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PubMed2025

Sustainability in translational genomics research with undiagnosed patients: What is it, why do we need it, and how do we do it?

PURPOSE: Genomics research enrolling undiagnosed patients can provide answers for one-third of participants, and more can be diagnosed through future reanalysis. The long-term value for participants has raised questions of the sustainability of these studies, but the meaning, goals, and best practices for sustainability remain unclear. METHODS: We conducted semistructured interviews with researchers leading studies enrolling undiagnosed patients in the United States and Canada and used thematic content analysis to summarize key themes. RESULTS: Researchers lacked consensus regarding what sustainability was actually intended to sustain, variably referencing study procedures, personnel, data access, and participant recontact. However, the primary driver of sustainability was widely shared as the perceived obligation to continue to search for answers for undiagnosed participants. Proposed sustainability strategies included diversifying funding sources, developing centralized data infrastructure, and building collaborations across disciplines and institutions. Researchers also emphasized the need to address ethical concerns, to integrate research with clinical care, and for leadership from research funders to guide these efforts. CONCLUSION: Although genomics researchers perceived continued obligations to undiagnosed participants, they also lacked a shared understanding of the goals of sustainability and called for coordinated efforts to develop centralized infrastructure that integrated research and clinical care.

Humans↗
PubMed2025

Polygenic risk scores in the clinic: Health-system leaders and primary care providers weigh in.

PURPOSE: The fourth phase of the Electronic Medical Records and Genome Network is testing the return of 10 polygenic risk scores (PRS) across multiple clinics. Understanding the perspectives of health-system leaders and frontline clinicians can inform plans for implementation of PRS. METHODS: A total of 15 health-system leaders and 20 primary care providers took part in semistructured interviews. A descriptive thematic analysis was performed. RESULTS: Interviewees generally perceived PRS to have limited clinical utility, although they saw value in the potential to identify and act upon risks that are not otherwise detectable. Perceived potential drawbacks included negative psycho-emotional effects on patients, unnecessary follow-up, distracting from population health priorities, opportunity costs, and medicolegal liability. Implementation considerations included increased encounter time and the need for clinical practice guidelines, provider training, care coordination, and point-of-care resources. CONCLUSION: Participants generally expressed favorable views of precision medicine and also identified potential challenges to introducing PRS in clinical care. Implementation will require careful assessment of clinical utility vs usual care; ensuring that the benefit to be realized merits the time and resources required to interpret, return, and act on results and developing guidelines and other decision-making supports for providers and patients.

Humans↗
PubMed2006

Living with endometriosis: the perspective of male partners.

OBJECTIVE: The purpose of this qualitative study was to explore the experiences of partners of women with endometriosis. METHODS: Sixteen male partners completed questionnaires pertaining to the impact of endometriosis. Three male partners participated in additional semistructured interviews. RESULTS: Thematic analysis of combined questionnaire and interview data revealed several common emotional themes relating to living with endometriosis. These strong emotions included low mood, anxiety, and powerlessness and contributed to a grief-like process much like that experienced by their female partners, with some also reporting acceptance and relationship growth. The clinical significance of these findings for systemically effective management of endometriosis will be discussed.

Adult↗
PubMed2004

Water quality change in reservoirs of Shenzhen, China: detection using LANDSAT/TM data.

The objective of this research is to explore a precise and fast way of monitoring water chemical and biochemical quality in the reservoirs of Shenzhen, China. Water quality change in 1988 and 1996 are detected by synthesizing satellite data and ground-based data. One scene Thematic Mapper (TM) image in winter of 1996 was acquired and the simultaneous in situ measurement, sampling and analysis were performed. Main methods include radiometric calibration of TM remote sensor, atmospheric correction to image data and statistical model construction. The results indicate that satellite-based estimates and in situ measured water reflectance have very high correlation, and the root mean square differences between two kinds of indices are close to 0.02-0.03 for each TM band in Visible-Near Infrared (VI-NIR) range. Statistical relationship between calibrated image data (average of 5 x 5 pixels) of TM bands and laboratory analyzed data of water samples indicated reflectance of TM band 1 to band 4 and organic pollution measurements such as TOC, BOD and COD had higher correlation. The same scene TM data in the winter of 1988 was processed in the same procedure. Results indicate that water quality of most reservoirs have become worse. Water of eastern reservoirs near Dongjiang River is characterized with higher TOC and TSS, and water of western reservoirs is characterized with higher BOD and COD.

