Support practices by an interdisciplinary team in a palliative-care unit for relatives of patients in agonal phase.

BACKGROUND: In the absence of extant recommendations, the aim of this study was to formalise support practices used by an interdisciplinary team in a palliative-care unit (PCU) for the relatives of patients in the agonal phase preceding death. The secondary objective was to understand the expectations of relatives during this phase in terms of the support provided by professionals and volunteers. METHODS: Thirty-two people took part in this study; all were interviewed through focus groups (FGs). Each FG comprised one category of individuals working in the PCU: nurses, care- assistants, doctors, psychologists, other professionals, palliative-care volunteers, and relatives. Groups were surveyed using an interview guide, and the interviews were recorded and transcribed to enable identification and characterization of all practices. Care practices were classified into four categories: current consensual practices (i.e. performed by all team members), occasional consensual practices, non-consensual practices (performed by one or a few participants), and practices to be developed. RESULTS: In total, 215 practices were mentioned by professionals and palliative-care volunteers: 150 current consensual practices, 48 occasional consensual practices, 1 non-consensual practice, 16 practices yet to be developed, and 29 practices for relatives. Many practices were mentioned by different categories of participants; thus, after cross-checking, the number of practices decreased from 215 to 52. A list of practices deemed desirable by all was drawn up and then validated by the entire interprofessional team. These practices were organised around four themes: providing care and ensuring comfort; communicating, informing, and explaining; interacting; and mobilising interdisciplinary skills. CONCLUSIONS: These results underline the importance of the quality of care provided to patients, the attention given to the relatives themselves, and they highlight the importance of the helping relationship. Following this study, which established a list of varied practices aimed at supporting the relatives of patients in agonal phase, it will be important to set up a broader study seeking to establish a consensus on these practices with an interprofessional group of experts from other PCUs using broad surveys and an adapted methodology. Such studies will make it possible to develop training modules for teams working with relatives.

How women with gynaecological cancer deal with treatment: issues of visibility and invisibility.

Through the psycho-anthropological approach study of the experiences of women affected by pelvic gynaecological cancer who undergo surgical treatment, this paper explores how these women perceive their bodily aesthetic and the impact this has on their sexuality and their relationship with their partner. Gynaecological cancers impact women in several ways, including having an effect on the way that they feel their femininity and appearance are perceived by others. Indeed, gynaecological cancer affects a part of the body intimately associated with representations of desirability that are linked to sexuality. Surgical procedures can cause scarring which can result in having a visible, physical impact on the patient, whilst also affecting their sense of body image and sexual identity. Healing treatments are too often associated with the visible, aesthetic appearance and the physicality of body, and neglect to treat questions of subjectivity. As such, women are compelled to feel like they have an integral body image, and that they are obliged to have a perfect body and need to be physically attractive to their partner.

["Standards, Options and Recommendations 2001" for radiotherapy in patients with non-metastatic infiltrating breast cancer. Update. National Federation of Cancer Campaign Centers (FNCLCC)]. / Standards, Options et Recommandations 2001 pour la radiothérapie des patientes atteintes d'un cancer du sein infiltrant non métastatique, mise à jour. Fédération nationale des centres de lutte contre le cancer (FNCLCC).

CONTEXT: The "Standards, Options and Recommendations" (SOR) project, started in 1993, is a collaboration between the Federation of french cancer centers (FNCLCC), the 20 french cancer centers, and specialists from french public universities, general hospitals and private clinics. The main objective is the development of clinical practice guidelines to improve the quality of health care and the outcome of cancer patients. The methodology is based on a literature review and critical appraisal by a multidisciplinary group of experts, with feedback from specialists in cancer care delivery. OBJECTIVES: To develop clinical practice guidelines for non metastatic breast cancer patients according to the definitions of the Standards, Options and Recommendations project. METHODS: Data were identified by searching Medline, web sites, and using the personal reference lists of members of the expert groups. Once the guidelines were defined, the document was submitted for review to 148 independent reviewers. RESULTS: This article presents the chapter radiotherapy resulting from the 2001 update of the version first published in 1996. The modified 2001 version of the standards, options and recommendations takes into account new information published. The main recommendations are: (1) Breast irradiation after conservative surgery significantly decrease the risk of local recurrence (level of evidence A) and the decrease in the risk of local recidive after chest wall irradiation is greater as the number of risk factors for local recurrence increases (level of evidence A). (2) After conservative surgery, a whole breast irradiation should be performed at a minimum dose of 50 Gy in 25 fractions (standard, level of evidence A). (3) A boost in the tumour bed should be performed in women under 50 years, even if the surgical margins are free (standard, level of evidence B). (4) Internal mammary chain irradiation is indicated for internal or central tumours in the absence of axillary lymph node involvement (expert agreement) and in the presence of lymph node involvement (standard, level of evidence B1). (5) Sub- and supra-claviculr lymph node irradiation is indicated in patients with axillary node involvement (standard, level of evidence B1).

