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PubMed2006

Recovery after coronary artery bypass grafting: patients' and health professionals' views of the hospital experience.

BACKGROUND: Increasing access to revascularisation procedures is a key aspect of a National Service Framework. Coronary artery bypass grafting (CABG) is effective in relieving symptoms and reducing mortality but some patients do not report an improved quality of life or experience a good recovery. AIMS: To describe the recovery trajectory after CABG and identify facilitators and barriers to recovery. METHODS: Semi-structured interviews were conducted with 11 patients who had previously undergone elective, isolated, first-time CABG and with 10 health professionals experienced in caring for these patients. RESULTS: Thematic analysis identified the following themes: definition and timeline of recovery, preparation for surgery including information provision, attitude to surgery and confidence in staff, clinical factors and the in-patient experience. The key finding is the different recovery trajectory between patients with severe versus mild pre-operative symptoms; patients with few pre-CABG symptoms reported a much longer recovery time. CONCLUSIONS: This study has provided insights into the barriers and facilitators to recovery after CABG and the processes involved. Findings have indicated areas where health professionals can intervene to aid patients' long-term recovery and thereby maximise the benefits of CABG.

Aged↗
PubMed2006

Fertility issues: the perceptions and experiences of young men recently diagnosed and treated for cancer.

PURPOSE: To explore fertility issues for young men who had been diagnosed and treated for cancer and to examine communication problems surrounding these fertility issues. METHOD: Narrative interviews were conducted with 21 young men previously treated for cancer in the United Kingdom. Eighteen talked about fertility issues at some length. A qualitative interpretive approach was taken, combining thematic analysis with constant comparison. RESULTS: Communication about sperm storage was sometimes difficult and embarrassing. Young men wanted the opportunity to bank their sperm but decisions were often rushed. Some would have appreciated counseling and were unprepared for the process of sperm banking and criticized facilities. Uncertainty about fertility status caused worries for the future. CONCLUSIONS: More still needs to be done to help young men with cancer to address issues of fertility. All adolescents and young men treated for cancer should be offered sperm banking if their fertility may be affected. They should be offered counseling at every stage by professionals who feel comfortable talking about the subject. Interactive, educational CD-ROMs or websites may be useful. Physical facilities for sperm banking should be improved.

Adolescent↗
PubMed2026

Effectiveness and usability of artificial intelligence-powered assistive technologies in Supporting daily activities of children with cerebral palsy: a systematic review.

BACKGROUND: Cerebral Palsy (CP) is the main cause of motor disabilities in childhood, necessitating innovative approaches to rehabilitation and assistive technology (AT). Simultaneously, artificial intelligence (AI) is increasingly being integrated into devices to create more adaptive, personalized, and effective AT. This systematic review aimed to evaluate the effectiveness and usability of AI-powered assistive technologies designed to support daily activities and rehabilitation in children with CP. MATERIALS AND METHODS: Five databases, including Scopus, Web of Science, PubMed, Embase, and IEEE Xplore, were systematically searched, and 23 articles were included in the final analysis. Articles were identified, selected, and categorized into emerging thematic areas based on the primary function and application of the technology. RESULTS: Five key thematic topics were identified: 1) AI-driven motor rehabilitation and gait training for functional mobility; 2) intelligent assessment and monitoring systems for clinical decision support; 3) AI-supported communication, social interaction, and intention recognition tools; 4) gamified and virtual reality-based interventions to enhance engagement and usability; and 5) smart assistive systems supporting daily living and independent mobility. The findings demonstrate a strong trend toward the application of AI technologies in personalized, engaging, and data-driven interventions for children with CP. However, the field is predominantly in the proof-of-concept stage, with limitations including small sample sizes, lack of long-term clinical validation, challenges in user-centered design, and usability for children with CP. CONCLUSION: AI-powered assistive technologies hold significant potential for transforming the care of children with CP by enabling highly personalized and engaging interventions. To actualize this potential, future work must realize that practical application remains challenging owing to limited clinical validation, technological integration, and usability barriers for children with CP. Future research must prioritize user-centered design and multidisciplinary collaboration to ensure that AI and robotic advancements improve the usability and quality of life for children with CP.