China↗
PubMed2003

Living with a woman with fibromyalgia from the perspective of the husband.

BACKGROUND: Fibromyalgia (FM) is a chronic pain syndrome, which affects mostly middle-aged women. The syndrome is poorly understood and treatment is mainly palliative. The diagnosis is established from diagnostic criteria. Living with FM means living a life greatly influenced by the illness in various ways for people affected. Aim of the study. The aim of this study was to describe the experiences of living with a woman with FM from the husbands' perspective. METHODS: Five men married to women with FM were interviewed using a narrative approach. The interviews were analysed using qualitative thematic content analysis. FINDINGS: The analysis resulted in the following seven themes: increasing responsibility and work in the home; being an advocate for and supporting the wife; learning to see the woman's changing needs; changing relationship between spouses; changing relationship with friends and relatives; deepening relationship with the children and lacking information and knowledge about FM. The findings show that the women's illness had a great impact on husbands' lives, and that husbands lacked information about the woman's illness. CONCLUSION: This study shows that it is not only the women with FM who experience a changed life; the whole family life is influenced and limited by FM. The husband's role in the family changes, first and foremost concerning responsibility and workload within the family. This must be taken into consideration in care planning. This study also highlighted the need of information and knowledge about FM expressed by the participants, information that health care personnel have a great responsibility to give.

Adaptation, Psychological↗
PubMed2003

Experiencing the loss of mobility: perspectives of older adults with MS.

PURPOSE: The purpose of this study was to develop an understanding the experience and meaning of mobility loss among older adults with multiple sclerosis (MS). This work is part of a larger study on the health concerns and service needs of older adults with MS. METHODS: Twenty-seven people with MS (mean age = 62 years, range = 55-82) were interviewed using a phenomenological approach. RESULTS: Thematic analysis found that three factors contributed to participants' experience of mobility as a person with MS: reality of having MS, mobility needs, and contextual factors. Participants discussed how the reality of MS meant variability in their ability to get around and the importance of trying to remain in control over their mobility experiences. The experience of mobility lead participants to mourn losses, take action, and contemplate their futures. They expressed concerns about the continual declines in their mobility, losing independence, becoming a burden on caregivers, and the potential for having to move into a nursing home. CONCLUSIONS: Findings provide insight into the experience of mobility loss among older adults with MS, and point to potential strategies that can be used to help people cope with and adapt to these losses.

Activities of Daily Living↗
PubMed2005

Refocusing health visiting -- sharpening the vision and facilitating the process.

AIM: The purpose of this study was to explore the development of public health nursing in a primary care trust that focused around the evaluation of a newly introduced public health nursing role. The intention was to inform role development during the three year evaluation period. BACKGROUND: Despite health visitors having been identified in the recent past as being in prime position to assume the public health role envisioned by the British Government in the New NHS, the vision for the 'new look' health visitor has been rather blurred. METHODS: An action research approach utilised 22 individual and four group (number of participants 33) interviews with a range of stakeholders. Thematic analysis was used on all transcripts. FINDINGS: Four main headings were identified to organise and present the findings -- definitions of public health; continuum of practice; contextual factors in public health development; and inhibitors to public health practice development. The findings suggest that there are a number of factors challenging the health visiting response to the public health agenda. Facilitating clarity of role and purpose must be a management priority. A tool, developed from this study, offers a means to explore practice within a primary care -- public health continuum and provides a schema against which to set and action practice development.

