RESUMEN
Despite improved patient and clinical outcomes, living donor kidney transplantation is underutilized in the United Kingdom, particularly among minority ethnic groups, compared to deceased donor kidney transplantation. This may in part be due to the way in which kidney services present information about treatment options. With a focus on ethnicity, semi structured interviews captured the views of 19 kidney healthcare professionals from two renal centres in West Yorkshire, about the decisional needs and context within which people with advanced kidney disease make transplant decisions. Data were analysed using thematic analysis. Themes were categorized into three groups: 1) Kidney healthcare professionals: language, cultural awareness, trusted personnel, and staff diversity, 2) Patient information resources: timing and setting of education and suitability of patient-facing information and, 3) People with advanced kidney disease: knowledge, risk perception, and cultural/religious beliefs. To our knowledge, this is the first study in the United Kingdom to investigate in depth, healthcare professionals' views on living donor kidney transplantation decision making. Six recommendations for service improvement/delivery to support decision making around living donor kidney transplantation among minority ethnic groups are described.
Asunto(s)
Etnicidad , Trasplante de Riñón , Humanos , Donadores Vivos , Reino Unido , Riñón , Atención a la Salud , Investigación CualitativaRESUMEN
BACKGROUND: Pain is a significant problem for many people with advanced disease or a serious illness. Culture and ethnicity can affect the experience and management of pain. However, there is limited research in South Asian communities in the UK on their experiences of pain. The aim of this study is to explore the experiences and attitudes of patients and family carers from South Asian communities about pain and its management within advanced disease or serious illness. METHODS: Qualitative thematic analysis based on descriptive phenomenology (Sundler et al. 2019). Qualitative semi-structured interviews with patients or family carers from South Asian communities (N = 15). Interviews were recorded, transcribed and analysed using an inductive approach. Public and Patient Involvement representatives from British South Asian communities were consulted for guidance. RESULTS: There were five key themes from the interviews: The importance of communication about pain with healthcare professionals; Concerns about taking pain medication; Personal resilience, privacy and self-management; Gender, culture and pain; Home pain management as struggle and frustration. CONCLUSION: To improve pain management for people from South Asian communities with advanced disease or a serious illness, there are a number of important issues for healthcare professionals from palliative and primary care services to address. These include: greater awareness around people's fears and concerns about pain medication; their potential use of alternative pain management strategies; and cultural issues such as resilience, privacy, dignity and gender roles. Effective communication between doctors, patients and family members could be improved by using a 'cultural humility' model; providing clear and accessible pain medication information; understanding and taking account of people with both low, and medium levels, of English language proficiency; and improving patient trust. Additionally, improvements to out of hours services could improve pain management for all patients managing their pain at home.
Asunto(s)
Pueblo Asiatico , Manejo del Dolor , Humanos , Familia , Dolor/tratamiento farmacológico , Investigación Cualitativa , Reino UnidoRESUMEN
Cancer pain presents in approximately 66% of patients in advanced stages. Although several guidelines and pharmacological options are available for cancer pain management (CPM), assessment and treatment of cancer pain remain inadequate globally, particularly in developing countries. Lack of knowledge and negative attitudes towards CPM among healthcare professionals (HCPs) are important barriers to CPM. This survey aimed to evaluate nurses' and physicians' knowledge, attitudes, and potential barriers regarding CPM in Libya. This cross-sectional survey involved a convenience sample of 152 oncology nurses and physicians working in six oncology settings in Libya. The response rate was 76%. The Barriers Questionnaire II (BQ-II) was used for data collection (higher scores signify greater attitudinal barriers and poorer knowledge). Data analysis was carried out using Statistical Package for Social Sciences (SPSS), version 26 software. An independent t-test (unadjusted estimate) indicated that Libyan nurses showed higher mean barrier scores (mean = 3.8, SD = 0.7) to CPM than physicians (mean = 2.9, SD = 0.8), p < 0.001. The six most common differences in attitudinal barriers between nurses and physicians were "opioid side effects," "poor tolerance," "strong patient endures pain," "distract the physician," "drug addiction," and "opioids impair immune function," p < 0.001. Multiple regression results (adjusted estimate) indicated that nurses had more barrier scores to CPM than physicians (B = - 0.530, p < 0.05), and participants with higher educational levels were associated with lower barrier scores to CPM (B = - 0.641, p < 0.05). Our results suggest that Libyan oncology HCPs hold perceived barriers, lack of knowledge, and negative attitudes towards CPM. Professional education and training in CPM, addressing phobia and myths on opioid usage, and the benefits and complications of using opioids are likely to result in reduced barriers to CPM in Libya.