Humans↗
PubMed2006

Research as a therapeutic experience? An investigation of women's participation in research on ending IVF treatment.

BACKGROUND: Women participate in research for many reasons, some of them therapeutic. This paper retrospectively analyses women's motivations for participating in a study on decision making at the end of in vitro fertilization (IVF) treatment. METHODS: A mixed methods study conducted by a practising midwife had focused on women's experiences of stopping IVF treatment after one or more unsuccessful attempts, and raised awareness of women's motivations for participating. Thematic analysis of interview transcripts permitted issues raised by the participants in the context of 'research as a therapeutic experience' to be explored. RESULTS: Reasons for participating in the study included: (1) altruism; (2) appreciation/gratitude for care received; (3) the need to debrief; and (4) gaining self-awareness and readjustment, which challenged the acceptance of childlessness. Reasons for using the research study as 'a therapeutic experience' in the context of failed IVF may be attributed to: (1) access to direct clinical care and advice; (2) opportunity for self-reflection and rationalization; (3) acceptance of reality; (4) resolution of conflict; and (5) opportunity to unburden themselves. CONCLUSION: Women appeared to use the interview process to reassure themselves about decisions made, and to seek direct clinical advice on whether to continue IVF using donor gametes.

Adult↗
PubMed2005

Parent identity and 'virtual' children: why patients discard rather than donate unused embryos.

BACKGROUND: Many patients prefer to donate unused embryos when surveyed. However, it is a source of frustration and curiosity that clinical audits of embryo outcomes show the majority changed their minds. In many clinics, the number of recipients continues to outweigh the number of donors. To plan effective counselling practices, it is important to understand the dynamics of decision-making for patients when determining outcomes for unused embryos. METHODS: Twelve couples and nine women (n = 33) who had discarded unused embryos were interviewed using a narrative structure and various interview techniques. Interview transcripts underwent qualitative analysis through which data were grouped thematically according to similarities. Differences were also examined. RESULTS: Participants described their initial choice to donate embryos as an idealistic plan rather than a purposeful decision. Their change of mind was due to two factors: (i) a change in their standpoint from a childless couple to parents; and (ii) a change in the symbolism of the embryo from representing a chance to become pregnant to representing a 'virtual' child in cryo-storage. The meaning of embryo donation was likened to child relinquishment. CONCLUSION: Counselling and social policy need to take account of the symbolism of the embryo and reform current practices.

Cryopreservation↗
PubMedDate not supplied

Context and beliefs about smoking and smoking cessation.

PURPOSE: To describe the context of, and beliefs about, smoking cessation in a sample of low-income African American pregnant women. STUDY DESIGN & METHODS: A naturalistic descriptive qualitative approach was used with 15 women. Face-to-face interviews were conducted using a semi-structured interview guide. Interviews were transcribed verbatim and a thematic content analysis conducted. Perinatal health complication data were extracted from the participants' medical records and summarized. RESULTS: Two major themes were identified. The context of smoking cessation theme was Living the Stressful Life, with subthemes of Personal and Community Stress, Personal Health Problems, and Smoking For Stress Management. The second major theme was Personal Accountability for Smoking Cessation. There was a mismatch between women's sources of stress (which were out of their control) and their perceived locus of change (which was personal behavior). CLINICAL IMPLICATIONS: To improve the outcomes of tobacco control programs for low-income women, we need to take action to create healthier communities.

Adaptation, Psychological↗
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↗
PubMed2005

What is eHealth (5): a research agenda for eHealth through stakeholder consultation and policy context review.