Attitude of Health Personnel↗
PubMed2006

Explaining variation in GP referral rates for x-rays for back pain.

BACKGROUND: Despite the availability of clinical guidelines for the management of low back pain (LBP), there continues to be wide variation in general practitioners' (GPs') referral rates for lumbar spine x-ray (LSX). This study aims to explain variation in GPs' referral rates for LSX from their accounts of the management of patients with low back pain. METHODS: Qualitative, semi-structured interviews with 29 GPs with high and low referral rates for LSX in North East England. Thematic analysis used constant comparative techniques. RESULTS: Common and divergent themes were identified among high- and low-users of LSX. Themes that were similar in both groups included an awareness of current guidelines for the use of LSX for patients with LBP and the pressure from patients and institutional factors to order a LSX. Differentiating themes for the high-user group included: a belief that LSX provides reassurance to patients that can outweigh risks, pessimism about the management options for LBP, and a belief that denying LSX would adversely affect doctor-patient relationships. Two specific differentiating themes are considered in more depth: GPs' awareness of their use of lumbar spine radiology relative to others, and the perceived risks associated with LSX radiation. CONCLUSION: Several key factors differentiate the accounts of GPs who have high and low rates of referral for LSX, even though they are aware of clinical guideline recommendations. Intervention studies that aim to increase adherence to guideline recommendations on the use of LSX by changing the ordering behaviour of practitioners in primary care should focus on these factors.

Journal Article↗
PubMedDate not supplied

Registered nurses' expectations and experiences of first year students' clinical skills and knowledge.

BACKGROUND: Clinical education is a fundamental component of nurse education. In theory, this aspect involves integrated input from registered nurses, clinical educators and university lecturers. Registered nurses are important contributors to this process and play a major role in influencing and shaping undergraduate nursing students' early clinical experiences. Despite this important function, their voice has been somewhat neglected. Little is known about registered nurses' expectations and experiences of first year aduate nursing students undertaking their first clinical placement. AIM: The aim of this study was to explore registered nurses' expectations and experiences of first year undergraduate students' levels of knowledge and clinical skills. METHOD: Three consecutive focus groups were conducted with a purposive sample of 16 registered nurses. Interviews were audiotaped and transcribed and thematic analysis applied to the data to identfy themes imbedded in the data sets. FINDINGS: Three main themes emerged: (1) Clinical nursing skills (2) Knowledge requirements and (3) Experiences of reality shock. The findings highlight that registered nurses' expectations of first year students' clinical skills and knowledge were not consistently met. Registered nurses placed significant emphasis upon a range of basic skills, but acknowledged that some aspects of nursing knowledge can only be learned through experience. Furthermore, they demonstrated a considerable degree of empathy surrounding the reality shock that students might experience during early clinical placement. CONCLUSION: Findings from this study suggest that registered nurses and academics differ in their perceptions surrounding the level of clinical skills first year students should have during their first clinical placement. There appears to be a two way theory practice gap between registered nurses in clinical practice and academics in tertiary institutions. Improved communication between registered nurses and providers of nurse education may assist in addressing some of the issues raised by this study and reduce the theory practice gap, which remains 'alive and well'.

Adult↗
PubMed2004

Grandparent caregiving role in Filipino American families.

The purpose of this preliminary study was to explore the Filipino American grandparent caregiver role of grandchildren. This descriptive qualitative study utilized three data collection methods: demographic information sheet, focus group, and field notes. The Filipino American grandparents were recruited from a church in Honolulu, Hawaii. Thematic analysis was used to analyze narrative data. Filipino American grandparents view the grandparenting caregiving role as a normative process rather than a burden in which families take on responsibilities as part of cultural beliefs and norms such as pakikisama, utang na loob, and authoritarianism. Pakikisama is family unity and closeness and Utang na loob is mutual reciprocity "the give and take" and obligation in relationships.

