Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups.

BACKGROUND: There is limited information regarding quality of life in patients with inherited ichthyosis. OBJECTIVES: To identify factors influencing quality of life in patients with inherited ichthyosis. METHODS: The study used focus groups and involved adult patients suffering from inherited ichthyosis from three French hospital centres. Group discussions were conducted by two facilitators and were continued until data saturation was reached. The verbatim transcripts were analysed independently by two investigators. Categories considered as key factors in the modulation of quality of life were negotiated until agreement was obtained. RESULTS: Data saturation was reached after the fifth group. A total of 25 patients affected by various forms of ichthyosis attended these focus groups. The identified factors influencing quality of life were related to physical health, daily life, relations with others or oneself. However, together with difficulties related to ichthyosis, patients also underlined some positive aspects of the disease and described specific measures used to improve their quality of life. CONCLUSIONS: This is the first study investigating the different factors that could impact quality of life in patients with ichthyosis. This provides an essential framework from which physicians can develop strategies to improve patient care and quality of life and to develop a specific quality of life questionnaire.

Should we retransplant a patient who is non-adherent? A literature review and critical reflection.

The majority of transplant centers around the world face an ethical debate whether to retransplant a young non-adherent patient. Non-adherence to lifelong immunosuppressants presents a significant risk for graft loss, yet rates remain consistently high. Despite a number of these patients presenting for retransplantation, there is little evidence to guide professionals in their decision-making. This paper aims to provide such guidance, by systematically reviewing the existing outcome data for retransplantation in patients who are known to be non-adherent to their immunosuppressants. This review searched for original papers that addressed retransplantation of a solid organ and included quantitative data on adherence or graft function. Only one original research paper was found to meet the inclusion criteria. This paper is reviewed, and details of the protocol to determine eligibility for retransplantation are summarized. The findings are discussed within the ethical context that transplant professionals work within, and the arguments for and against retransplantation are considered. The need for effective integration of adherence management into routine practice is highlighted, with an emphasis on reliable measurement of adherence throughout the patient's life. Examples of good practice are discussed, favoring prevention over cure.

[Study of names and folklore associated with Mycobacterium ulcerans infection in various endemic countries in Africa]. / Etude des appellations et des représentations attachées à l'infection à Mycobacterium ulcerans dans différents pays endémiques d'Afrique.

The purpose of this article is to present names used for Mycobacterium ulcerans infection (Buruli ulcer) and explain their meanings in various African languages. Representations associated with the disease were also studied. The study approach involved qualitative analysis of information from interviews and literature. Interviews were conducted with the directors of various programs and management centers. Findings from 9 African countries where Buruli ulcer is known to be endemic, i.e., Benin, Cameroon, Congo-Brazzaville, Côte d'Ivoire, Ghana, Uganda, Democratic Republic of Congo, Southern Sudan and Togo, showed that the names used for the disease could be classified into three categories based on the geographical origin of infection, the features of the observed lesions, and aspects of ost often associated with belief in witch-craft, i.e., bad luck, fetishes, and curses. Representation of the disease in different African languages were similar and appear to demonstrate a good understanding of the disease in the countries where Buruli ulcer is prevalent. The impact of the representations of the disease on therapeutic choices and itineraries is also discussed.

A European perspective: common developments, differences and challenges in patient education.

In May 1999, a European meeting was held in Paris on the evolution and developments of patient education. The situation in different European countries and the factors influencing the development and improvement of patient education were discussed. Five categories of factors were identified: research and evidence based standards, the organization of care, training and methodological support, professional value and acknowledgement, funding and place of patient education in health policy. Several common orientations and priorities for the development of patient education have been presented, and are highlighted in this paper.

Communication difficulties of healthcare professionals and family caregivers of HIV infected patients.

The family caregivers of HIV infected patients play a growing role in the support of the everyday life of their patient. Being more and more involved in different aspects of counselling and care-giving, they become the partner of the healthcare professionals who take care of the patient. It is nowadays well known that communication between healthcare professionals and patients is complex. So communication is between healthcare professionals and family caregivers, as our survey aims at demonstrating. Both the family caregivers and the healthcare professionals face difficulties and express needs and expectations that are important to meet in order to optimise the quality of care which is given to the patient.

