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PubMed2004

Knowledge of safety and herb-drug interations amongst HIV+ individuals: a focus group study.

OBJECTIVE: To determine how HIV+ individuals access safety and knowledge of drug interactions related to complementary and alternative medicine (CAM). METHODS: We conducted two separate focus group sessions with HIV+ users of complementary therapies. A total of 8 men participated at an urban health centre. Focus group sessions were audio taped and transcribed verbatim. Analysis was conducted independently and in duplicate, using thematic analysis. RESULTS: All focus group participants described their use of CAM as very important for their health maintenance, giving them a feeling of empowerment in their health care. Potential side effects and safety issues were indicated as major concerns for treatment decisions, but the participant's knowledge of safety issues involved in CAM care for HIV+ patients was limited. The sources used by the participants to gather information regarding safety and interactions with medications were varied but included: their CAM providers, their physicians, books, resources from AIDS Service Organizations, the internet and health food stores. Participants acknowledged that appraising the quality of such information is difficult. CONCLUSIONS: The participants in this study had a strong trust in CAM and used a wide variety of sources to gather information on CAM safety, though their knowledge base was poor. As the use of CAM grows, further research on how to disseminate reliable information on safety and efficacy to this potentially vulnerable population is required.

Anti-HIV Agents↗
PubMed1995

Tobacco industry smokers' rights publications: a content analysis.

OBJECTIVES: This study was undertaken to identify the content of tobacco industry smokers' rights publications and to analyze their major themes. METHODS: Fifty-eight issues of smokers' rights publications from 1987 to 1992 were selected at random and analyzed. The number of publications per year, number of mentions (sentences) in different thematic categories per year, and number of mentions per category per publication were examined. RESULTS: The number of smokers' rights publications increased rapidly from 1987 to 1992. The number of mentions across all thematic categories increased over time, with the largest numbers appearing in 1990, 1991, and 1992. The category of Political and Social Action comprised the highest average number of mentions across years. CONCLUSIONS: These publications appear to be consistent with past and present tobacco industry strategies to counter tobacco control efforts and negative public perceptions by attempting to refute scientific evidence about the health impact of environmental tobacco smoke. Additionally, they serve the industry goals of encouraging smokers to take action to protect their rights, mobilizing public opinion, and delaying societal rejection of smoking and secondhand smoke and acceptance of smoking restrictions.

Advertising↗
PubMed2026

Bibliometric analysis of retinoblastoma research over the past decade.

BACKGROUND: Retinoblastoma (RB), the most prevalent primary intraocular malignancy in children, has emerged as a model disease for exploring the molecular underpinnings of pediatric cancer. Over the past decade, research in this field has accelerated, propelled by advances in genomics, diagnostic imaging, targeted therapies, and global scientific collaboration. METHODS: This study systematically retrieved RB-related publications from 2015 to 2024 using the Web of Science Core Collection. A total of 4990 articles were included. CiteSpace and VOSviewer were employed to perform bibliometric and visual analyses across multiple dimensions, including countries, institutions, authors, journals, and thematic evolution. RESULTS: The United States and China were identified as the leading contributors, jointly accounting for over 40.55% of all publications. US-based journals led in both publication volume and citation impact, underscoring their global influence. Cluster analysis revealed 4 major research domains: clinical diagnosis, treatment, and prognosis; molecular mechanisms and signaling pathways; gene and protein function studies; and research methodologies and experimental models. CONCLUSION: RB research is transitioning into an era of precision oncology, characterized by molecular subtyping, novel therapeutic targets, and individualized treatment approaches. While diagnostic and therapeutic outcomes have markedly improved in high-income countries, significant disparities persist in low- and middle-income regions due to limited access to early detection and comprehensive care. Future priorities should include the refinement of preclinical models, investigation of drug resistance mechanisms, and promotion of international collaboration to standardize diagnostic and therapeutic strategies. These efforts are critical to improving global outcomes for children with RB.