Adaptation, Psychological↗
PubMed2026

Relational care in community mental health: Evaluating staff experiences in Intensive Community Care Services (ICCS) vs treatment as usual.

BACKGROUND: The quality of healthcare delivery relies heavily on building strong relationships between healthcare providers (HCPs) and clients. This study presents the results of a process evaluation for a Randomised Controlled Trial (RCT) examining the effectiveness of Intensive Community Care Service (ICCS) vs Treatment as Usual (TAU; inpatient or core community CAMHS). METHODS: Thirty-four semi-structured interviews were conducted with staff across various services, including 20 from ICCS and 14 other TAU services. A thematic decomposition analysis was conducted on the data, and specific themes relevant to staff experiences of young people's engagement with services and overall recovery. RESULTS: Three main themes were observed in the HCP data (1. Relational Ecologies: barriers and enablers to engagement, 2. flexibility of approach amidst systemic pressures and 3. the web of trust in the relationship-building process). HCPs highlighted the necessity of developing trust and rapport through non-clinical engagement strategies, such as informal visits and personalised interactions. HCPs emphasised that without trust, treatment effectiveness diminishes, necessitating a tailored approach rather than a one-size-fits-all model. The flexibility in duration of treatment and methods of engagement was noted as crucial in accommodating individual client needs and fostering an open, trusting environment necessary for long-term recovery. CONCLUSION: The findings highlight the vital importance of relational care models, especially ICCS, in addressing the complex needs of Children and Young People (CYP). Flexible, family-centred approaches improve trust, engagement, and long-term recovery outcomes. Recommendations include tackling systemic barriers and expanding relational care models within CAMHS to meet increasing mental health demands effectively. Further research should investigate scalable strategies for integrating these insights into wider mental health service frameworks.

Humans↗
PubMed1998

Synthetic Analysis for Extracting Information on Soil Salinity Using Remote Sensing and GIS: A Case Study of Yanggao Basin in China

/ This paper reports the experience of extracting information on the salinity of soil and offers a method of synthetic analysis. The experimental areas for analysis are located in Yanggao Basin, Shanxi Province, China. The types of soil are mainly meadow soil and salinized meadow soil. The method of synthetic analysis of salinity uses a geographic information system (GIS) as a tool, building a basic saltwater analysis model of saline soil and adjusting the result with expert experience after computer processing. The method of feature extraction has been used for remotely sensed data. An optimum combination of features has been determined and, after comparing several combinations in the Yanggao region, an improved result has been obtained after Kauth-Thomas (K-T) transformation. For precise quantitative analysis of the salinization, not only Thematic Mapper (TM) remote sensing data, but also two forms of non-remote-sensing data are needed: depth of groundwater and mineralization rate of groundwater according to the theory of genesis of soil. For the analysis of synthetic compounded multisources, a generalized Bayes classification is used after overlay, matching, and related coefficients have been determined. On the premise that various information sources are independent, global membership functions with probability are used to combine various pieces of information in order to apply them directly to the pixels and classifications of soil salinity. The experiment indicates that this analytical method is sound because of the increased speed of processing and its simplicity and improved precision of classification of salinity. Finally, it is necessary to examine and adjust the factors using expert intelligence. The experiment shows that synthetic analysis using the geographic information system can raise the precision of quantitative analysis of salinity, which has advantages for environmental monitoring and management.KEY WORDS: Salinity; Remote sensing; Thematic Mapper; Geographic information system; Classification

Journal Article↗
PubMed2006

Haemodynamic instability after cardiac surgery: nurses' perceptions of clinical decision-making.

