of intensive care nurses.

BACKGROUND: Nursing is a profession that has always been accompanied with common ethical concerns. There are some evidences which indicate that narrative writing on traumatic experiences may improve an individual's emotional health. OBJECTIVE: This study aimed to determine the effectiveness of narrative writing on moral distress of nurses working in intensive care unit. RESEARCH DESIGN: This study was a clinical trial with pre- and post-test design. The frequency and intensity of moral distress was measured by a valid and reliable questionnaire (Corely) at baseline and after 8 weeks. The intervention group was asked to write about their deepest emotions and stressful experiences in the intensive care unit for 8 weeks. PARTICIPANTS AND RESEARCH CONTEXT: Using consensus sampling, 120 nurses of intensive care unit and neonatal intensive care unit of the teaching hospitals (in Iran) were invited to and were randomly allocated into the intervention and control groups. ETHICAL CONSIDERATIONS: Participation was voluntary, data were anonymized, and the confidentiality of the participating nurses and their institutions maintained. The ethical approval was obtained from an IRB or research ethics committee. FINDINGS: In total, 106 nurses completed the trial consisting of 87.75% females. The mean work experience of nurses in the intervention and control groups was 7.21 ± 4.96 and 8.28 ± 5.45 years, respectively. Independent t-test showed no statistical difference neither in the intensity of moral distress (P = 0.8), nor in its frequency (P = 0.5) between the two groups. DISCUSSION: As nurses constantly face ethical tensions, moral distress is a phenomenon that results from the different situations of critical care units. Their concern about receiving negative feedback from the managerial level may have influenced the outcome of the intervention. CONCLUSION: Narratives writing by the nurses showed no effect on reducing the intensity and frequency of moral distress. It seems that due to the intensity of moral distress in clinical settings, we need to test variety solutions to reduce the problem.

Exploring the Experiences of Oncology Nurses about the Factors Facilitating their Presence at the Bedside of Patients with Cancer: A Qualitative Study.

BACKGROUND: The presence of nurses at patients' bedside is regarded as an indication of the quality of care. There is not enough evidence on facilitators of nurses' presence at cancer patients' bedside. AIM: The present study aimed to investigate nurses' experiences of factors facilitating their presence at patients' bedside in oncology ward. SUBJECTS AND METHODS: In this qualitative study, data were collected using purposeful sampling and semi-structured individual interviews with 25 oncology nurses from two teaching hospitals in Sari, Northern Iran, between 2016 and 2017. Interviews were digitally recorded, handwritten, coded, classified, and analyzed using conventional content analysis approach. RESULTS: Data analysis led to the development of three main categories and seven subcategories. The first category, namely, "leverage spirituality" with two subcategories (motivational beliefs and religious motives). "Being with patient with compassion and commitment" is the second category with two subcategories (sense of altruism and compassionate care and adherence to the profession). The third category is "effective communication" with three subcategories (initial methods being patient, soothing communication, and intimate communication). CONCLUSION: The results of this study showed that nurses' spiritual beliefs, kindness, and professional commitment and establishing human-friendly relationships with the patient and family would help the nurses of the oncology unit to have a more effective presence in the patients' bed. It seems that further studies are needed to examine the facilitators of the presence of oncology nurses on patients' bedside based on severity of illness.

Adapting life to the reality of diabetes.

BACKGROUND: Diabetes is one of the most challenging and burdensome chronic diseases of the 21st century. Adaptation to disease is a mental, multidimensional, interactive process and is influenced by social and cultural factors. It should be explained in the cultural context of each society with qualitative studies. AIMS: In this study, we explored the subjective experiences of adaptation to type 2 diabetes among Iranian patients. METHODS: This was a qualitative study using a grounded theory approach. Purposeful sampling was used initially, followed by theoretical sampling based on derived codes and categories as the sampling method. Twenty patients as main participants and 7 from the healthcare system and family members were selected based on a purposeful and theoretical sampling method. Data were collected through semistructured and deep interviews. Data were analysed using the approach of Strauss and Corbin simultaneous with data collection. RESULTS: Five categories that emerged from the data included: perceived threat of disease, reality compliance, comprehensive reconstruction, normalization of living with illness, and return to resources. Finally, data analysis on selective coding led to recognition of "endeavour to reconstruction of life" as the core variable. The core variable showed the way participants adapted to diabetes. CONCLUSIONS: This study showed that the process of adaptation to diabetes has a dynamic nature in which participants make major changes in their cognitive, emotional and behavioural structures in order to have a normal life.