Retinoblastoma↗
PubMed2026

"Will it be enough to be respected?": understanding personal, institutional, and societal harms and benefits of genomics research.

BACKGROUND: Transgender Identity Genomics Research (TIGR)-research examining potential associations between genetic factors and transgender, nonbinary, and gender diverse (trans) identities-takes place in a complex landscape with significant potential to either benefit or harm trans communities. As public and political scrutiny of trans communities intensifies, the stakes and potential impacts of TIGR are heightened and ethical, legal and social implications must be considered. To better understand how those who would be most affected by TIGR view such research, we explored trans adults' perceptions of TIGR in the current environment and how they perceive TIGR may impact their futures. METHODS: Using a community-based participatory research approach, we partnered with a trans-led Executive Stakeholder Board to conduct in-depth interviews with 31 trans adults in the United States between June-December 2024 and conducted a Reflexive Thematic Analysis. RESULTS: Participants (mean age=34 years, range=19-73 years; 61% people of color; 39% nonbinary, 39% transgender women, 22% transgender men) identified possible benefits of TIGR such as personal affirmation, increased social acceptance, and improved access to gender-affirming healthcare. They also expressed concerns about potential harms, including further stigmatization, discrimination, and pathologization of trans identities. While most viewed research in trans communities (including TIGR) as a net positive, some participants felt it less useful compared to addressing more urgent, material challenges trans communities face. CONCLUSION: Our findings underscore that TIGR, like all scientific research, is shaped by the sociopolitical environment. It is imperative that TIGR researchers engage meaningfully and ethically with trans communities to minimize potential harms and center community needs.

Genetics↗
PubMed2003

Rapid assessment procedures of malaria in low endemic countries: community perceptions in Jepara district, Indonesia.

Most studies on community perceptions toward malaria have been undertaken in high-endemic countries, and studies from low-endemic countries have only recently been published. Similar information is also needed for hypoendemic countries such as Indonesia, to cope with the persistence of foci-endemic malaria in these regions. An applied qualitative method, Rapid Assessment Procedures, was employed during a 3-month intensive data collection period in Jepara district, Central Java province. Data were retrieved from 38 free-listings, 28 in-depth interviews, seven focus group discussions and unstructured observation. Qualitative thematic content analysis was applied. In this community, malaria (known as katisen or panas tis) was considered a common but minor illness. Insufficient understanding of malaria signs and symptoms in the subvillages likely leads to delay in illness recognition and treatment; not surprisingly self-treatment is common and the dosage most likely below the recommended dose. The health center was used but when it did not work, most people would shift back to traditional services due to cost considerations. Low understanding and acceptance of the causal link between the mosquito and malaria, likely leading to poor comprehension of preventive activities, as well as confusion of malaria with dengue fever, were identified. In conclusion, this study highlights a consistent gap between the common understanding and the biomedical description of malaria. If case management continues to be the main strategy in malaria control program, the emic perspective of the people must be well-integrated into the program. Likewise, interventions to improve home-treatment should also be developed.

Endemic Diseases↗
PubMed2001

Doctors' and nurses' perceptions of ethical problems in end-of-life decisions.

AIMS: To identify and compare doctors' and nurses' perceptions of ethical problems. Rationale. Ethical problems are a source of tension for health professionals. Misunderstandings or conflicts may result from differing perceptions of ethical problems. If true collaboration is to be achieved, it is important to understand the perspectives of others, particularly when difficult end-of-life decisions must be made. METHODS: In this qualitative study a total of seven doctors and 14 nurses working in acute care adult medical-surgical areas, including intensive care, were asked to describe ethical problems that they frequently encounter in practice. Interviews were taped and transcribed. Thematic analysis followed. RESULTS: All participants experienced ethical problems around decision making at the end of life. The core problem for both doctors and nurses was witnessing suffering, which engendered a moral obligation to reduce that suffering. Uncertainty about the best course of action for the patient and family was a source of moral distress. Competing values, hierarchical processes, scarce resources, and communication emerged as common themes. The key difference between the groups was that doctors are responsible for making decisions and nurses must live with these decisions. Each group, therefore, asked different questions when encountering and interpreting sources of moral distress. CONCLUSIONS: It was concluded that observed differences between doctors and nurses were a function of the professional role played by each rather than differences in ethical reasoning or moral motivation. Although this was a small qualitative study on one institution, and may not be generalizable, results suggest that doctors and nurses need to engage in moral discourse to understand and support the ethical burden carried by the other. Administrators should provide opportunities for discourse to help staff reduce moral distress and generate creative strategies for dealing with this.