BACKGROUND: Cardiac surgical patients are distinguished by their potential for instability in the early postoperative period, highly invasive haemodynamic monitoring technologies and unique clinical presentations as a result of undergoing cardiopulmonary bypass. Little is known about nurses' perceptions of assuming responsibility for such patients. An understanding of nurses' perceptions may identify areas of practice that can be improved and assist in determining the adequacy of current decision supports. AIM: The aim of this study was to describe critical care nurses' perceptions of assuming responsibility for the nursing management of cardiac patients in the initial two-hour postoperative period. DESIGN: An exploratory descriptive study based on naturalistic decision-making. METHODS: Thirty-eight nurses were interviewed immediately following a two-hour observation of their clinical practice. Content analysis and a systematic thematic analysis process called 'Framework' were used to analyse the interview transcripts. RESULTS: Nurses described their perceptions of managing patients in terms of how they felt about making decisions for complex cardiac surgical patients and in terms of how clinical processes unique to the admission phase impacted their decision-making. Nurses felt either daunted or stimulated and challenged when making decisions. Nurses identified handover from anaesthetists, settling in procedures and forms of collegial assistance as important processes that impacted their decision-making. CONCLUSION: Nurses' previous experiences with similar patients influenced how they felt about making decisions during the initial two-hour postoperative period, but did not alter their views about processes important for patient safety during this time. RELEVANCE TO CLINICAL PRACTICE: Feelings expressed by nurses in this study highlight the need for clinical supervision and appropriate allocation of resources during the immediate recovery period after cardiac surgery. Nurses identified ways to improve clinical processes that impacted their decision-making during the immediate recovery of cardiac surgical patients.

Adult↗
PubMed2005

A focus group analysis of relapse prevention strategies for persons with substance use and mental disorders.

OBJECTIVE: The authors conducted a qualitative, thematic analysis of focus group data to determine the strategies and supports persons with dual diagnoses rely on in their relapse prevention efforts. METHODS: Data from four focus group sessions conducted at a large psychosocial rehabilitation center were analyzed for recurrent responses about what was most helpful in maintaining remission and grouped into major categories and subcategories. Each focus group comprised four to nine consumers who had been in remission from substance use for at least six months. A total of 27 consumers participated in the focus groups. RESULTS: The data indicate that maintaining stable housing, relying on "positive" social support, engaging in prayer or relying on a "higher power," participating in a meaningful activity, and thinking differently about life are important strategies for consumers in their attempts to stay clean. Just as frequently mentioned in the groups were conscious attempts to eat regularly, get sufficient sleep, and look presentable. CONCLUSION: Although this study was exploratory in nature, it identified areas for further qualitative study of strategies for relapse prevention among persons with dual diagnoses.

Adult↗
PubMed2006

From manila to monitor: biographies of general practitioner workspaces.

This article presents a study that explores how general practitioners (GPs) reflect on their workspaces and what that tells us about how professional practice is enacted. The study employed biography as its data collection method to enable three pilot and nine other GPs from the Swansea Region in the UK to write about their consulting rooms. Thematic analysis of biographies, employing individual and group analysis sessions, revealed eleven themes of GP workspace. These indicated that although a minority of the group were totally satisfied with their environments, most of the group spent time and energy finding ways of creating environments of 'best fit', thus enabling lack of function to become part of their daily routine.

Biographies as Topic↗
PubMed2026

Mapping the de-implementation of traditional diagnostic tests in pediatric acute lymphoblastic leukemia.