Implementing health promotion in health care settings: conceptual coherence and policy support.

This article examines the level and conditions of development of the concept of "health promoting hospital (HPH)", in France and in Europe. Part of the literature on HPH was reviewed, looking at the kind of partnerships implemented within the HPH projects, and at the organisational strategies adopted by hospitals to be health promoting. The literature review is followed by an overview of the priorities defined by health policies in Europe. This research shows that there is still a lack of guidelines on how to put the health promotion concept into practice in health care settings. Moreover, it stresses that further research is needed in order to better define which personal skills ought to be developed through health education in health care settings, and how the development of such skills may be articulated to other priorities in health care settings.

[Attachment and child development in a residential institution in Kinshasa]. / Attachement et développement des enfants abandonnés vivant en institution résidentielle à Kinshasa.

UNLABELLED: Attachment proves the child's need for a presence as well as physical and psychological protection. It contributes to the development of social and emotional skills. However, the relation between attachment, cognitive development, and physical development remains to be established. OBJECTIVE: To evaluate the effect of the quality of attachment on the cognitive and physical development of children placed in institutions for abandoned children in Kinshasa through a first study of this kind in the Democratic Republic of Congo. MATERIALS AND METHODS: Eighty-four participants, aged 4-7 years, 42 abandoned children placed in residential institutions and 42 children living in families. The evaluation focused on the quality of attachment, cognitive performance, and physical development of these children. INSTRUMENTS: attachment story completion task (ASCT), Raven's colored progressive matrices (CPM) and growth vision. The Student t-test was used to compare the children's quality of attachment, cognitive performance, and physical development. RESULTS: For the ASCT, secure attachment was more frequently found among children living in families (66.7%) than in institutions (33.3%). The CPM showed obtained a higher mean value (19.3) for children living in a family than for children living in institutions (13.3). Moreover, for children with secure attachment, the mean CPM value and height-for-age ratio were, respectively, 83.7% in family situations and 73.1% in institutions. The mean values for children with insecure attachment were lower than for those with secure attachment in families (80.7%) and institutions (70.9%). However, despite the quality of attachment, the mean values obtained in families were higher than those obtained in institutions. CONCLUSION: These results suggest that the child's development, both cognitive and physical, depends on the quality of attachment. Life in the family gives better potentialities than life in an institution regardless of the quality of attachment.

[Adolescence and type 1 diabetes: self-care and glycemic control]. / Adolescence et diabète de type 1 : « prendre soin de soi ¼ et équilibre glycémique.

INTRODUCTION: Type 1 diabetes is one of the most frequent chronic diseases in children and adolescents. Self-care support is a crucial aspect of the medical care provided to adolescent patients with type 1 diabetes. In the perspective of health promotion, which seeks to empower people to become the actors of their own health, self-care may be operationalized in three dimensions: psychosocial life, general health, and disease. We looked at the process of autonomization in adolescents 13-15 years of age, and hypothesized that their level of glycemic control (HbA1c) would be related to their perceived level of self-care. PATIENTS AND METHODS: We conducted an exploratory study through 32 in-depth interviews with adolescents aged 13-15 years. The data collected was analyzed quantitatively and qualitatively, based on the annual mean HbA1c level. RESULTS: Significantly higher scores of perceived self-care were associated with levels of HbA1c ≤ 7.5% (P=0.038). Overall, adolescents with good glycemic control reported greater autonomy and complexity in self-care behaviors in all three dimensions of self-care. Moreover, our results show that adolescents with poor glycemic control tend to restrict the definition of self-care to its medical dimension and to exclude the psychosocial dimension. CONCLUSION: Our study confirms the hypothesis of a relation between HbA1c and the self-reported level of self-care in adolescents with type 1 diabetes. Moreover, it emphasizes the need to better respond to the young patients' psychosocial needs, in order to improve the long-term follow-up of adolescents with type 1 diabetes.