BACKGROUND: In 2003, the National Health Service in England and Wales, despite its large investment in information and communication technology, had not set a national research agenda. The National Health Service has three main research and development programs: one is the Service Delivery and Organisation program, commissioned in 2003, and the others are two parallel "scoping exercises" to help set a research agenda. This paper reports on one of those projects. A parallel literature review was carried out by others and has been reported elsewhere. OBJECTIVE: The objective was to explore the concerns of stakeholders and to review relevant policy in order to produce recommendations and a conceptual map of eHealth research. METHODS: There were two parallel strands. For the stakeholder consultation, 37 professionals representing 12 "stakeholder" groups participated in focus groups or interviews. Discussion was prompted by eHealth "scenarios" and analyzed using thematic content analysis. Subsequently, 17 lay participants, in three focus groups, discussed and prioritized these themes. For the policy review, 26 policy makers were interviewed, and 95 policy documents were reviewed. Recommendations were subsequently reviewed in a conference workshop. Recommendations for research from both strands were combined into a conceptual map. RESULTS: Themes from stakeholder consultation and policy review were combined as 43 recommendations under six headings. Four of these headings (using, processing, sharing, and controlling information) describe the scope of eHealth research. The other two relate to how research should be carried out (ensuring best practice is first identified and disseminated) and to the values considered important by stakeholders (in particular, measuring improvement in health). CONCLUSIONS: The scope of eHealth research (using, processing, sharing, controlling information) derived empirically from this study corresponds with "textbook" descriptions of informatics. Stakeholders would like eHealth research to include outcomes such as improved health or quality of life, but such research may be long term while changes in information technology are rapid. Longer-term research questions need to be concerned with human behavior and our use of information, rather than particular technologies. In some cases, "modelling" longer-term costs and benefits (in terms of health) may be desirable.

Delivery of Health Care↗
PubMed1994

Helping factors in a peer-developed support group for persons with head injury, Part 1: Participant observer perspective.

OBJECTIVES: An ethnographic study of a peer-developed support group for persons with head injury was conducted to identify helping factors. These factors are the peer group experiences and processes, established theoretically and empirically, that provide support through self-help. METHOD: The group comprised 13 members who regularly attended sessions for 16 months. In addition to participant observation, the data included audiotapes and videotapes of the group. The data were subjected to thematic analysis to find patterns in the participants' experience with regard to group helping factors. RESULTS: Many of the positive attributes of the group seem similar to processes found in successful peer support groups. These attributes include believing and feeling part of the group because members have a common problem and can validate the effects of the injury by sharing and receiving information in a variety of ways through the group. CONCLUSION: Legitimization, the acceptance of the head injury itself as real, appears to be the fundamental concept that distinguishes this group from other problem-focused self-help groups and professionally led groups.

Adult↗
PubMed2000

Correspondence between delusions and personal goals: a qualitative analysis.

OBJECTIVES: This pilot study describes a qualitative method for exploring delusions in terms of motivational themes. DESIGN: A semi-structured interview schedule was developed on the basis of an elementary conceptual frame specifying research questions. The analysis of each case uses a structured format. Triangulation was used to check: (i) reliability of motive categories; (ii) their consistent application to delusions. METHODS OF ANALYSIS: All patients had delusions and were diagnosed as having a psychotic disorder. Two types of analysis were used: (i) Interpretative phenomenological analysis with features of grounded analysis was used to classify motives. Data from 14 participants was used for this. (ii) The second phase was an examination of a possible correspondence of themes and involved: (a) a category-led thematic analysis of the delusion in terms of motivations; (b) a category-led thematic analysis of life goals and problems again in terms of motivations; and (c) an examination of correspondence between (a) and (b). RESULTS: The classification of goals and difficulties suggested six main categories: social connection; competence; experiential base (i.e. states of mind and body); material base (e.g. housing); direction; and evaluation (i.e. how a person evaluates himself or believes others evaluate him). Four cases are presented, each exploring the correspondence of themes. CONCLUSION: The methods of analysis seemed coherent and useful. In the cases presented, the delusions appeared to relate to fundamental concerns in a person's life.