INTRODUCTION: Advances in cancer diagnostics raise questions about when and how to de-implement traditional approaches; however, these processes remain poorly described. At St. Jude Children's Research Hospital (SJCRH), routine conventional cytogenetics for pediatric acute lymphoblastic leukemia (ALL) diagnosis was de-implemented in 2018 following adoption of clinical genomics. This study aimed to map this process to inform future diagnostic de-implementation initiatives. METHODS: Interviews were conducted with SJCRH staff involved or impacted by cytogenetics de-implementation. Data were analyzed using thematic and rapid qualitative analysis informed by the Consolidated Framework for Implementation Research. Member-checking was used to verify and refine process maps, which were subsequently reviewed by an external expert panel, representing diverse settings, through focus group discussions. RESULTS: Thirteen SJCRH clinicians participated. De-implementation was described as successful, with no negative impact on patient outcomes. Decision-making began with internal correlation studies that demonstrated superior diagnostic performance of clinical genomics. De-implementation was viewed as a natural evolution that improved molecular classification, resource allocation, and workflow efficiency. Perceived risks included loss of cytogenetics competency, delayed turnaround time, and career insecurity, all addressed institutionally. Lessons learned highlighted the importance of deliberate discussion about logic and evidence supporting de-implementation. Fifteen external experts offered suggestions to improve process map generalizability, highlighting institutional- and system-level considerations. CONCLUSION: De-implementation of cytogenetics in ALL in favor of clinical genomics was successful at SJCRH. This study offers an example of diagnostic de-implementation in cancer care and proposes a structured approach to guide future efforts. De-implementation should be considered alongside introduction of novel diagnostic approaches.

cancer diagnostics↗
PubMed2006

Korean immigrant women's meanings of breast, breast cancer, and breast cancer screenings.

PURPOSE: Koreans are one of the fastest growing Asian populations in the U.S. since 1960s. In Korean immigrant women (KIW), breast cancer was reported as the most frequently diagnosed cancer. However, their screening rates for breast cancer are lower than national guidelines; it is assumed that underlying cultural schemas of breast, breast cancer, and its screening modalities exist and need to be studied. This study was aimed to investigate cultural meanings of breast, breast cancer, and breast cancer screenings in KIW. METHODS: Using cultural models theory from cognitive anthropology, naturalistic qualitative methodology was utilized. Three focus group interviews with fifteen KIW were conducted. Thematic analysis with constant comparison technique was performed eliciting units of meaning, categories, and themes. RESULTS: The cultural schema of the meaning of breast is "mother who is breast-feeding her baby," with two themes of "balance in size," and "shyness." Regarding breast cancer, three themes, i.e., "indifference," "fear," and "uncertainty" are emerged. "Lack of information about screening modalities" is the overarching schema with reference to breast cancer screenings. CONCLUSIONS: The findings of this study demonstrate unique cultural models of KIW related to breast cancer and its screenings, which are critical to understand and penetrate their barriers to breast cancer screening.

Adult↗
PubMed1999

Breast cancer screening and African American women: fear, fatalism, and silence.

PURPOSE/OBJECTIVES: To explore the beliefs, attitudes, and practices related to breast cancer and breast cancer screening among low- and middle-income African American women. DESIGN: Qualitative study using focus group methodology. SAMPLE/SETTING: 26 African American women, age 40-65, selected from three employment groups, recruited from a community-based center and a local teacher's union in a moderate-sized urban area. METHODS: Three 90-minute focus group discussions exploring breast cancer beliefs, attitudes, and practices were audiotaped, transcribed verbatim, and analyzed using thematic context analysis techniques. FINDINGS: When breast cancer was discussed, fear was the predominant feeling expressed in all groups. This fear was a primary reason not to engage in breast cancer screening. Unemployed women and service workers emphasized the role of violence in causing breast cancer, whereas teachers discussed injury and sex as causing breast cancer. All participants stressed that breast cancer is seldom discussed within the African American community. Teachers added that this secrecy within the African American community leads to breast cancer being viewed as a white woman's disease. CONCLUSIONS: Despite initiatives promoting breast cancer awareness. African American women still hold misconceptions regarding the etiology of breast cancer and fatalistic perspectives regarding breast cancer outcomes, perhaps because breast cancer is discussed infrequently. Because pain, fear, and fatalism were discussed in all groups, future research should address the influence of these factors to increase screening behaviors. IMPLICATIONS FOR NURSING PRACTICE: Because unemployed women, service workers, and teachers differed in their beliefs about breast cancer and breast cancer screening, nurses must be mindful of the need to tailor Interventions to address the needs of both low- and middle-income African American women.

Adult↗