Asunto(s)
Dolor en Cáncer , Neoplasias , Humanos , Manejo del Dolor/métodos , Dolor en Cáncer/etiología , Analgésicos Opioides/uso terapéutico , Estudios Transversales , Libia , Neoplasias/terapia , Conocimientos, Actitudes y Práctica en Salud , Encuestas y Cuestionarios , Actitud del Personal de SaludRESUMEN
Cancer pain remains a significant problem worldwide. It is often undertreated and presents in about half of cancer patients. Although several guidelines and pharmacological interventions for cancer pain management (CPM) exist, inadequate assessment and undertreatment of cancer pain are well-documented globally, especially in developing countries, including Libya. Perceptions, cultural and religious beliefs of healthcare professionals (HCP), patients, and caregivers about cancer pain and opioids are reported as barriers to CPM globally. This qualitative descriptive study aimed to explore Libyan HCPs', patients', and caregivers' views and religious beliefs about CPM and involved semi-structured interviews with 36 participants: 18 Libyan cancer patients, 6 caregivers, and 12 Libyan HCPs. Thematic analysis was used to analyse the data. Patients, caregivers, and newly qualified HCPs were concerned about poor tolerance and drug addiction. HCPs perceived a lack of policies and guidelines, pain rating scales, and professional education and training as CPM barriers. Some patients were unable to pay for medicines if they faced financial difficulties. Instead, patients and caregivers emphasised religious and cultural beliefs for managing cancer pain, including the use of the Qur'an and cautery. Our results suggest that religious and cultural beliefs, lack of knowledge and training in CPM among HCPs, and economic and Libyan healthcare system-related factors negatively affect CPM in Libya.
Asunto(s)
Dolor en Cáncer , Neoplasias , Humanos , Cuidadores , Personal de Salud , Investigación Cualitativa , Actitud del Personal de Salud , Religión , Neoplasias/complicacionesRESUMEN
BACKGROUND: Racial disparities in pain management have been observed in the USA since the 1990s in settings such as the emergency department and oncology. However, the palliative care context is not well described, and little research has focused outside of the USA or on advanced disease. This review takes a cross-national approach to exploring pain management in advanced disease for people of different racial and ethnic groups. METHODS: Mixed methods systematic review. The primary outcome measure was differences in receiving pain medication between people from different racial and ethnic groups. Five electronic databases were searched. Two researchers independently assessed quality using JBI checklists, weighted evidence, and extracted data. The quantitative findings on the primary outcome measure were cross-tabulated, and a thematic analysis was undertaken on the mixed methods studies. Themes were formulated into a conceptual/thematic matrix. Patient representatives from UK ethnically diverse groups were consulted. PRISMA 2020 guidelines were followed. RESULTS: Eighteen papers were included in the primary outcome analysis. Three papers were rated 'High' weight of evidence, and 17/18 (94%) were based in the USA. Ten of the eighteen (56%) found no significant difference in the pain medication received between people of different ethnic groups. Forty-six papers were included in the mixed methods synthesis; 41/46 (89%) were based in the USA. Key themes: Patients from different ethnically diverse groups had concerns about tolerance, addiction and side effects. The evidence also showed: cultural and social doctor-patient communication issues; many patients with unmet pain management needs; differences in pain assessment by racial group, and two studies found racial and ethnic stereotyping. CONCLUSIONS: There was not enough high quality evidence to draw a conclusion on differences in receiving pain medication for people with advanced disease from different racial and ethnic groups. The mixed methods findings showed commonalities in fears about pain medication side effects, tolerance and addiction across diverse ethnic groups. However, these fears may have different foundations and are differently prioritised according to culture, faith, educational and social factors. There is a need to develop culturally competent pain management to address doctor-patient communication issues and patients' pain management concerns. TRIAL REGISTRATION: PROSPERO- CRD42020167890 .