Adult↗
PubMed2005

Geographic information system method for assessing chemo-diversity in medicinal plants.

The spatial distribution of wild germplasm of Podophyllum peltatum L. (American mayapple) has been analyzed using the Geographic Information System (GIS) with the objective to develop a method and a database for evaluation of biotic and abiotic factors influencing drug yield, and to map elite genotypes for propagation and improvement. The field assessment followed a standard procedure including geographical coordinates of each accession, leaf biomass randomly harvested, identification of associate species, collection of herbarium specimen, soil sample and digital pictures of the site. By overlaying morphological and chemical data with geomorphic information, a thematic map was created locating the podophyllotoxin-rich accessions and the uniqueness of each site was recorded for post-collection analysis. This work has enabled the establishment of a database of P. peltatum germplasm in Mississippi with drug yield linked to spatial locations for rational utilization of our natural resources. While this method integrates information of well-characterized diverse in situ P. peltatum germplasm, it might become a strategy for curators to reduce cost for establishing and maintaining ex situ collections since the genetic material is geo-referenced.

Databases, Factual↗
PubMed2005

Sexual violence and youth in South Africa: the need for community-based prevention interventions.

OBJECTIVES: South Africa is reported to have one of the highest rates of sexual violence in the world, with adolescent girls between the ages of 12-17 being particularly at risk. Given that adolescence is considered a critical developmental period for establishing normative sexual behavior, this study explored multiple levels of risk influences that render adolescent girls vulnerable to becoming victims of sexual violence and adolescent boys vulnerable to becoming perpetrators of such abuse in one South African community. METHOD: A case study approach using qualitative rapid focused ethnographic methods was used. This involved 10 focus group interviews and 10 individual interviews with a volunteer convenience sample of adolescent boys and girls between the ages of 14 and 16 years. RESULTS: Inductive thematic analysis revealed that there were indeed multiple levels of risk influences for adolescent girls and boys becoming either victims or perpetrators of sexual violence. Using the Theory of Triadic Influence as a framework, influences at the distal socio-cultural/environmental level included traditional notions of masculinity and normalization of inter-personal violence as well as poverty and the commodification of sex leading to rape supportive attitudes. Influences at the proximal situation context/social normative level included high-risk social norms as well as a weak adult and community protective shield. Finally, influences at the intra-personal level included low self-esteem and self-efficacy as well as inter-personal affective anger. CONCLUSION: Given the multiple levels of risk influences that need to be addressed to protect youth from becoming either perpetrators or victims of sexual violence in the South African context, prevention programs should necessarily be comprehensive, developmentally timed, and community-based.

Adolescent↗
PubMed1998

The brain tumor experience and quality of life: a qualitative study.

Despite the attention given to quality of life (QOL) in persons with cancer, very little is currently know about QOL in persons with brain tumors. In the past twenty years, less than twenty articles reflect the actual measurement of QOL in adult brain tumor population. The shortage of QOL studies is disturbing considering the slow progress made in extending the life expectancy of many brain tumor patients and the toxicities of many existing treatment protocols. This qualitative study was undertaken to begin to fill the gaps in the existing literature and to more clearly define QOL in persons with brain tumors. The researchers used an exploratory, descriptive design involving semi-structured interviews of adults with brain tumors and their significant others. Twenty-three adults with brain tumors and 21 significant others were interviewed. Data analysis of interview transcripts focused on the identification of key variables contributing to the QOL of adults with brain tumors. Using constant comparative methods, it was found that data could be organized into five thematic categories: (1) The Stigma of a Mind-Body Illness, (2) An Invasive Disease of the Self, (3) My Family has a Brain Tumor, (4) Dealing with the Medical Diplomats, and (5) Quality of Life: No Substitute for Living. These emerging themes provide information which clinicians caring for brain tumor patients can use to provide care and anticipatory guidance. Unique areas for further research elicited in the study include exploration of the "loss of self" theme, how persons use their estimations of QOL in decision-making and examination of the balance between the need for survival and maintaining QOL.

