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Results for “Qualitative semi-structured interviews”

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PubMed1990

The work of patients and spouses in managing advanced cancer at home.

The purpose of this paper is to report the findings of a descriptive study which identified the resources used by patients with advanced cancer and their spouses to manage at home. Data were collected through semi-structured interviews with a sample of seven couples identified through two ambulatory clinics at a regional cancer institute. Participants were patients with advanced cancer, between the ages of 45 and 66, and their spouses. Interviews, conducted with each individual and with each couple, were audiotaped, transcribed, and subjected to qualitative analysis. Content analysis showed that patients and spouses utilized internal and external resources, and that external resources were either physical or interpersonal in nature. Conceptual analysis indicated that both patients and spouses dealt with facing either inevitable or uncertain death by engaging in various types of "work." Understanding the dimensions of such work has implications for health care professionals caring for patients and families in palliative care.

Activities of Daily Living↗

PubMed1991

[Perception of life's meaning by drug-dependent patients].

This study aims to determine how the drug dependent patient subjectively experiences his purpose in life, as well as establishing guide-lines for activating an experience of a life with a purpose during the rehabilitation programme of the drug dependent patient. A qualitative model of research using an explorative and descriptive contextual study was used. By using a non-probable convenience selection method, 15 voluntary drug dependent patients were defined as units of analysis in order to determine the extent of their subjective experience of their purpose in life, using a semi-structured interview with the help of the "Purpose in life Test". The units of analysis complied with the criteria for drug dependency and were studied within the given context, i.e. the short term unit inside the hospital environment. Data obtained, after completing the instrument of measurement, was processed using the point allocation system of the attitude scale in the first section, a coding and frequency analysis of important words in the second section, and the phenomenological method of Giorgi in the third section. The results indicated that 14 out of the 15 units of analysis experienced their purpose in life as weak. From these results a programme for the activating of purpose in life experience was proposed and implemented on a single drug dependent patient who was selected as a case study. The data obtained during the presentation of the programme consist of summaries made by the therapist during the course of each session, and independent evaluations of the therapist and the patient.

Adult↗

PubMed1995

[Familial differentiation, individualization, and sexuality in early adolescence: exploratory study].

This preliminary study, a qualitative one, explores the manifestations of family differentiation, individuation and sexuality in early adolescence. More specifically, it examines the expression of: (1) separation to parents; (2) intimate investment to peers; (3) identity and sexual quests in early adolescence and it investigates the manifestations of sexual dimorphism in these area. A semi-structured interview was administered to 10 francophones subjects (5 boys; 5 girls), 12-15 years old, living in Montreal suburbs. The results show for example that the integration of intimacy and sexual needs seem to be more conflictual for boys than for girls. For the girls, the needs to separate herself from family seem more difficult to integrate to her needs of intimacy with peers. Future research are needed to go beyond the limitations of the actual research.

Adolescent↗

PubMed1992

Caring for people with AIDS: nurses' attitudes and feelings.

A qualitative, non-experimental study was conducted to identify the feelings and attitudes that nurses associate with caring for people with AIDS. Data collection and analysis were guided by the phenomenological method. Cognitive dissonance theory served as the theoretical framework to view the experience of caring for someone with AIDS. Data analysis of audiotaped, semi-structured interviews resulted in the identification of six mutually inclusive as well as exclusive themes which represent the attitudes and feelings of nurses: fear, anger, sympathy, self-enhancement, fatigue and helplessness. Particularly evident were differences in the way respondents perceived and treated AIDS patients who are intravenous drug users and those who are homosexuals.

Acquired Immunodeficiency Syndrome↗

PubMed2026

IMPROVE kidney care: perspectives from marginalised people with CKD and risk factors for CKD on access to, and experience of, kidney care services: a cross-sector collaborative exploration, employing qualitative approaches.