Asunto(s)
Etnicidad , Manejo del Dolor , Comunicación , Humanos , Dolor/tratamiento farmacológico , Cuidados PaliativosRESUMEN
OBJECTIVES: Health-related quality of life (HRQOL) is a complicated concept that can be measured using multiple health items. Although HRQOL is closely associated with people's subjective assessment of their own health, a limited number of studies have investigated which health items are considered most important and relevant by the general population. Even fewer empirical studies have investigated how HRQOL is understood in non-Western populations. This study used multidimensional unfolding analysis in a Chinese general population to explore the constructs of HRQOL. METHODS: A scoping review of Chinese generic HRQOL measures and a series of qualitative interviews produced a list of 42 potentially important health items in a Chinese cultural setting; 110 Chinese participants in face-to-face interviews ranked the health items from most important to least important. Responses were coded into a rectangular 110 × 42 matrix, and multidimensional unfolding was conducted to analyze participants' preferences for health items. RESULTS: It was found that demographic characteristics and one's health condition affected views of HRQOL. Meanwhile, 3 health items were considered to be most important across the whole sample: sleep quality, body constitution, and spiritual appearance. CONCLUSION: This study used a novel approach to explore how people coming from a Chinese cultural setting may perceive HRQOL and which aspects of HRQOL are most important to them. The study shows that multidimensional unfolding is a feasible approach to assess preferences in a general population. Future studies using this approach are recommended to further explore the constructs of HRQOL in other general populations.
Asunto(s)
Pueblo Asiatico , Indicadores de Salud , Estado de Salud , Calidad de Vida , Adulto , Constitución Corporal , China , Características Culturales , Autoevaluación Diagnóstica , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Calidad del Sueño , EspiritualidadRESUMEN
BACKGROUND: Advances in research suggest the possibility of improving routine clinical care for preeclampsia using screening (predictive) and diagnostic tests. The views of women should be incorporated into the way in which such tests are used. Therefore, we explored the views of women with experience of preeclampsia and other hypertensive disorders in pregnancy (HDPs) about predictive and diagnostic tests, treatment risks, and expectant management. METHOD: Eight hundred and seven women with experience of preeclampsia or other HDPs completed an online questionnaire. These women were participants in the Preeclampsia Registry (USA). The questionnaire contained 22 items to elicit women's views about predictive tests (n = 8); diagnostic tests (n = 5); treatment risks (n = 7), and expectant management (n = 2). An optional text box allowed participants to add qualitative open-ended comments. Levels of agreement with the statements were reported descriptively for the sample as a whole, and a preliminary investigation of the role of lived experience in shaping women's views was conducted by comparing subgroups within the sample based on time of HDP delivery (preterm/term). The qualitative data provided in the optional text box was analysed using inductive thematic analysis to examine participants' responses. RESULTS: Women generally favored predictive and diagnostic testing, although not because they would opt for termination of pregnancy. Participants generally disagreed that taking daily low-dose aspirin (LDA) would make them nervous, with disagreement significantly higher in the preterm delivery subgroup. A high proportion of participants, especially in the preterm delivery subgroup, would take LDA throughout pregnancy. The majority of participants would be more worried about the possibility of preeclampsia than about the risks of treatments to their health (60%), and that proportion was significantly higher in the preterm delivery subgroup. There were no differences between subgroups in the views expressed about expectant management, although opinion was divided in both groups. Overall, most participants opted to put the baby's interests first. CONCLUSION: Women with experience of hypertensive disorders were enthusiastic about improved predictive and diagnostic tests. However, varied views about treatment options and expectant management suggest the need for a shared decision-making tool to enable healthcare professionals to support pregnant women's decision-making to maximize the utility of these tests and interventions.
Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Hipertensión Inducida en el Embarazo/diagnóstico , Preeclampsia/diagnóstico , Mujeres Embarazadas/psicología , Toma de Decisiones , Programas de Detección Diagnóstica , Técnicas y Procedimientos Diagnósticos , Femenino , Humanos , Hipertensión Inducida en el Embarazo/terapia , Preeclampsia/terapia , Embarazo , Encuestas y CuestionariosRESUMEN
BACKGROUND: Although an integral part of ethical and quality health care, little is known about the informed decision making of Chinese women with different socioeconomic backgrounds within the context of antenatal testing. METHODS: To explore women's viewpoints on informed decision making regarding antenatal screening, a Q-methodology study that combines both quantitative factor analysis and interviews was conducted between June 2016 and February 2017 in Shanghai and Duyun. A total of 169 women (84 Shanghai and 85 Duyun) participated in the study of 41 ranked statements along a Q-sorting grid. RESULTS: Using by-person factor analysis, five distinct viewpoints are identified: (a) choice is shared with the partner/husband, but the mother has the right to make the final decision; (b) having antenatal tests is not about choice but about a mother's responsibility; (c) choice is a shared decision led primarily by the partner/husband and secondarily by the doctors; (d) choice should be made using the advice of doctors, but the decision should be made with the partner/husband; and (e) choice is a responsibility shared with the partner, family and doctors. CONCLUSIONS: The study reveals that women with better education and higher incomes demonstrate more autonomy than those with less education. The nuclear family clearly emerges as the main decision makers in health-care services in China. PATIENT AND PUBLIC CONTRIBUTION: The 169 participants shared their views and stories for at least an hour. They were debriefed after the interviews and contributed their thoughts on our study design and interpretation of the data.
Asunto(s)
Toma de Decisiones , Diagnóstico Prenatal , China , Ciudades , Femenino , Servicios de Salud , Humanos , EmbarazoRESUMEN
BACKGROUND: With an increasing awareness of people's satisfaction and feeling, health-related quality of life (HRQoL) has become an essential aspect of measuring health. HRQoL is fundamentally a foreign concept introduced to China from the West. While a growing number of studies applied western HRQoL measures, few content validity tests examined the legitimacy of applying Western developed HRQoL measures in a Chinese cultural setting. If there are distinct differences in health conceptualisation between China and the West, it can be argued that those western measures may fail to ask the most appropriate and important questions among a Chinese population in assessing health. As a limited number of studies have investigated Chinese people's understandings of health, this study aimed to explore how health is defined and described in China. METHODS: A Q-methodological study was conducted to explore subjective constructions of health among Chinese participants. A scoping review of Chinese generic HRQoL measures, supplemented by a series of qualitative interviews conducted in China, produced a list of 42 statements representing aspects of health considered as being important in a Chinese cultural setting. Chinese participants in face-to-face interviews ranked and sorted these statements. Data were analysed to identify clusters of participants who shared a similar perspective, using a by-person factor analysis procedure. RESULTS: 110 Chinese participants with various demographics characteristics completed sorting interviews. Five independent factors emerged: (I) "Physical independence and social interaction skills"; (II) "Physical health"; (III) "Sensations and feelings"; (IV) "Lifestyles"; (V) "Learning and working abilities". CONCLUSIONS: The Q-study showed that many health statements were rated highly as most important by a diverse range of Chinese participants but were not covered in the commonly used Western HRQoL measure EQ-5D. It then suggests that the EQ-5D descriptive system might need modification to improve its capacity to measure health status in China. The study thus raises a general question as to how appropriate the Western-developed HRQoL measures are when used to assess health in a significantly different cultural setting.