Effect of Lavender Aromatherapy on Anxiety and Fatigue in Hemodialysis Patients: A Systematic Review and Meta-Analysis.

Background: Several studies have evaluated the effects of lavender essential oil on the anxiety of hemodialysis (HD) patients, but most of them did not estimate the pooled effect size. The current systematic review and meta-analysis was conducted to evaluate the effects of lavender on anxiety and fatigue among HD patients. Methods: Eligible studies were selected based on the PRISMA steps and protocol. Literature was retrieved from PubMed, Web of Science, Scopus databases, Cochrane, ClinicalTrials.gov, and Google Scholar Search Engines until Sep 2022. The risk of bias and analysis were evaluated using version 2 of the Cochrane risk-of-bias tool and STATA v.14 software, respectively. Effect sizes were pooled using random effect models. Results: Nine studies were included. Lavender oil significantly reduced the average anxiety of HD patients compared to the control group (SMD: -2.51, 95% CI: [-3.56, -1.45], Z=4.67, P<0.001, I2 :89.9%). Also, it significantly reduced the average fatigue compared to the control group (SMD: -1.56, 95% CI: [-2.49, -0.63], Z=3.29, P=0.001, I2:92.2%). Subgroup analysis indicated controversial results regarding session frequency and drop number of lavender oil. Conclusion: Using Lavender oil significantly reduced fatigue and anxiety in HD patients.

Persistent suffering: Living experiences of patients with rare disease: An interpretative phenomenological study.

BACKGROUND: The low prevalence of rare diseases has caused the need for studies in this field to be neglected. Regardless of the prevalence of rare diseases, many people around the world have to live with the medical, psychological, and social consequences of their condition. Individuals with rare diseases may face challenges that are different from those experienced in more common medical conditions. The life experiences of patients with rare diseases have not been sufficiently investigated. The purpose of this study was to discover the meaning of living as a person with a rare disease. MATERIALS AND METHODS: This interpretative phenomenological study was conducted in 2021-2022 on 10 patients with one of the rare diseases (registered in the Atlas of Rare Diseases of Iran). Based on purposeful sampling, people with rare diseases living in Mazandaran, Golestan, and Tehran provinces were invited to participate in the study. Data collection was done using open and semi-structured interviews. The research question was exploring understanding the experience and meaning of life as a person with a rare disease. Van Manen's interpretive phenomenological approach was used to analyze the data, and the criteria of validity, transferability, and verifiability were used to ensure the trustworthiness of the research. RESULTS: The five main themes "permanent suffering, such as a bird in a cage, rejection, immersion in the whirlpool of thoughts, losing the feeling of life", and 10 sub-themes "nightmare, giving up, deprivation, limitation, worthlessness, being stigmatized, dark vision, confusion, continuous regret, and inferiority feeling" were extracted. CONCLUSION: The results of this study show that the suffering of the disease casts a shadow on all aspects of a patient's life with a rare disease. The effects of illness, disability, limitations, and exclusions had created a human being in a cage, whose right to live like others has been denied.

Raising patients hope in despair: The culture of nursing care of burn pain: An ethnographic study.

