223 research outputs found
Genetic knowledge and family relationships two case studies
No full textThere is an explosion of interest in the ‘new genetics’, and increasingly people are being referred to regional genetic clinics (RGC) for counselling and advice. This study of 30 families looked at the process of genetic counselling in one clinic in the North of England. Consultations were video recorded and the geneticist was interviewed after the clinic. Patients and their families were subsequently interviewed at home. Using some of the data from this qualitative study, and a case study approach, this paper looks at the way in which new genetic information may crucially affect social relationships within families. The geneticist at this clinic spent most of the consultation time looking for a diagnosis, explaining the details of genetic inheritance and considering the risks to future offspring. Psychosocial issues such as stigmatization, guilt or possible damage to social relationships were rarely discussed. Warnings are often given about the dangers of the ‘new genetics’, particularly in the areas of insurance or employment. However, unless we train sufficient genetic counsellors to deal with psychosocial issues as well as diagnosis and risk calculation, and unless the NHS provides sufficient money for the necessary clinics and support staff, the way ahead is indeed fraught with difficulty
Parental guilt: the part played by the clinical geneticist
No full textParents of children born with a disability often suffer feelings of inappropriate guilt and shame. Although some genetic counselors see their main task to be that of diagnosis and education, they also aim to relieve these feelings of guilt and shame. Little is known about the process of genetic counseling, and whether or not counselors achieve this aim. An exploratory study of one clinic, and one geneticist working with 30 families, using video recordings and taped interviews, indicated that this particular doctor sometimes succeeded in reducing guilt, either intentionally or unintentionally, but on one occasion guilt was iatrogenic, and increased rather than decreased. Further research is needed to examine other types and other styles of genetic counseling so that in future iatrogenic guilt can be avoided, and the distressing aspects of inappropriate guilt and shame reduced as much as possible
Clinical terminology: anxiety and confusion amongst families undergoing genetic counseling
No full textGenetic counseling is a rapidly expanding, but highly demanding, domain of doctor-patient communication. This paper reports results from an ethnographic study of families (n = 30) attending a genetic counseling clinic in Northern England. We suggest that the language used in this particular specialty is often confusing and misunderstood by the families involved. We found that unfamiliar terms may also conjure up alarming images. It is important therefore, that physicians, and in particular geneticists, try to use simple, understandable language, and give clear explanations for unfamiliar terms that cannot be avoided. The careful choice of words, and detailed explanation, not only reduces the risks of “labelling” and stigmatization, but may also prevent the unnecessary anxiety experienced by patients when they hear unfamiliar medical terms, such as the eponyms frequently employed by geneticists when giving a diagnosis.<br/
Menorrhagia: the need for equity in treatment in Britain
No full textEquity in health care is described as a key objective of the National Health Service (NHS) and the Department of Health in Britain. I There are various ways in which equity in health care may be defined, but for the purpose of this paper it is defined as 'equally informed access' to care. Using the example of treatment options for menorrhagia, this paper shows that gynaecological services available to women in two different geographical areas of northwest England vary considerably. As a result some women are not being informed about the full range of alternative treatments and are therefore being denied access to up-to-date surgical procedures which have been shown to be effective in the treatment of menorrhagia. The data is drawn principally from interviews with 49 general practitioners and also from hospital managers in these two areas
Lay understanding of genetic disease: a British study of families attending a genetic counseling service
No full textAlthough lay people know that various diseases can be inherited, the idea that unhealthy life styles are the crucial cause of ill health has been promoted by health education policy in the United Kingdom. However, a new paradigm seems to be developing. The medical profession is increasingly using genetics to explain ill health, and people are being referred to geneticists for information and counseling. Lay conceptions of genetic disease emerged during this qualitative study of the process of genetic counseling. The results reported in this paper suggest that many lay people lack knowledge of genetics and inheritance, and that there is considerable stigma attached to genetic disease. Misconceptions and fears may not always be recognized or resolved during the process of genetic counseling. The implications of such misunderstandings and beliefs are considered in this paper
General practitioners’ perceptions of the illness behaviour and health needs of South Asian women with Menorrhagia
No full textObjectives: A study of general practitioners' (GPs) perceptions of the health needs of women of South Asian descent who suffer from menorrhagia. Method: A qualitative study using semi-structured interviews with 50 GPs in two British towns. Findings: This study suggests that some women of South Asian descent may not consult their GPs even though suffering severe menorrhagia. Moreover, some GPs perceive that women may suffer from anaemia as the result of such illness behaviour. One reason for this reluctance to consult for menorrhagia may be the fact that some women of South Asian descent prefer to be examined by female doctors, yet may attend practices that lack a female partner. The study also shows that South Asian women, who consult male GPs for menorrhagia, are sometimes referred to hospital outpatients without internal examinations, and that women may be reluctant to keep their hospital appointments because of the lack of female gynaecologists. The study also indicates that a shortage of female interpreters may make communication difficult between some health care professionals and their patients, particularly when a complex and sensitive subject such as menorrhagia needs to be discussed. Conclusion: Women of South Asian descent may suffer serious problems such as iron deficiency anaemia, partly due to untreated menorrhagia. Since this was a study of GPs' perceptions of the health needs of South Asian women, it is now important to interview women themselves, to learn more about their perceptions of menorrhagia, and their perceptions of any subsequent contact with health care professionals
MITCHELL CHAPPLE, Joe
No full textPaper by Joel Mitchell Chapple about President Warren G. Harding’s life and time. This work was dedicated to Gen. Plutarco Elías Calles by its author (See library). / Obra de Joe Mitchell Chapple sobre el tiempo y vida del Presidente Warren G. Harding, dedicada por el autor al Gral. PEC (Ver Biblioteca)
Strong(er) Mayors in Ontario – What Difference Will They Make?