Asunto(s)
Actitud Frente a la Salud , Comparación Transcultural , Calidad de Vida/psicología , Adulto , China , Femenino , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Encuestas y CuestionariosRESUMEN
Cancer pain is a common symptom experienced by patients, caused either by the disease or its treatment. Morphine remains the most effective and recommended treatment for cancer pain. However, cancer patients still do not receive appropriate management for their pain, and under-treatment is common. Lack of knowledge and negative attitudes towards cancer pain and analgesia among professionals, patients and family caregivers are reported as one of the most common barriers to effective cancer pain management (CPM). To systematically review research on the nature and impact of attitudes and knowledge towards CPM, a systematic literature search of 6 databases (the Cochrane library, MEDLINE, PsycINFO, CINAHL, Web of Science and EMBASE) was undertaken in July 2018. Additionally, hand-searching of Google, Google Scholar and reference lists was conducted. The inclusion criteria were adult (18-65 years of age), studies which included attitudes and knowledge towards CPM, studies written in English, published literature only and cross-sectional design. Included studies were critically appraised by two researchers independently using the Joanna Briggs Institute Analytical Cross Sectional Studies Assessment (JBI-ACSSA). A total of 36 studies met the inclusion criteria. The main finding was that among professionals, patients, caregivers and the public there were similar attitudinal barriers to effective CPM. The most commonly cited barriers were fear of drug addiction, tolerance of medication and side effects of opioids. We also found differences between professional groups (physicians versus nurses) and between different countries based on their potential exposure to palliative care training and services. There are still barriers to effective CPM, which might result in unrelieved cancer pain. Therefore, more educational programmes and training for professionals on CPM are needed. Furthermore, patients, caregivers, and the public need more general awareness and adequate level of knowledge about CPM.
Asunto(s)
Dolor en Cáncer/terapia , Cuidadores/normas , Conocimientos, Actitudes y Práctica en Salud , Neoplasias/complicaciones , Manejo del Dolor/métodos , Cooperación del Paciente , Pautas de la Práctica en Medicina/normas , Dolor en Cáncer/etiología , Dolor en Cáncer/patología , Humanos , Cuidados PaliativosRESUMEN
BACKGROUND: Cell-free fetal DNA sequencing based non-invasive prenatal testing (NIPT) for Down syndrome (DS) has become widely available. In Hong Kong, obstetric providers in the public sector refer women identified at high risk of having a child with Down syndrome to obstetric providers in the private sector for NIPT. Little is known about how the NIPT has been adopted in the public sector where DS screening is provided for free of charge. The study aimed to identify the factors influencing providers' role enactment, such as consultation and referral, in the service provision of NIPT for DS in public and private healthcare sectors. METHODS: In-depth interviews were conducted with 20 obstetric providers offering NIPT in Hong Kong. Thematic narrative analysis was used to identify (i) the factors considered by participants when referring women for NIPT for Down syndrome in public and private healthcare sectors and (ii) their perceptions of the need to integrate NIPT into the current public antenatal service. RESULTS: Participants raised concerns about the lack of transparent referral guideline between public and private sectors for NIPT. Public obstetric providers reported little obligation to provide women with much information about risks and benefits of NIPT as it was not provided by public sectors. Some private providers assumed that women referred from the public sector had already received sufficient information about NIPT. The providers were also concerned about potential application of NIPT for further detection without regulation. CONCLUSIONS: Although the providers had good knowledge of clinical advantages of NIPT over conventional screening, they were uncertain about how to introduce NIPT to women. Guidelines are necessary to enable better coordination of public and private sectors services to enable women to make informed choices about the uptake of NIPT.
Asunto(s)
Síndrome de Down/diagnóstico , Sector de Atención de Salud , Obstetricia , Diagnóstico Prenatal/métodos , Sector Privado , Sector Público , Adulto , Conducta de Elección , Femenino , Hong Kong , Humanos , Masculino , Persona de Mediana Edad , Percepción , Embarazo , Investigación CualitativaRESUMEN
OBJECTIVES: Stakeholders' views are essential for informing implementation strategies for non-invasive prenatal testing (NIPT). Little is known about such views in developing countries. We explored attitudes towards NIPT among obstetricians in Pakistan, a developing, Islamic country. METHODS: A 35-item questionnaire was distributed and collected at eight events (a national conference and seven workshops in five cities) for obstetric professionals on advances in fetal medicine. RESULTS: Responses from 113 obstetrician show positive attitudes towards implementation of NIPT: 95% agreed prevention of genetic conditions was a necessity, and 97% agreed public hospitals should provide prenatal screening tests. However, participants also agreed the availability of NIPT would increase social pressure on women to have prenatal screening tests and to terminate an affected pregnancy (53% and 63%, respectively). Most participants would not offer NIPT for sex determination (55%), although 31% would. The most valued aspects of NIPT were its safety, followed by its utility and then accuracy. CONCLUSION: Participants generally supported the implementation of NIPT but raised concerns about social implications. Therefore, national policy is needed to regulate the implementation of NIPT, and pretest information and post-test genetic counselling are needed to mitigate social pressure and support parents to make informed decisions. © 2017 John Wiley & Sons, Ltd.