Adult↗
PubMed2004

Community neonatal nursing work.

BACKGROUND: A neonatal community nursing service may help families to cope with the early transfer of small, vulnerable infants to home. The previous literature has relied on self-reports to explore this kind of work. AIM: This paper reports a study exploring the work of a community neonatal nursing team in order to describe the strategies and interventions used to support families of preterm infants. METHOD: A qualitative case study design was adopted. Data were collected using fieldwork observations, semi-structured interviews and documentary analysis with a team of four community neonatal nurses. A nursing model of transition was explored as a possible framework for practice. FINDINGS: Thematic data analysis yielded two broad themes: Working with Mothers and Working with Others. Subcategories of Working with Mothers consisted of Baby Well; Mum Happy; Keeping in Touch and One of the Family. Working with Others focussed on multidisciplinary liaison activities. DISCUSSION: The complexity of nursing work was interdependent with maternal caregiving and dependent upon effective liaison with other health care professionals. The nursing model of transition requires further development to offer a sufficiently coherent practice model to direct neonatal nursing care delivery.

Community Health Nursing↗
PubMed2006

Service users' experiences of 'as needed' psychotropic medications in acute mental healthcare settings.

AIMS: This paper reports a study which aimed to explore service users' views and experiences of the processes associated with the prescription and administration of 'as needed' (p.r.n.) psychotropic medications in acute mental health settings. BACKGROUND: Few studies have explored the use of 'as needed' medication in acute mental healthcare settings. Such medication is frequently requested by service users, but the literature is unclear about the reasons for these requests or service users' experiences of this treatment. METHOD: A convenience sample of 22 inpatients participated in face-to-face semi-structured interviews exploring their treatment experiences of 'as needed' psychotropic medication in acute mental health settings in a large city in the United Kingdom in 2005. Thematic content analysis was carried out. RESULTS: Interviewees highlighted the value of 'as needed' medications. However, the process associated with their use was perceived as confusing and stigmatizing. Service users had limited understanding of and felt unsupported in attempts to use alternatives approaches. Additionally, the decision-making and information-giving processes were unclear to them, which raises issues of power and control in acute mental health settings. CONCLUSIONS: Nurses should take account of the issues of power and control when administering 'as needed' medication. The provision of adequate treatment information should be a priority to enable informed choices to be made about this form of medication.

Adult↗
PubMed2006

Student nurses' experiences of caring for infectious patients in source isolation. A hermeneutic phenomenological study.