Adaptation, Psychological↗
PubMed2006

Clinical experiences of students with dyslexia.

AIM: This paper reports a study exploring the clinical experiences of student nurses with dyslexia and its potential influence on their practice. BACKGROUND: Widened access to university education has meant an increase in the number of students with dyslexia. A limited number of studies have explored the academic experiences of dyslexic student nurses. However, nursing students in the United Kingdom spend 50% of their programme in practice settings, and there are no studies detailing their clinical experiences. METHOD: This qualitative exploratory study involved tape-recorded interviews with a convenience sample of 18 nursing students with a formal dyslexia diagnosis. Data were collected in 2003-2004 and were analysed using thematic analysis. FINDINGS: Participants described a number of personalized approaches to managing their difficulties in practice. Whilst many of these may be useful to non-dyslexic students, descriptions of, for example, avoiding answering the telephone, were inappropriate. Some participants contended with discrimination and ridicule, often choosing not to disclose their disability. Less acute clinical environments appeared to provide more satisfying working experience, and this factor may be influential in shaping future career options. Participants valued more time and an undisturbed place to complete clinical documentation. Heightened self-awareness promoted patient safety as the major concern for study participants. Positive aspects of dyslexia were never raised or acknowledged by participants. CONCLUSION: The clinical setting provides a challenging environment for nursing students with dyslexia, who find personalized ways to manage their disability. A dyslexia diagnosis continues to carry a stigma that may result in non-disclosure, with implications for the level of support available. Greater awareness of the practice-specific needs of such students is required to ensure appropriate support and public safety.

Adaptation, Psychological↗
PubMed2006

Residential aged care: the last frontier for palliative care.

AIM: This paper is a report of an explorative study describing the perceptions and beliefs about palliative care among nurses and care assistants working in residential aged care facilities in Australia. BACKGROUND: Internationally, the number of people dying in residential aged care facilities is growing. In Australia, aged care providers are being encouraged and supported by a positive policy platform to deliver a palliative approach to care, which has generated significant interest from clinicians, academics and researchers. However, a little is known about the ability and capacity of residential aged care services to adopt and provide a palliative approach to care. METHODS: Focus groups were used to investigate the collective perceptions and beliefs about palliative care in a convenience sample of nurses and care assistants working in residential aged care facilities in Australia. Thematic content analysis was used to analyse the data, which were collected during 2004. RESULTS: Four major themes emerged: (1) being like family; (2) advocacy as a key role; (3) challenges in communicating with other healthcare providers; (4) battling and striving to succeed against the odds. Although participants described involvement and commitment to quality palliative care, they also expressed a need for additional education and support about symptom control, language and access to specialist services and resources. CONCLUSION: The residential aged care sector is in need of support for providing palliative care, yet there are significant professional and system barriers to care delivery. The provision of enhanced palliative care educational and networking opportunities for nurses and care assistants in residential aged care, augmented by a supportive organizational culture, would assist in the adoption of a palliative approach to service delivery and requires systematic investigation.

Aged↗
PubMed2004

Culture-sensitive counselling, psychotherapy and support groups in the Orthodox-Jewish community: how they work and how they are experienced.