Asunto(s)
Actitud del Personal de Salud , Conocimientos, Actitudes y Práctica en Salud , Islamismo , Obstetricia , Diagnóstico Prenatal , Adulto , Anciano , Competencia Clínica , Femenino , Humanos , Islamismo/psicología , Masculino , Persona de Mediana Edad , Obstetricia/ética , Pakistán , Embarazo , Diagnóstico Prenatal/ética , Diagnóstico Prenatal/psicología , Diagnóstico Prenatal/estadística & datos numéricos , Religión y Medicina , Encuestas y Cuestionarios , Recursos HumanosRESUMEN
BACKGROUND: While non-invasive prenatal testing (NIPT) for fetal aneuploidy is commercially available in many countries, little is known about how obstetric professionals in non-Western populations perceive the clinical usefulness of NIPT in comparison with existing first-trimester combined screening (FTS) for Down syndrome (DS) or invasive prenatal diagnosis (IPD), or perceptions of their ethical concerns arising from the use of NIPT. METHODS: A cross-sectional survey among 327 obstetric professionals (237 midwives, 90 obstetricians) in Hong Kong. RESULTS: Compared to FTS, NIPT was believed to: provide more psychological benefits and enable earlier consideration of termination of pregnancy. Compared to IPD, NIPT was believed to: provide less psychological stress for high-risk women and more psychological assurance for low-risk women, and offer an advantage to detect chromosomal abnormalities earlier. Significant differences in perceived clinical usefulness were found by profession and healthcare sector: (1) obstetricians reported more certain views towards the usefulness of NIPT than midwives and (2) professionals in the public sector perceived less usefulness of NIPT than the private sector. Beliefs about earlier detection of DS using NIPT were associated with ethical concerns about increasing abortion. Participants believing that NIPT provided psychological assurance among low-risk women were less likely to be concerned about ethical issues relating to informed decision-making and pre-test consultation for NIPT. CONCLUSIONS: Our findings suggest the need for political debate initially on how to ensure pregnant women accessing public services are informed about commercially available more advanced technology, but also on the potential implementation of NIPT within public services to improve access and equity to DS screening services.
Asunto(s)
Actitud del Personal de Salud , Síndrome de Down/diagnóstico , Personal de Salud/psicología , Obstetricia/ética , Diagnóstico Prenatal/psicología , Aborto Inducido/ética , Aborto Inducido/psicología , Adulto , Anciano , Estudios Transversales , Toma de Decisiones , Femenino , Hong Kong , Humanos , Masculino , Persona de Mediana Edad , Partería , Percepción , Embarazo , Primer Trimestre del Embarazo/psicología , Diagnóstico Prenatal/ética , Diagnóstico Prenatal/métodos , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: Improving access for relatives at-risk of genetic conditions by building referral systems from primary care to genetic services is well recognised. OBJECTIVES: This study aimed to explore primary care professionals' (PCPs) views about using a short, seven-item family history questionnaire (S-FHQ) as an intervention for identifying at-risk relatives of patients with a genetic condition in routine primary care for referral to genetic services. METHOD: This qualitative study was conducted in the UK in 2013-14. Focus groups were held with 21 PCPs. The normalisation process theory (NPT) was used during analysis as the theoretical lens for exploring potential implementation and sustainability of the intervention. RESULTS: In principle, participants were supportive of the S-FHQ. They initially expressed enthusiasm for the S-FHQ and identified benefits of its use. However, in discussions about its use in practice, they raised concerns about their expertise to deliver the intervention, implications for their workload, potential duplication with existing roles and services in secondary care, the ethical implications of its use in routine care and its acceptability to patients. CONCLUSION: This study shows why even a short family history questionnaire, as an intervention for identifying at-risk relatives, is unlikely to be implemented by primary care professionals.