BACKGROUND: Although many studies have been carried out to address burn patients' pain and suffering, pain relief still remains an immense unsolved challenge with individual, social, and cultural aspects. MATERIAL AND METHODS: This study was conducted aiming to investigate and explain nursing care in burn patients. This was a semifocused ethnographic research conducted in burns units in a referral teaching hospital (Mazandaran, Iran). The data were collected through descriptive, focused, and selective participant observations and ethnographic interviews with burns unit nurses selected via a purposeful sampling method. The collected data were analyzed on the basis of James Spradley's approach. RESULTS: Three main categories and nine subcategories were obtained from data analysis that are as follows: 1) Bending over backward (tenacity, altruism, dedication, and conscience and constancy), 2) Prevention is worth a pound of cure (unique clinical methods, enhanced frustration tolerance through self-motivation and self-efficacy, raise patient's hope in despair), and 3) undisputed dominance of nursing art (reduced unsettling experiences, burnt and ripped body rehabilitation, patient stress management, and avoidance of false hope). CONCLUSIONS: Although burn nurses are under huge physical and mental pressure, they enhance patients' pain tolerance through their art of nursing, which is a collection of empirical knowledge, huge work conscience, unique clinical skills, and various therapeutic communication techniques.

The Living Experience of Patients with Burn Injuries from Art Nursing Care: An Unspoken Mystery.

Background: Although art and aesthetics are important aspects in nursing care, there is scarcity of literature regarding this area, particularly in relation to patient expectations of art nursing care. This study aims to explore the perceptions of patients with burn injuries regarding art nursing care. Materials and Methods: The present phenomenological study was conducted on 14 patients with burn injuries based on convenience and purposive sampling. Data were collected through deep open-ended and semi-structured interview. Data analysis was performed based on van Manen's Hermeneutic Phenomenology. Results: Patients' experience of art nursing care emerged in the form of three main themes, including "being a healer for patients' wounds", "skilled and specialized care", "praiseworthy care", and six subthemes. Conclusions: The patients in the burn unit demonstrated an understanding and appreciation for the qualities of patience, hard work, compassion, and love that the nurses possess. They also noted the meticulous attention paid by the nurses to their needs, which exemplifies the purest human traits and professional characteristics in patient care and can be seen as an art form in nursing.

Supportive Care Needs (SCN) of Cancer Patients Referred to the Medical Centers in Iran.

OBJECTIVE: The aim of this study was to evaluate the Supportive Care Needs s of cancer patients in Iran. METHODS: This descriptive-analytical, cross-sectional study was conducted on cancer patients referred to public and private medical centers in Gorgan (Northern Iran) in 2020. Cancer patients refered to private medical ccentes were recruited into the study using the convenience sampling method. The reliable and valid "Supportive Care Needs Survey-Short Form" (SCNS-SF) with 34 items in five domains of need (physical and daily living, psychological, sexuality, patient care and support, health system, and information) was used to collect data. RESULTS: Out of 247 patients, 54.7% were females with a mean age of 46.15± 9.36. The most common site of involvement was breast (25.1%), and the duration of involvement was 7.51±6.79 months. The total mean of SCNs was 68.80±18.5 so that the highest (73.68±15.03) and lowest (60.42±27.19) SCNs were related to physical and daily living as well as sexual domains, respectively. The highest frequency (62.3%) of SCNs was related to "fatigue/lack of energy". CONCLUSION: This study showed that cancer patients experienced many unmet needs in various dimensions. Therefore, it is necessary to address these needs simultaneously treating the disease and developing and implementing a care plan based on patients' priorities.

Burden of adult neurofibromatosis 1 questionnaire: translation and psychometric properties of the Persian version.

BACKGROUND: The notion of "burden" has taken a key place in the evaluation of care, particularly in the case of rare diseases. The aim of this study was to evaluate the psychometric properties of the burden of neurofibromatosis 1 questionnaire (BoN) and to determine the perceived disease burden. RESULTS: The 15-item BoN was translated into Persian, and no items were removed based on content validity. The adequacy of the sample was acceptable (KMO = 0.902), and Bartlett's test of sphericity revealed statistically significant results (P < 0.001). Exploratory factor analysis revealed three factors. The reliability of the scale was good (Cronbach's alpha: 0.90), and the intraclass coefficient was 0.85. The severity of the burden of neurofibromatosis was moderate, and the total mean burden score was 33.12 ± 16.12. CONCLUSIONS: The Persian version of the BoN is an acceptable tool in terms of structure and content, and it specifically assesses the practical aspects of daily activities for patients with neurofibromatosis.