BACKGROUND: Access to, and experience of, chronic kidney disease (CKD) care is inequitable-with barriers to accessing quality care for marginalised groups. We conducted an exploratory study employing qualitative approaches to understand the factors that influence access to, and experience of, healthcare services for marginalised people with CKD and at risk of CKD. METHODS: An exploratory study employing qualitative approaches was conducted as a cross-sector collaboration between kidney care services and an activist, antiracist community-based research and social justice organisation (Mabadiliko Community Interest Company (CIC)). Two groups were recruited: 1) those with risk factors for CKD or early-stage CKD, and 2) people who presented late to kidney care services. Semi-structured interviews were co-designed with people with lived experience and conducted by Mabadiliko CIC. Thematic analysis was undertaken, with themes refined by participants. RESULTS: Twenty interviews were undertaken with a diverse cohort of participants. Knowledge and awareness of CKD was limited, and compounded by a lack of delivery of accessible, culturally congruent information. Significant barriers to accessing kidney care exist for marginalised people, including people who are from global majority ethnic backgrounds, Disabled people, and/or people experiencing material hardship. These barriers are compounded by interpersonal discrimination and paternalistic power dynamics within healthcare interactions. CONCLUSION: This study captures the experiences of marginalised people at different stages of their journey with CKD, in accessing and engaging with kidney care services. Participants faced a complex array of challenges, highlighting opportunities for multi-level intervention. We outline recommendations to address these issues, co-developed with participants.

chronic kidney disease↗

PubMed1986

The nature of the abnormal perceptual experiences at the onset of schizophrenia.

Sixty schizophrenics and 40 depressives in remission from the floridly psychotic phase were given a semi-structured interview concerning their abnormal perceptual experiences at the onset of their illness. About 50% of each set of subjects had experienced an alteration in the quality of their perception. However, there was a fairly characteristic pattern in each case: emotional tainting of the world around, a sense of unreality and noise sensitivity in depression; and an indefinable, qualitative change in visual perception, particularly affecting the way colours, people, space and facial expression were viewed, in schizophrenia. Of the various theories which have been put forward to explain perceptual change in schizophrenia, a breakdown in gestalt appeared to explain these findings best.

Auditory Perceptual Disorders↗

PubMedDate not supplied

Self-perceptions of aging across cultures: myth or reality?

This study attempted to correct the methodological shortcomings of previous studies by using semi-structured interviews to explore the differences and similarities of self-perceptions of aging and associated factors among Anglo Americans, Chinese Americans, and Chinese in Taiwan. Each of the three subgroups consisted of twenty middle- or lower-class female community residents who were sixty to seventy-five years of age. The results of both quantitative and qualitative analyses reveal that all three subgroups had positive self-perceptions of aging, with Anglo Americans being most positive; Chinese Americans, the next; Chinese in Taiwan, the least. Correlates of self-perceptions of aging for each subgroup are presented. Implications for practice, policy, program development, and service delivery are also discussed.

Aged↗

PubMed2025

Development and evaluation of patient-centred polygenic risk score reports for glaucoma screening.

BACKGROUND: Polygenic risk scores (PRS), which provide an individual probabilistic estimate of genetic susceptibility to develop a disease, have shown effective risk stratification for glaucoma onset. However, there is limited best practice evidence for reporting PRS and patient-friendly reports for communicating PRS effectively are lacking. Here we developed patient-centred PRS reports for glaucoma screening based on the literature, and evaluated them with participants using a qualitative research approach. METHODS: We first reviewed existing PRS reports and literature on probabilistic risk communication. This informed the development of a draft glaucoma screening PRS report for a hypothetical high risk individual from the general population. We designed three versions of the report to illustrate risk using a pictograph, a pie chart and a bell curve. We then conducted semi-structured interviews to assess preference of visual risk communication aids, understanding of risk, content, format and structure of the reports. Participants were invited from an existing study, which aims to evaluate the clinical validity of glaucoma PRS among individuals > 50 years from the general population. Numeracy and literacy levels were assessed. RESULTS: We interviewed 12 individuals. The cohort was highly educated (42% university education), all were European and 50% were female. Numeracy (mean 2.1 ± 0.9, range 0 to 3), graph literacy (mean 2.8 ± 0.8, range 0 to 4) and genetic literacy (mean 24.2 ± 6.2, range - 20 to + 46) showed a range of levels. We analysed the reports under three main themes: visual preferences, understanding risk and reports formatting. The visual component was deemed important to understanding risk, with the pictograph being the preferred visual risk representation, followed by the pie chart and the bell curve. Participants expressed preference for absolute risk in understanding risk, along with the written content explaining the results. The importance of follow-up recommendations and time to glaucoma onset were deemed important. Participants expressed varied opinions in the level of information and the colours used, which informed revisions of the report. CONCLUSIONS: Our study revealed preferences for reporting PRS information in the context of glaucoma screening, to support the development of clinical PRS reporting. Further research is needed to assess PRS communication in other groups representative of target populations and with other target audiences (e.g. referring clinicians), and its potential psychosocial impact in the wider community.