Asunto(s)
Actitud del Personal de Salud , Familia , Predisposición Genética a la Enfermedad , Anamnesis/métodos , Atención Primaria de Salud/métodos , Encuestas y Cuestionarios , Ética Médica , Grupos Focales , Pruebas Genéticas , Humanos , Percepción , Investigación Cualitativa , Derivación y Consulta , Carga de TrabajoRESUMEN
BACKGROUND: Patient autonomy in antenatal screening is a high priority for policy developers in many countries. OBJECTIVE: This paper presents women's understandings of how health professionals should facilitate informed screening choices with an emphasis on their understandings of autonomy and advice. DESIGN, SETTING AND PARTICIPANTS: The study was carried out in 2009 in the UK, using a qualitative approach. Ninety-eight participants of African, British White, Caribbean, Chinese and Pakistani origin had semi-structured interviews, which were analysed using framework analysis. RESULTS: Four themes were identified during the analysis: 'Meanings of advice in antenatal screening: the advice continuum', 'Recognition of the role of health professionals in decision making', 'Understandings of advice in the context of autonomous decision making' and 'Reasons given for wanting advice'. Women said they valued advice from health professionals to make decisions about antenatal screening, but their understandings of 'advice' ranged from information giving only to direction about screening choices. CONCLUSION: Many women wanted health professionals to support the process of making informed choices by engaging in discussion and did not see advice as incompatible with making autonomous choices. However, some women wanted direction about whether to have a screening test or not, something which policy and guidelines explicitly prohibit. This may cause an ethical dilemma for health professionals who are required to both support women's preference for care and adhere to a policy of non-directiveness. Further clarification is needed on how health professionals should support the process of making informed choices when women ask for clear direction on screening choices.
Asunto(s)
Conducta de Elección , Información de Salud al Consumidor/métodos , Autonomía Personal , Diagnóstico Prenatal/psicología , Rol Profesional , Adulto , Toma de Decisiones , Femenino , Humanos , Educación del Paciente como Asunto/métodos , Investigación Cualitativa , Factores SocioeconómicosRESUMEN
This study aimed to explore the hopes and fears of young adults with cystic fibrosis (CF). Fifteen young adults with CF, aged 18-29, were interviewed about their hopes and fears using a grounded theory approach. Five themes were identified during the analysis: perceptions of living with unpredictable health and fear of death and dying; hopes for normality; hopes for a normal relationship and/or marriage; hopes for having children; and hopes for a normal work life. Participants feared the unpredictable nature of CF and the suffering that they believed they would have to endure due to ill health before premature death. Despite their fears, participants hoped to live a "normal" life by achieving their hopes of having long-lasting relationships, having children and pursuing a career. The findings highlight the need to help alleviate the fears of young adults with CF and to enable them to plan to achieve their hopes, hence giving them a sense of control over their condition.
Asunto(s)
Actitud Frente a la Muerte , Fibrosis Quística/fisiopatología , Miedo , Adolescente , Adulto , Fibrosis Quística/psicología , Femenino , Humanos , Masculino , Adulto JovenRESUMEN
BACKGROUND: Patient information about living donor kidney transplantation is used to supplement conversations between health professionals, people with advanced kidney disease and potential kidney donors. It is not known if the information is designed to support decision-making about renal replacement options and if it helps people discuss living kidney donation with family and friends. OBJECTIVE: Critical review of resources used in outpatient kidney consultations to support patients' decision-making about living kidney donor transplantation. DESIGN: Mixed methods including an audit questionnaire and critical analysis of patient information leaflets. PARTICIPANTS AND MEASUREMENTS: All kidney transplant centres and renal units in United Kingdom received a questionnaire to elicit by whom, how, and when information about living kidney donation is delivered. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. RESULTS: Thirty-nine (54%) units participated. Patients discussed living donor kidney transplantation with nephrologists (100%), living donor nurse (94%), transplant co-ordinator (94%), and predialysis nurse (86%). Twenty-three leaflets were provided and reviewed, mean quality scores for inclusion of information known to support shared decision-making was m = 2.82 out of 10 (range = 0-6, SD = 1.53). Readability scores indicated they were 'fairly difficult to read' (M = 56.3, range = 0-100, SD = 9.4). Few included cultural and faith information. Two leaflets were designed to facilitate conversations with others about donation. CONCLUSIONS: Leaflets are unlikely to adequately support decision-making between options and discussions about donation. Services writing and updating patient leaflets may benefit from our six principles to guide their development.