AIM: To illuminate issues central to general student nurses' experiences of caring for isolated patients within the hospital environment, which may assist facilitators of learning to prepare students for caring roles. BACKGROUND: Because of the development of hospital-resistant micro-organisms, caring for patients in source isolation is a frequent occurrence for supernumerary students on the general nursing programme. Despite this, students' perceptions of caring for this client group remain under researched. DESIGN AND METHODS: Through methods grounded in hermeneutic phenomenology, eight students in the second year of the three-year undergraduate programme in general nursing were interviewed using an un-structured, open-ended and face-to-face interview approach. Data analysis was approached through thematic analysis. RESULTS: Four themes emerged: The organization: caring in context, Barriers and breaking the barriers, Theory and practice, Only a student. The imposed physical, psychological, social and emotional barriers of isolation dramatically alter the caring experience. Balancing the care of isolated patients to meet their individual needs while preventing the spread of infection has significance for students. Applying infection control theory to the care of patients in source isolation is vital for students' personal and professional development. Perceptions of supernumerary status influence students' experiences of caring for these patients. RELEVANCE TO CLINICAL PRACTICE: Designating equipment for the sole use of isolated patients assists students in maintaining infection control standards. Balancing the art and science of caring for patients in source isolation is important to reduce barriers to the student-patient relationship and to promote delivery of holistic care. Staff nurses should consider using available opportunities to impart recommended isolation practices to students thereby linking the theory of infection control to patient care. Providing structured, continuing education for all grades of staff would acknowledge the interdependence of all healthcare workers in controlling hospital-acquired infection.

Adaptation, Psychological↗
PubMed2005

Humanising medical education through faculty development: linking self-awareness and teaching skills.

BACKGROUND: We conducted a longitudinal faculty development programme for medical school faculty, focused on enhancing learner-centred teaching skills, by integrating traditional elements of education, focusing on knowledge, skills and attitudes, with the non-traditional process elements of community building, self-awareness and relationship formation. METHODS: This year-long programme enrolled faculty from a range of clinical departments at a single institution. The participants gathered for day-long sessions in each of 9 months and also met at lunchtime once a month for "booster" meetings. Sessions were organised according to content areas identified as relevant to enhancing teaching skills. In addition to each content area, a variety of experiential and process learning methods were incorporated and modelled in each session. The impact of the programme was assessed using self-report data after each session, and together with paired interviews at the completion of the programme. EVALUATION: Programme attendance was 97%. Qualitative thematic and content analysis showed that faculty reported renewed energy and enthusiasm for teaching, as well as skills mastery. Faculty also reported significant improvements in self-awareness and habits of lifelong learning. Many faculty members felt that a singular benefit of the programme was developing and nurturing personal as opposed to instrumental relationships. CONCLUSIONS: It is feasible to successfully convene clinical faculty from different departments in the same faculty development programme with little or no concern for competition and conflict. The key to success is integrating content and process dimensions into a framework of community building and collective engagement. From the participants' perspective, skills and confidence, which by self-report increased for all participants, was less consequential than the opportunity to learn about themselves and their relationships to others in a safe environment. We have conducted this programme for 5 successive years.

Curriculum↗
PubMed2006

From devastation to integration: Adjusting to and growing from medical trauma.

Recent trauma research has begun to investigate the possibility of posttraumatic growth. However, most studies have investigated posttraumatic growth using quantitative methods and thus have neglected people's subjective experience and have left unexamined post-traumatic growth in persons with visible impairment. To fill some of these gaps, the authors examined the process of recovery and posttraumatic growth using a qualitative method. They interviewed 10 participants with visible impairment from chronic illness or serious injury using a semistructured interview. Using a grounded theory data analysis procedure, the authors developed a stage model of trauma and recovery from the interviews. The stages that emerged are thematically entitled Apprehension, Diagnosis and Devastation, Choosing to Go On, Building a Way to Live, and Integration of the Trauma and Expansion of the Self. The authors discuss limitations of the study and clinical implications for psychological counseling with this population.

Adaptation, Psychological↗
PubMed2006

The sound of death rattle I: are relatives distressed by hearing this sound?

BACKGROUND: Death rattle is the noisy, rattling breathing that occurs in many dying patients. Health professionals intervene because the sound is said to distress attendant relatives. We found no formal study to confirm or refute relatives' distress, so we decided to ask the relatives. METHOD: Face-to-face semi-structured interviews with 27 bereaved relatives to investigate their experience of terminal care and what their response had been to the sound of death rattle if this had occurred. Interview transcripts were subjected to thematic content analysis. RESULTS: We found that almost half of the 12 relatives who had heard the sound of death rattle had been distressed by it. The others were either neutral about the sound or found it a helpful signal of impending death. CONCLUSION: We confirmed that some relatives do find it distressing to hear the sound of death rattle. However, our expectation that relatives are universally disturbed by this sound was unfounded. There is no justification for a 'blanket' approach to therapeutic intervention when death rattle occurs. A better understanding is required of how relatives make sense of the sound of death rattle.