Humans↗

PubMed2026

A Qualitative Analysis of Cancer Survivors' Experience in a Time-Restricted Eating vs Control Clinical Trial to Address Cancer-Related Fatigue.

PURPOSE: To describe cancer survivors' lived experiences in a clinical trial that tested an individualized nutrition counseling with or without time-restricted eating to address cancer-related fatigue. METHODS: The Fatigue REDuction After cancer study was a two-arm, randomized controlled trial. Participants were adult cancer survivors who were 2 months to 2 years post-treatment. All participants received individualized nutrition counseling; those in the time-restricted eating group self-selected a consistent 10-hour eating window for 12 weeks. After the study, semi-structured exit interviews were conducted to gauge participants' experiences in the trial. Interviews were transcribed and two independent coders thematically analyzed the interviews using inductive and deductive coding. NVivo software was used for data organization and analysis. RESULTS: Participants (n = 24; TRE = 11; Control = 13) were 55 ± 13 years old, 75% were female, and they had a variety of cancer types. The majority of participants found that being in the study helped them to set and achieve lifestyle goals and would therefore recommend the study to others. Participants in the time-restricted eating group noted that time-restricted eating helped them set a better routine, providing a positive sense of control. However, some noted difficulty switching to a 14-hour fasting schedule, as it can interfere with their regular routine or employment schedules. Many participants noted they were happy that cancer-related fatigue was gaining more attention, hoping to find solutions for persistent cancer-related fatigue. CONCLUSION: The majority of participants found the study useful and, regardless of their group assignment or the intervention's impact on their fatigue, found the study helped them to gain better control of their dietary habits.

Humans↗

PubMed1995

Child and adolescent psychiatry placement in specialist psychiatric training: a regional study.

Before beginning higher professional training in one of the subspecialties, all psychiatry trainees must complete a general professional psychiatric training. At this stage, some but not all will undertake a clinical placement in child and adolescent psychiatry. Fifty-seven trainees who had completed one of the 15 child and adolescent psychiatry placements in a Regional Health Authority, took part in a semi-structured telephone interview. The trainees were asked to compare the child and adolescent psychiatry placement with a general adult psychiatry placement with respect to the training received in a number of areas. These areas were considered to be important to psychiatrists of all future subspecialties and included: assessment, communication, psychological interventions and psychological theories. In addition, subjects were asked about their general professional training as a whole and the role that child and adolescent psychiatry placements should play. The interview included quantitative and qualitative components. The findings suggest that child and adolescent psychiatry placements can make a significant contribution to a number of important areas of general professional development and that there would be considerable support for strengthening the role of such placements in psychiatry training.

Adolescent Psychiatry↗

PubMed2025

Underrepresented populations in genomic research: a qualitative study of researchers' perspectives.