No full textThis paper is part of the IMFG Forum series. For a full list of papers, please visit bit.ly/42qpGdeOn October 19, 2022, IMFG convened a public panel discussion titled “Strong(er) Mayors – What Difference Will They Make?” The speakers were Karen Chapple, director of the School of Cities at the University of Toronto; City Hall journalist Matt Elliott; Alison Smith, assistant professor of political science at the University of Toronto; and Gabriel Eidelman, assistant professor, teaching stream, at the Munk School of Global Affairs and Public Policy at the University of Toronto. The panel was moderated by Zack Taylor, associate professor of political science at Western University.
The discussion and follow-up questions by the audience brought to the surface a variety of perspectives, both for and against the “strong mayor” provisions of the Strong Mayors, Building Homes Act passed by the Ontario legislature on September 8, 2022. This commentary contextualizes and summarizes the speakers’ remarks. It also takes account of the additional provisions in the Better Municipal Governance Act passed on December 8, 2022, and the February 17, 2023, resignation of Mayor John Tory.
The invited speakers provided insights on specific aspects of the law and their implications. Karen Chapple discussed the inspiration for the reform, American “strong mayor” cities. Matt Elliot probed how the relationship between the mayor and councillors might change. Alison Smith talked about the provincial-municipal intergovernmental relationship and the politics of housing policy. Finally, Gabriel Eidelman examines the implications of the change for the relationship between elected officials and professional administrative staff. Zack Taylor provides context for the discussion and, in his conclusion, addresses questions such as the risk of politicizing the public service, the implications for small and regional municipalities, and the role of the province.Institute on Municipal Finance and Governanc
What is burden of treatment and how is it experienced by patients living with lung cancer or chronic obstructive pulmonary disease?
No full textPeople living with illness experience a potentially modifiable treatment workload which can be exacerbated or ameliorated by the organisation and delivery of healthcare. Where treatment workload and the demands of daily life exceed capacity, treatment burden may occur. The ways that ‘workload’ and ‘capacity’ interact to create treatment burden have not yet been fully characterised and understood. This thesis consists of three published or publishable papers which aimed to identify, characterise and explain treatment burden in patients living with lung cancer or chronic obstructive pulmonary disease (COPD). The papers were underpinned by an abductive approach to study design, data collection and analysis which worked iteratively and recursively with empirical and theoretical materials to identify and characterise treatment burden. The first paper reported a systematic review and interpretative synthesis of literature concerning patients with COPD or lung cancer and their informal caregivers’ interactions with health/social care. The second paper set out a cross-sectional, qualitative, comparative analysis of patients’ lived experiences of treatment in lung cancer or COPD (semi-structured interviews with patients receiving specialist care n = 19; specialist clinicians n = 5; non participant observation of specialist outpatient clinics (11 hours, 52 minutes) n = 41). The third paper presented a conceptual model of potentially modifiable factors associated with ‘workload’ and ‘capacity’ in illness and delineated the hierarchical relationships between each. This resulted in the development of a taxonomy of treatment burden in COPD and lung cancer, characterising how, in lung cancer, the disease was seen to exert agency over patients, taking priority over daily life. Patients were not expected to direct their intensive, hospital-based, treatment workload. Capacity (from friends/family and the healthcare system) was made available. In COPD, patients were seen to be able to exert agency over their disease and were expected to direct their intensive, home-based, treatment workload. Capacity was less readily available, and patients had to work to mobilise it. Analysis enabled the interrogation and refinement of the taxonomy of treatment burden, contrasting the biographically disruptive diagnosis of lung cancer with the biographically erosive diagnosis of COPD and associating this with both ‘workload’ and ‘capacity’. First, the extent to which capacity was available to patients, and social skill was required to mobilise it. Second, the priority given to and the nature of the treatment workload. Conceptual modelling work identified potentially modifiable factors shaping ‘workload’ and ‘capacity’ in illness. Those shaping capacity were: 1) social skill 2) structural resilience 3) illness trajectory. Those shaping workload were: 1) structural (dis)advantage 2) how patients experience healthcare services 3) understanding of disease 4) normative expectations of motivation to participate in workload. These series of investigations have determined that treatment burden is more than simply the work that patients must do to meet the demands of treatment regimens. Instead, treatment burden is a complex, multidimensional and situational concept which occurs as a result of interactions between illness identity, workload and capacity and the potentially modifiable factors associated with each
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