Attitude to Death↗
PubMed2026

Not Forgotten: Patient Experiences with Genetic Variant Reclassifications.

PURPOSE: Genetic variant reclassification is increasingly common in clinical genomics, yet limited data describe how patients experience re-contact and variant reclassification in routine clinical care. METHODS: We conducted semi-structured qualitative interviews with 20 adult patients who received a variant reclassification following routine clinical genetic testing. Interviews explored emotional responses, communication experiences, and perceived value of genetic testing. Data were analyzed using Template Analysis, a form of thematic analysis. RESULTS: Three overarching themes were identified. Participants identified a need for improved communication of reclassified results, particularly with respect to timing, modality, and contextualization (Theme 1). Experiences with reclassification also shaped perceptions of the value of genetic testing, with most participants viewing testing as worthwhile despite its evolving nature (Theme 2). Finally, many participants interpreted reclassification as evidence of personalized and ongoing care, reinforcing trust in genetic testing and biomedical research (Theme 3). Participants generally preferred to be informed of reclassified results regardless of reclassification type, although the direction of reclassification influenced emotional responses and preferred modes of communication. Downgrades from variants of uncertain significance to benign or likely benign were widely viewed as meaningful by participants. CONCLUSION: Variant reclassification was experienced as a signal of personalized, ongoing care. Timely, contextualized, patient-centered re-contact practices may reduce uncertainty, strengthen trust, and help patients not feel forgotten.

Journal Article↗
PubMed2005

A qualitative study of help seeking and primary care consultation prior to suicide.

BACKGROUND: Many suicides may be preventable through medical intervention, but many people do not seek help from a medical practitioner prior to suicide. Little is known about how consulting decisions are made at this time. AIM: To explore how distressed individuals and members of their lay networks had made decisions to seek or not to seek help from a medical practitioner in the period leading up to suicide. DESIGN OF STUDY: Qualitative analysis of psychological autopsy data. SETTING: One large English county. METHOD: Semi-structured interviews with close relatives or friends of suicide victims were conducted as part of a psychological autopsy study. Sixty-six interviews were transcribed verbatim and analysed using a thematic approach. RESULTS: Relatives and friends often played a key role in determining whether or not suicidal individuals sought medical help. Half the sample had consulted in their final month and many were persuaded to do so by a relative or friend. Of those who did not consult, some were characterised as help-resisters but many others had omitted to do so because no-one around them was aware of the seriousness of their distress or considered it to be medically significant. A range of lay interventions and coping strategies was identified, including seeking non-medical help. CONCLUSION: Greater attention needs to be given to the potential role of lay networks in managing psychological distress and preventing suicide. A balanced approach to suicide prevention is recommended that builds on lay knowledge and combines medical and non-medical strategies.

Adaptation, Psychological↗
PubMed2001

Physical activity of Korean immigrant women in the U.S.: needs and attitudes.

The purpose of the study was to explore women's own needs for and attitudes toward physical activity among Korean immigrant women in the US using feminist approach and transition theory. This was a cross-sectional study consisting of quantitative and qualitative phases. Using convenience sampling methods, 54 Korean immigrant women were recruited for the quantitative phase, and 15 women among them were recruited for the qualitative phase. Questionnaires and semi-structured interviews were used to collect data. The data were analyzed using descriptive and inferential statistics and thematic analysis. The findings indicated that the women's needs for and attitudes toward physical activity were influenced by the contexts of their culture and immigration, and deeply associated with the women's daily experiences. Some implications for future research and nursing practice are proposed based on the findings.