[The patient care experience in radiotherapy: perspectives for better patient support]. / Les enjeux du vécu de la radiothérapie: perspectives pour un meilleur accompagnement des malades.

This paper reports the patient care experience during the course of the radiotherapy. Plights are multiple. Patients are confronted with a complex and unknown distressing space, an irrelavant information, a banalization of side effects, an isolation with a frequent inadequate support of their family or the caregivers team, with the fear of a definitive abandonment at the end of the treatment without comforting follow-up. It is imperative to state a real policy in order to improve the patient support. Sensibilization and training of the caregivers, in spite of a frequent overbooking technical work, is required in a pluridisciplinary approach to provide a relevant reception with the collaboration of psychologists, social workers and self care groups and associations. The personal implication of the physicians and technologists is also essential. The simple smile is the intangible proof of the reliable emotional support.

[Understanding the information booklet "For a better understanding of radiotherapy"]. / Compréhension de la brochure d'information "pour mieux comprendre la radiothérapie". Oncologues-radiothérapeutes de la région Aquitaine participants.

PURPOSE: To evaluate the level of understanding and the impact of the information booklet "For a better understanding of radiotherapy" for radiotherapy patients. PATIENTS AND METHODS: A survey by questionnaire was realized during the second semester 1999 with ten centers of radiotherapy in the Aquitaine area. One hundred booklets with a questionnaire and a postage-paid envelope were sent to the oncologists of these ten radiotherapy centers. A quantitative analysis of the questionnaires received and a qualitative analysis by anthropological methods (a prior reading of the document with 13 patients and a content analysis of the questionnaires, in particular of the free texts in it) were performed. RESULTS: The response rate was 10.8% for the quantitative analysis. The different actors in radiotherapy were partly identified: the oncologist and the technicians were clearly identified by 84.3% of the patients. However, their role seemed to be less discerned. The information given in the booklet was considered clear for 57.4% of the patients; 74.2% did not require explanations of the vocabulary, whereas 14.8% wanted explanations and 13.0% did not state an opinion. In the qualitative analysis, the booklet was found to be well received and understood even if technical explanations were sometimes needed. However, words in italics or small print and pictures without captions impeded the proper reading of the booklet. Finally, the personal real-life context of the patients was more present in comments during the reading with the anthropologist and in the free texts (which represented 26.9% of the received questionnaires). CONCLUSION: This booklet was judged to be useful by the patients and thought to "answer the questions which the patient may ask". It seems important to define the right moment for its distribution (the first visit, the first sequence of treatment, for example, would be more appropriate). Lastly, certain passages, especially in the introduction, could be modified so as to improve the legibility (in particular for the elderly). In addition, the informative content, largely well understood, could be extended with a glossary, using simple technical and always clear explanations.

[Anthropological studies of the representations of menopause in a population of women invited to a mass screening for breast cancer in Bouches-du-Rhône and Charente]. / Approche anthropologique des représentations de la ménopause dans une population de femmes invitées au dépistage de masse organisé des cancers du sein--Bouches-du-Rhône et Charente.

This is an anthropological study of a target population (breast screening women) in the Bouches-du-Rhône and Charente regions of France. The occurrence of menopause is comparable in these two departments and depends on providing medical care which leads to breast screening. Menopause is natural for these women and is considered as a sign of ageing. Psychosomatic symptoms vary with sociocultural groups. Hormonal replacement therapy furthers breast screening. In the popular imagination, there is a deficit between nature (non-HRT) and culture (HRT). They take estrogen in the form of soy to offset this inadequacy, which creates a new cultural syncretism.

[An anthropological study of radiotherapy care experience]. / Approche anthropologique du vécu de la radiothérapie.

An anthropological study has been carried out in order to evaluate the need expressed by patients undergoing radiotherapy treatment. The study was mostly qualitative and based on the radiotherapy experiences of 13 women with breast cancer and six men with head and neck cancer. A 24-year-old female anthropologist spent one year in the department of radiotherapy at the Bergonié Institute in Bordeaux. She collected data on patients' needs through the observation of their experience of treatment and personal interviews. These were put in context, analyzed both by qualitative and quantitative methods. The results point out the need for more information on the different steps of treatment and the patient's need 'for a smile' from the medical team; in other words, emphatic support.