Asunto(s)
Trasplante de Riñón , Humanos , Donadores Vivos , Encuestas y Cuestionarios , Recolección de Tejidos y Órganos , RiñónRESUMEN
Pakistan has the highest incidence and mortality rates of breast cancer in Asia, with high numbers of patients diagnosed at a young age suggesting the possibility of an inherited cancer syndrome. Communication of hereditary breast cancer (HBC) risk information with patients could enable earlier detection of the condition in relatives and reduce mortality rates. This study aimed to explore perceptions of healthcare professionals (HCPs) in Pakistan about communication with patients and their relatives about HBC. Semi-structured qualitative interviews were conducted with eighteen HCPs during March to May 2020 in Lahore. Thematic analysis shows the HCPs were generally supportive of informing patients themselves about HBC, but believed it was the patients' role to inform their relatives. HCPs also highlighted important barriers to communication with patients about HBC, including (i) patients' low socioeconomic status and educational attainment; (ii) high prevalence of the social stigma of breast cancer; and (iii) lack of health resources and facilities to provide genetic testing for HBC. In conclusion, HCPs would value the development of interventions to support communication between HCPs and patients. They also highlighted the need for interventions to support intrafamilial communication about HBC. Much research and political support are needed to address patient, social, and systemic-level barriers to facilitate communication about HBC.
RESUMEN
Oligonychus coffeae (Acari: Tetranychidae), popularly known as red spider mite (RSM) is one of the major pests of commercial tea (Camellia sinensis (L.) O. Kuntze) plantation world over. Many attempts have been made in the past to control this devastating pest using a variety of microbial bioagents, however, area-wise field success is very limited. We carried out an in vitro study to explore the potential of rhizospheric Bacillus spp. (B. amyloliquefaciens BAC1, B. subtilis LB22, and B. velezensis AB22) against O. coffeae through adulticidal and ovicidal activity. The 100% adult and egg mortality was observed with bacterial suspension (1 × 109 CFU/mL) by B. velezensis AB22, showing the lowest LC50 values for both adults and eggs of O. coffeae, i.e., 0.28 × 105 and 0.29 × 105, respectively. The study also throws some insights into the underlying mechanism through electron microscopy study and identification of some putative pesticidal metabolites from all the species. The three Bacillus species were observed to have four commonly secreted putative bioactive secondary metabolites, brevianamide A, heptadecanoic acid, thiolutin, and versimide responsible for their bio-efficacy against O. coffeae. The outcome of our study provides a strong possibility of introducing Bacillus spp. as a biological miticide and developing synthetic metabolites mimicking the mechanistic pathway involved in microbial bioefficacy.
RESUMEN
OBJECTIVE: The aim of this research was to compare attitudes between women from different cultural and/or religious backgrounds toward prenatal diagnosis (PND) and termination of pregnancy (TOP) for 30 different conditions. METHODS: A questionnaire examining parents' attitudes toward PND and TOP for 30 different conditions was completed by 100 Saudi, 222 UK-White, and 198 UK-Pakistani women. Comparison of overall attitudes with PND and TOP between groups was carried out, and a total score reflecting attitudes was obtained. RESULTS: In general, there were positive attitudes toward PND among the three groups surveyed. The attitudes of Saudi and UK-Pakistani women toward PND were more favorable than UK-White women. Overall, acceptance of TOP was lower than for PND. For the majority of conditions, acceptance of TOP was highest in Saudi women and lowest in UK-Pakistani women. CONCLUSION: Attitudes toward TOP were significantly different between the three groups and may be influenced by cultural and/or religious factors. Availability of social services, genetic counseling, and rehabilitation centers may also influence attitude toward PND and TOP.