BACKGROUND: The lack of diversity in genomic data limits researchers' ability to investigate the relationships between genetic profiles, disease manifestations, and responses to new therapies. As a result, innovations in treatment could have potentially harmful effects on a significant portion of the population due to incomplete or inaccurate genomic data. In addition, the lack of harmonization in the use of population descriptors in genomic studies raises both ethical and scientific concerns regarding which descriptors should be used to study and recruit underrepresented populations. Therefore, understanding the factors contributing to the lack of diversity in genomic research is an urgent scientific, clinical, and public health priority. This study aims to explore the social and contextual factors influencing the participation of underrepresented populations in genomic research, from the perspective of researchers in the field. METHODS: A total of 13 semi-structured interviews were conducted with researchers experienced in genomic research in Canada and fluent in either French or English. The interview transcripts were analyzed using thematic analysis. RESULTS: Researchers identified several factors contributing to the low participation of underrepresented populations in genomic research, with one key factor being the geographic distribution of research institutions and the disconnect between research efforts and the communities being studied. To address this issue, participants stressed the importance of moving away from colonial practices, such as conducting research on a community without consulting its members in the design phase. Furthermore, it was suggested that existing diversity, equity, and inclusion policies alone were insufficient to effectively address the challenge. Lastly, the study also highlighted a potential link between how study populations are categorized and the willingness of underrepresented groups to participate in genomic research. CONCLUSION: Although researchers are generally aware of the literature on the causes, consequences, and potential solutions for increasing participation, confusion remains regarding the use of population descriptors. Our findings highlight the need for improved education, greater consensus, and expanded dialogue within the genomic research community to promote the harmonization of population descriptors.

Humans↗

PubMed1991

Cognitive factors influencing women to seek care during pregnancy.

To assess the relationship of cognitive factors to a pregnant woman's decision to seek prenatal care, a semi-structured interview instrument was administered to 30 women soon after they were seen for care. A content analysis of interview transcripts was performed to identify variables affecting the decision to seek care. Variables were coded numerically, and those correlated with number of weeks gestation at first visit for pregnancy care were entered into a stepwise linear multiple regression model. Three variables accounted for 74% of the variance in the week of gestation at which pregnancy care began. Women who desired the pregnancy, wished confirmation of the pregnancy, and experienced pregnancy-related symptoms tended to seek care earlier. Results were discussed in terms of the usefulness of this integration of quantitative and qualitative methods for the study of factors related to seeking pregnancy care and the need to consider cognitive factors when designing programs to improve the delivery of prenatal care.

Adolescent↗

PubMedDate not supplied

'Breathtaking': the consequences of chronic respiratory disorder.

Chronic obstructive airways disease (COAD) is a major, though neglected, medical and social problem in the United Kingdom today. Dyspnoea is one of the most distressing and disabling symptoms of COAD, which is itself the largest single cause of absence from work in the United Kingdom. This paper reports on 92 patients suffering from COAD, who were interviewed in order to assess impairment, disability and handicap, and a smaller subsample of 24 of these patients who were followed-up using open-ended, semi-structured, tape-recorded interviews in order to cover in more detail some of the issues raised in the first quantitative stage of the study. Low correlations were found between lung function and disability (-0.38 p less than 0.001), accounting for only 14% of the variance, and high correlations between measures of dyspnoea and disability (-0.90 p less than 0.001). Major areas of disability and handicap included: household management, ambulation, sleep and rest, recreation and pastimes, and work. Financial problems and difficulties, housing problems and problems of social isolation were also frequently reported. The paper then attempts to explore the relationship between impairment, disability and handicap, drawing on both the quantitative and qualitative data collected in order to illustrate the variable nature of this relationship. The paper concludes by suggesting both the need for a more integrated approach to the care and rehabilitation of COAD patients and their families, and for a complementary social perspective and approach to COAD and its treatment.

Activities of Daily Living↗

PubMed2025

A Qualitative Study of the Roles and Responsibilities of Academic and Journalistic Publishing in Social and Behavioral Genomics.