Evaluation of the Relationship of Employment and Economic Status with the Feeling of Mental Well-Being in the Elderly Living in Northern Iran.

BACKGROUND AND PURPOSE: The feeling of mental well-being plays a role in mental and physical health, increased life expectancy, and sense of comfort and well-being in human beings. Moreover, quality of life along with economic and social indicators is the greatest desire and most important goal of human life. The aim of this study was to investigate the relationship of employment and economic status with the feeling of mental well-being in the elderly. MATERIALS AND METHODS: In this descriptive-analytical study, 200 elderly people living in Northern Iran, in 2018 were recruited to the study through available sampling method. The data collected using the Subjective Well-Being Questionnaire were analyzed using descriptive (mean, standard deviation, and frequency) and inferential statistical tests (Pearson correlation coefficient and linear regression). The significance level was considered at P<0.050. RESULTS: The mean and standard deviation of the age of the research units was 69.00±8.22 years. The results showed that the mean of psychological well-being was higher than that of other dimensions (80.00±11.80), and emotional well-being had the lowest mean (37.00±6.36). The Pearson correlation coefficient test did not show a significant relationship between employment and feeling of mental well-being (P=0.550), but a positive and significant correlation was observed between economic status and feeling of mental well-being (P<0.001). CONCLUSION: Due to the correlation between economic status and the feeling of mental well-being of elderly people, it is essential to consider the necessary solutions in this regard.

Identifying the Lowest Effective Initial Dose of Prednisolone for the Treatment of Subacute Granulomatous Thyroiditis: A Systematic Review and Meta-Analysis.

BACKGROUND: Subacute granulomatous thyroiditis (SAGT) is an inflammatory disease due to viral infections. Glucocorticoids, especially prednisolone (PSL), are one of the first approaches in the treatment of patients with SAGT. To date, no study has determined the lowest effective dose of prednisolone with the lowest recurrence rate in the treatment of SAGT. This study aimed to use meta-analysis methods to identify the appropriate dosage of prednisolone with the lowest recurrence rate in the treatment of patients with SAGT. METHODS: This study was conducted according to the PRISMA checklist in February 2021. Two independent researchers performed a search for relevant literature published before March 2021 in English databases, including Scopus, MEDLINE (via PubMed), Web of Science, Cochrane Library, Google Scholar, EMBASE, and also Persian electronic databases including SID, Iran medex, Magiran, and Irandoc. The search algorithm was initially developed by using a combination of MeSH terms, keywords, and also Boolean operators ("AND"; "OR"; "NOT"): Subacute thyroiditis, De Quervain Thyroiditis, Glucocorticoids, Prednisolone, Recurrence, and Meta-Analysis. All statistical analyses were performed using STATA 15.0 (StataCorp LLC, College Station, TX, USA) and SPSS 17.0. A random-effects model based on Metaprop was applied for the Meta-analysis. To assess heterogeneity between studies, the chi-squared test and I2 index were used, and for evaluating publication bias, funnel plots and Egger tests were performed. RESULTS: The overall recurrence rate was 14.72% [95% CI: 9.63- 20.58] and there was a significant heterogeneity among the studies [I2 = 69.56%; P=0.000]. To evaluate the lowest effective dose of prednisolone, we divided the studies into two groups based on the mean initial dose of prednisolone: less than or equal to 20 mg/day (group one) and greater than 20 mg/day (group two). The recurrence rate in group 1 was 11% [95% CI: 5.7- 16.2] and in group 2 was 23.6% [95% CI: 11.5- 35.6]. Significant correlations were observed between the initial mean dose of PSL and recurrence rate (r= 0.71; P= 0.013). Begg's funnel plot had no evidence of publication bias in these studies (p=0.160). CONCLUSION: According to the results of this meta-analysis, 15 to 20 mg/day of prednisolone is the most effective dosage with the lowest recurrence rate in the treatment of subacute Granulomatous thyroiditis.