Acculturation↗
PubMed2004

Interpreting the meaning individuals ascribe to returning to work after traumatic brain injury: a qualitative approach.

OBJECTIVE: The purpose of this study was to describe, qualitatively, the meaning individuals ascribe to returning to work after traumatic injury to the brain. DESIGN: A qualitative multiple-case study design was used for this study to allow for flexibility during data collection and to support naturalistic generalizations. METHODS: A random sample of two participants was included in the study using snowball sampling. Semi-structured interviews and written documentation was used to collect data. Cross-case analysis was used to identify phenomenological themes. RESULTS: While defining the meaning of work, thematic analysis revealed three themes: (a) experience of finding work after injury, (b) experience of maintaining work and (c) independence related to work. CONCLUSION: The several important points that were identified throughout semi-structured interviews were how individuals subjectively and objectively define work, important points about personal experiences finding and maintaining work and the societal value individuals relate to work. Important themes found in this study could be addressed by intermittent long-term interventions following traumatic brain injury (TBI).

Adaptation, Psychological↗
PubMed2004

Choosing to attend an asthma doctor: a qualitative study in adults attending emergency departments.

BACKGROUND: Asthma treatment guidelines currently recommend a 'therapeutic partnership' to achieve best care. It is frequently assumed that individuals presenting to emergency departments with asthma do not have a good doctor-patient relationship. We asked what is the nature of patients' relationships with their doctors in those presenting to hospital emergency departments for asthma care. METHODS: A qualitative study of all consenting individuals aged 18-70 years who presented to a hospital emergency department over 2 months was carried out. Sixty-two participants (19 male) engaged in in-depth interviews which were taped, transcribed and underwent thematic analysis. Questionnaire data were also collected and asthma severity determined. RESULTS: Nearly all patients (61/62) had a doctor whom they saw for their asthma. Patients made thoughtful choices on where they sought care according to their needs. Our findings identified that perceptions of doctors' competence, listening to patients and time constraints were important influences on doctor-patient relationships. Participants had strong expectations that their personal disease experience would be acknowledged by their doctors. CONCLUSION: This group of patients had doctors who cared for their asthma. The acceptability of medical care was determined as much by patient choice as by the quality of the doctor-patient relationship.

Adolescent↗
PubMed2006

HIV vaccine trial participation among ethnic minority communities: barriers, motivators, and implications for recruitment.

BACKGROUND: Underrepresentation of ethnic minority communities limits the generalizability of HIV vaccine trial results. We explored perceived barriers and motivators regarding HIV vaccine trial participation among low-socioeconomic ethnic minority respondents at risk for HIV. METHODS: Six focus group interviews were conducted using a semistructured interview guide. Participants (N = 58, mean age = 36 years, 37% female, and 56% Latino/a and 35% African American) were recruited using venue-based sampling in Los Angeles. Data were analyzed using narrative thematic analysis and Ethnograph qualitative software. RESULTS: Perceived barriers to HIV vaccine trial participation, in rank order, were (1) vaccine-induced HIV infection, (2) physical side effects, (3) uncertainty about vaccine efficacy, (4) uncertainty about other vaccine characteristics, (5) mistrust, (6) low perceived HIV risk, (7) study demands, (8) stigma, and (9) vaccine-induced HIV seropositivity. Motivators were (1) protection against HIV infection, (2) free insurance and/or medical care, (3) altruism, and (4) monetary incentives. CONCLUSIONS: Population-specific HIV vaccine trial recruitment and implementation strategies should address trial risks from a family perspective, cultural gender norms, mistrust, low perceived HIV risk, the importance of African-American and Latino/a community participation in HIV vaccine trials, and misconceptions about gaining protection against HIV infection. Increasing the cultural relevance of trial recruitment and implementation should facilitate the participation of Latinos/as and African Americans in HIV vaccine trials.

AIDS Vaccines↗