The conduct and translation of scientific research is shaped by academic and journalistic publishing. Academic journals issue editorial guidelines and policies that inform how researchers shape and present their studies. Journalists select and report on academic studies for public audiences. Despite the potential importance of journal editors and journalists in the scientific process, little has been done to examine how these groups think about their roles and responsibilities-especially when it comes to ethically sensitive scientific domains like social and behavioral genomics (SBG): the study of whether and how genetic differences between individuals correlate with differences in behaviors such as aggression and outcomes such as educational attainment. To begin filling this gap, we conducted semi-structured interviews with editors working at academic journals that publish SBG research (n = 10) and journalists who have reported on SBG studies (n = 13). Journal editors largely saw themselves as mediators between authors and peer reviewers who help to shepherd along research. Journalists frequently described themselves as translators of science for wide audiences; at times they also saw themselves as interrogators of science. While both groups considered SBG especially ethically sensitive and prone to risks such as misinterpretation, many expressed that systematic ethical review processes and guidelines for SBG are lacking. Further, many deferred the ethical responsibility to minimize risks associated with SBG to others. Our findings highlight the need for more explicit frameworks in academic and journalistic publishing to support the ethically responsible conduct and communication of SBG.

ELSI↗

PubMed2026

Development and pilot testing of a prostate cancer polygenic risk report.

BACKGROUND: Polygenic risk scores (PRS) are increasingly being incorporated into clinical care, yet optimal strategies for communicating PRS results to patients and clinicians remain undefined. Effective report design is critical to ensure comprehension and appropriate use, particularly for complex conditions such as prostate cancer where screening decisions are nuanced. We developed and pilot tested patient-facing materials to communicate integrated polygenic and monogenic risk for prostate cancer in the context of a randomized clinical trial. METHODS: We designed a summary report and accompanying Frequently Asked Questions (FAQ) page to communicate prostate cancer genetic risk within the Prostate Cancer, Genetic Risk, and Equitable Screening Study (ProGRESS). Materials were developed through an iterative, multidisciplinary process informed by existing literature on genomic risk communication. We conducted semi-structured interviews with a national sample of eight men eligible for prostate cancer screening to evaluate comprehension, interpretation of visual elements, perceived usefulness, and preferences for improvement. Interviews were transcribed and analyzed using reflexive thematic analysis. RESULTS: Participants generally found the summary report and FAQ page understandable and visually engaging. Graphical displays of absolute risk, particularly pictograph arrays, facilitated comprehension and helped contextualize risk. Visual cues such as color and bold formatting effectively directed attention to key information, with red coloring perceived as particularly salient for high-risk results. In contrast, more complex visualizations, including bell curves and incidence curves, were frequently misunderstood or not interpreted as intended. Participants expressed a desire for clearer guidance regarding next steps and additional accessible information, suggesting supplementary resources such as hyperlinks or QR codes. Concerns about readability included small font size and high text density. CONCLUSIONS: In this qualitative pilot study, patient-facing materials for communicating prostate cancer PRS were generally well received, with specific design features such as simple visualizations and clear formatting enhancing understanding. Findings highlight the importance of intuitive risk displays and actionable guidance in PRS reporting. These results provide practical insights to inform the design of genomic risk reports as PRS-based prostate cancer screening approaches move toward clinical implementation. TRIAL REGISTRATION: ClinicalTrials.gov NCT05926102; date of registry: July 3, 2023.

Aged↗

PubMed2026

Toward personalized interventions for preventing depression in primary care: Qualitative and quantitative findings from the e-predictD pilot study.