Iranian future healthcare professionals' knowledge and opinions about rare diseases: cross-sectional study.

BACKGROUND: Rare diseases are a new global health priority, requiring evidence-based estimates of the global prevalence of diseases to inform public policymakers and provide a serious challenge to the healthcare system that must not be ignored. The purpose of this study is to investigate Iranian future healthcare professionals' knowledge and opinions about rare diseases. RESULTS: A total of 6838 students responded to the questionnaire. Nursing and medical students had the highest participation. Almost 85% of participants rated their knowledge about rare diseases as poor or insufficient. While nearly 70 percent of participants took courses about rare diseases at university. Finally, 72.7% of future healthcare professionals did not feel ready to take care of a patient with a rare disease. CONCLUSION: The present study has indicated a gap in Iranian medical students' knowledge of rare diseases. The researchers believe that health science policymakers should make a joint effort to improve knowledge about rare diseases. Including courses with regard to rare diseases would be of benefit to future healthcare professionals.

Contextual Barriers of Respectful Workplace in Nursing: A Focused Ethnography.

BACKGROUND: Respectful relationship among nurses is an important influencing factor of positive work environment and nursing outcomes. Disrespectful interpersonal behaviors set the scene for an unpleasant and unhealthy workplace in nursing. This can be harmful to persons and their organization and affect health care outcomes. This study was designed in order to search for contextual barriers to respectful behaviors in the context of nursing. MATERIALS AND METHODS: This study was a focused ethnography that was carried out in medical-surgical wards of Shahid Chamran Hospital in Isfahan in 2018-2019. The data collection method consisted of 140 h of participant observation and semi-structured interviews with 34 informants. The nformants comprised 29 nurses, 2 assistant nurses, a physician, and 2 patients who were selected by purposive sampling. The first author of the study made direct observations as an outsider. The data were analyzed by Spradley's method. RESULTS: Three main categories and eight subcategories were obtained from data analysis that are as follows: 1) Personal self: challenges of perceived respect (negative self-concept, unpleasant feelings, and ineffective communication), 2) Organizational-based perceived disrespect (poor organizational climate, inadequate job condition, restrictive organizational structure), 3) Social self: challenges of showed respect (implicit social norms, cultural gap). CONCLUSIONS: Individual and social attitudes, interactive communication, and organizational factors are the contextual determinants of a respectful workplace in nursing. Consequently, improving self-concept and effective communication skills as well as adjust organizational conditions and value conceptualization in society may effect a respectful workplace in nursing.

The Patients' Experiences of Burden of Neurofibromatosis: A Qualitative Study.

BACKGROUND: Neurofibromatosis Type 1 (NF1) is a common autosomal disorder; the criteria for the diagnosis of NF1 includes café au lait spots, freckling, and Neurofibromas (NF). Skin symptoms have a major impact on patients' Quality of Life (QOL) but little is known about the burden of the disease on patients. The aim of this study was to explore the experiences of patients with NF. MATERIALS AND METHODS: Using purposive sampling, 20 participants were enrolled in this qualitative content analysis study. The study was carried out between 2019 and 2020. Unstructured interviews and field notes were used to gather data. Data collection was stopped when data saturation was achieved. RESULTS: Data analysis revealed 14 subcategories and 4 categories including "failing and falling behind in life", "deprivation and restriction", "social isolation", and "ineffective adaptation to the disease", which indicate the perception of patients with NF. CONCLUSIONS: In addition to the physical burden due to physical complications and problems, NF imposes a high degree of psychological and social burden on patients causing mental conflicts, which in turn results in them failing and falling behind in life. These findings illustrate the need to develop strategies and use multidisciplinary approaches to support patients, and thus to reduce the burden of NF.