BACKGROUND: There is political and scientific goodwill towards the provision of culture-sensitive support, but as yet little knowledge about how such support works and what are its strengths and difficulties in practice. AIMS: To study groups offering culture-sensitive psychological and other support to the strictly orthodox Jewish community in London. METHODS: Semi-structured interviews with service providers, potential and actual users from the community, and professionals serving the community. Interviews asked about the aims, functioning and achievements of 10 support groups. RESULTS: Thematic analysis identified seven important themes: admiration for the work of the groups; appreciation of the benefits of culture-sensitive services; concerns over confidentiality and stigma; concerns over finance and fund-raising; concerns about professionalism; the importance of liaison with rabbinic authorities; need for better dissemination of information. CONCLUSIONS: The strengths and difficulties of providing culture-sensitive services in one community were identified. Areas for attention include vigilance regarding confidentiality, improvements in disseminating information, improvements in the reliability of funding and attention to systematic needs assessment, and to the examination of efficacy of these forms of service provision.

Attitude↗
PubMed2006

Political dynamics promoting the incremental regulation of secondhand smoke: a case study of New South Wales, Australia.

BACKGROUND: The history of governmental responses to the accumulation of scientific evidence about the harms of secondhand smoke (SHS) presents an intriguing case study of incremental public health policy development. Australia has long been considered a world-leader in progressive tobacco control policies, but in the last decade has fallen behind other jurisdictions in introducing SHS legislation that protects all workers. Bars, clubs and pubs remain the only public indoor spaces where smoking is legally permitted, despite SHS exposure in the hospitality industry being higher and affecting more people than in any other setting after domestic exposure. This paper examines the political dynamics that have shaped this incremental approach to SHS. METHODS: In-depth interviews with 21 key stakeholders in the state of New South Wales (NSW), including politicians, their advisors, health officials and tobacco control advocates, were conducted and subjected to thematic content analysis. Interviewees' comments provided insights into the dynamics surrounding the debates and outcomes of SHS legislative attempts and the current political environment, and about how to progress SHS legislation. RESULTS: SHS restrictions have been delayed by several broad factors: the influence of industry groups successfully opposing regulation; issue wear-out; and political perceptions that there is not a salient constituency demanding that smoking be banned in bars and clubs. Interviewees also provided suggestions of strategies that advocates might utilise to best overcome the current political inertia of incremental compromises and achieve timely comprehensive smoking bans. CONCLUSION: Advocates concerned to shorten the duration of incremental endgames must continue to insist that governments address SHS fundamentally as a health issue rather than making political concessions to industry groups, and should broaden and amplify community voices calling on governments to finish the job. Publicity to the growing number of state and national governments that have successfully implemented total bans over the past decade is likely to make incrementalism an increasingly unattractive political option.

Air Pollution, Indoor↗
PubMedDate not supplied

Medical management of intimate partner violence considering the stages of change: precontemplation and contemplation.

BACKGROUND: We undertook a study to understand how women who are victims of intimate partner violence (IPV) want physicians to manage these abusive relationships in the primary care office. METHODS: Thirty-two mothers in IPV shelters or support groups in southwestern Ohio were interviewed to explore their abuse experiences and health care encounters retrospectively. The interviews were taped and transcribed. Using thematic analysis techniques, transcripts were read for indications of the stages of change and for participants' desires concerning appropriate physician management. RESULTS: Participants believed that physicians should screen women for IPV both on a routine basis and when symptoms indicating possible abuse are present, even if the victim does not disclose the abuse. Screening is an important tool to capture those women early in the process of victimization. When a victim does not recognize her relationship as abusive, participants recommended that physicians raise the issue by asking, but they also warned that doing more may alienate the victim. Participants also encouraged physicians to explore clues that victims might give about the abuse. In later contemplation, victims are willing to disclose the abuse and are exploring options. Physicians were encouraged to affirm the abuse, know local resources for IPV victims, make appropriate referrals, educate victims about how the abuse affects their health, and document the abuse. Participants identified a variety of internal and external factors that had affected their processes. CONCLUSIONS: In hindsight, IPV victims recommended desired actions from physicians that could help them during early stages of coming to terms with their abusive relationships. Stage-matched interventions may help physicians manage IPV more effectively and avoid overloading the victim with information for which she is not ready.

Adolescent↗