BACKGROUND: The predictD intervention, delivered by family physicians (FPs), has demonstrated effectiveness and cost-efficiency in preventing depression and anxiety. The e-predictD study aims to design, develop, and evaluate a novel personalized intervention for depression prevention by integrating information and communication technologies (ICTs), risk prediction algorithms, and decision support systems (DSS) for both patients and FPs. OBJECTIVE: To evaluate the satisfaction, usability, and acceptability, of a beta version of the e-predictD intervention in primary care settings. METHODS: The e-predictD intervention follows a biopsychosocial approach, including an initial patient-FP interview, specific FP training, and an app. A β-version was tested in a pilot study without a control group over three months. The app integrates a validated depression risk prediction algorithm, decision algorithms, and a monitoring system supporting the DSS. The DSS generates a personalized prevention plan (PPP) from eight intervention modules: physical exercise, social relationships, problem-solving, communication skills, decision-making, assertiveness, sleep improvement, and cognitive restructuring. Patients and FPs discussed the PPP in a 15-minute baseline interview, selecting modules for implementation over three months. Semi-structured interviews gathered feedback. Assessments included depression (PHQ-9), anxiety (GAD-7), quality of life (SF-12), and major depression risk (predictD algorithm). RESULTS: Six FPs from six Spanish cities enrolled 56 non-depressed patients at moderate-to-high risk of depression; 47 (84%) completed follow-up. The app was used for a median of six days (interquartile range: 1-30). Both FPs and patients expressed satisfaction, leading to incorporated improvements. After three months, significant reductions in major depression risk and anxiety symptoms were observed, alongside improved mental quality of life. However, no significant changes were found in depressive symptoms or physical quality of life. CONCLUSION: This pilot study supports the feasibility and acceptability of the e-predictD β-version, despite lower-than-expected app usability. Health improvements were observed, warranting confirmation in a randomized controlled trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT03990792.

Adult↗

PubMed1995

Nurses' definitions of and attitudes towards euthanasia.

A major impetus for this study was recent literature that assumed that nurses' definitions of euthanasia and consequent opinions on decision making are unproblematic. The purpose of this study was to identify nurses' definitions of and attitudes towards euthanasia. Ten semi-structured interviews were conducted with nurses working in a variety of clinical practice settings. The majority of nurses could distinguish between active and passive euthanasia, but it was only in terms of active euthanasia that the debate was seen as significant. It was considered that the term passive euthanasia, particularly in relation to withdrawal of treatment, has served to confuse the real debate centring around active euthanasia. Only two participants were in favour of active euthanasia, but emphasized the need for 'a community of shared responsibility' in decision making. The major finding of the study was the commitment of all participants to caring for and ensuring the comfort of the dying patient. The concepts of ordinary and extraordinary forms of treatment and heroic measures were seen as worthy of debate in the context of dying with dignity rather than of euthanasia. There was an associated aversion to inappropriate heroic measures, which were perceived as prolonging death and interfering with 'dying with dignity'. The development of a personal and moral/ethical stance (in relation to euthanasia) was shown to be an evolving process embedded in a caring philosophy and emphasizing the contextual nature of providing appropriate care.

Adult↗

PubMed2025

Caregiver experiences after the death of a person with dementia with Lewy bodies: A mixed-methods analysis.

BackgroundDementia with Lewy bodies (DLB) is a common degenerative dementia, but no studies investigate bereaved caregiver experiences.ObjectiveTo investigate the experiences of caregivers three months after the death of persons with DLB using a mixed-methods approach.MethodsDyads of individuals with moderate-advanced DLB and their primary informal caregivers were followed prospectively every 6 months until the person with DLB died. Caregivers completed a study visit with questionnaires and a semi-structured interview ∼3 months later. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of post-death measures with pre-death patient and caregiver variables. Thematic analysis was used to analyze the interviews.ResultsSeventy-three caregivers completed visits (mean 3.5 months post-death). Most of the caregivers were women (82.2%) and spouses (76.7%) or adult children (17.8%). Over 40% had scores indicating risk for clinical depression. Post-death caregiver experiences (depression, quality of life, grief, resilience) correlated with pre-death caregiver experiences. Post-death experiences did not associate with patient characteristics, disease-related symptoms, or healthcare services used in the last 6 months of life. Trajectories for caregiver measures from pre- to post-death visits varied widely. Interview themes included grief and sadness, anger, guilt and regret, relief, appreciation/gratitude, and adjusting to a new normal.ConclusionsThe finding that pre-death caregiving experiences have the strongest association with post-death experiences emphasizes the critical importance of accessible and evidence-based caregiver support before and after the death of a person with DLB. Research is needed to develop interventions for current and bereaved caregivers of individuals with DLB.Trial registration informationNCT04829656 (submitted 2021-03-22).

Caregivers↗