Issues around food in mixed families of adolescent girls with bulimia nervosa: A qualitative study with photo-elicitation.

OBJECTIVES: Bulimia nervosa (BN) is a common psychiatric disorder among adolescent girls with potentially significant complications. Family relationships play a major role in the development and progression of this disorder. Studies in migrant populations suffering from eating disorders show contrasting results depending on the generation of migrants: first generation migrants have fewer eating disorders than the native population, while the prevalence of this disorder is more important than the latter among second and third generation migrants. In our clinical experience, we have frequently encountered so-called "mixed" families, which are families composed of one migrant parent and one non-migrant parent. Research focusing on this kind of family is scarce which is why we chose to explore their dynamic. METHODS: This study explored the issues around food and family relationships of adolescent girls suffering from BN, a topic that, to date, has not yet been studied. Ten interviews were conducted with five adolescent girls with BN between the ages of 16 and 20 and their parents, using photo-elicitation to enrich the collected data. RESULTS: The results were organized around two axes: (1) identity issues around food, that is the assimilation process described by both parents and adolescents concerning family meals and food habits, and how the adolescents struggle to manage this interbreeding; and (2) transmission issues with the consequences the migrant parent has to deal with to transmit his/her cultural identity with food while being far away from the homeland, and the difficulties between this parent and his/her child to share this heritage. Both issues, identity and transmission, appear to be central among these families. CONCLUSIONS: Our results suggest a difficulty in mentalizing identity issues in adolescent girls; the function of appeasement around non-mentalized tensions was highlighted. In our opinion, in this particular context, BN acts as a means of expressing the difficulty of their mixed culture. This enables it to draw some clinical implications, especially using mentalization-based therapy which has already shown efficacy in adolescents with borderline personality disorder and ED.

Development and validation of a patient-reported outcome in systemic sclerosis: the Hand scleroDerma lived Experience (HAnDE) scale.

BACKGROUND: Hand involvement in systemic sclerosis (SSc) is at the core of the disease, with a substantial impact on both functional aspects and quality of life. There is no patient-reported outcome (PRO) scale globally assessing hand involvement in SSc. OBJECTIVES: To develop and validate a PRO scale, the Hand scleroDerma lived Experience (HAnDE) scale, to assess the lived experience of hand involvement in patients with SSc. METHODS: This was an exploratory sequential mixed-methods study with two phases: (i) PRO development through an inductive process to analyse the structure of lived experience, involving 21 patients with SSc; and (ii) PRO validation by assessing the psychometric properties of the scale among 105 patients with SSc. RESULTS: Phase 1 enabled us to generate the 18-item provisional scale. From Phase 2, the mean (SD) total score of the scale was 29·16 (16·15). The item reduction process retained 16 items with five levels of answers (range 0-64). Internal consistency of the 16-item version was excellent (Cronbach's alpha = 0·946). Construct validity was very good, principal component analysis pointing towards a unidimensional instrument, with one factor explaining 56% of the variance, and concurrent validity being confirmed: Cochin Hand Function Scale r = 0·66; Health Assessment Questionnaire - Disability index r = 0·58; Hospital Anxiety and Depression Scale, anxiety r = 0·51, depression r = 0·4; Mouth Handicap in Systemic Sclerosis scale r = 0·61; 36-Item Short Form Health Survey, physical component r = -0·48, mental component r = -0·46; and Kapandji score r = -0·46. The correlations were statistically significant (P < 0·05). CONCLUSIONS: We propose, for future trials and clinical practice in SSc, a new PRO, the HAnDE scale, that assesses all the dimensions - functional, aesthetic, relational, existential and emotional - of the lived experience of hand involvement in SSc.

Photo-elicitation with adolescents in qualitative research: an example of its use in exploring family interactions in adolescent psychiatry.

BACKGROUND: Photo-elicitation is a method used increasingly often in qualitative health research, and its positive effect on the research process is well established today. Photo-elicitation appears to facilitate verbalization and insight and to improve relationships between the researcher and participants, thereby enriching the quality of the data collected. Nonetheless, it is barely used at all in the field of adolescent psychiatry. With the aim of exploring the potential of these methods for research with adolescents receiving psychiatric care, we conducted a qualitative photo-elicitation data collection study with this population, asking them about family interactions around food. METHODS: The data were collected from 15 adolescents and 17 parents during semi-structured interviews in which a photo taken by the adolescent served as the focus of discussion. Data were explored through inductive thematic analysis. RESULTS: Photo-elicitation played a threefold role in this study: (1) it induced the teens' interest, thought, and pleasure, (2) it played a mediating function during the interviews, and (3) it enabled family interactions to be viewed from the adolescent's perspective. Three themes concerning family interactions were found: (1) parent-child relationship patterns, (2) the functioning of the family group, and (3) the adolescent's individual relation with food, that is, the issue of the adolescent's autonomy. CONCLUSIONS: Photo-elicitation proved to be an innovative technique in qualitative research in the area of adolescent psychiatry, one that enriched the data and enabled the emergence of new themes in this field, related in particular to the process by which adolescents develop autonomy.

[National coordination of the ambulatory treatment centers (ATC) in Gabon: a new process to conduct the scaling up of care for people living with HIV-AIDS]. / La coordination nationale des centres de traitement ambulatoire au Gabon : une expérience novatrice de décentralisation opérationnelle de la prise en charge du VIH-sida.

Gabonese authorities are strongly mobilized in the fight against AIDS. With a national seroprevalence of 5.9%, 54,000 people are living with HIV-AIDS. Starting from the experience conducted on three ambulatory treatment centers (ATC) [Libreville, Franceville, Port-Gentil] in collaboration with the French Red Cross, Gabonese authorities decided the scaling up of HIV patients' care to seven new ATC at a national level. The increasing number of structures conducted to standardize treatment's guidelines, training of caregivers, quality of care, coordination, monitoring and evaluation. Technical and medical supervision of the ten ATC were attributed to the French Red Cross by Gabonese authorities with the financial support of the French Agency for Development. The ten ATC, founded by the ministry of public health, were then organized within a network under the responsibility of a national coordination. This structure created in September 2007 represents the main organism to conduct, evaluate and follow-up activities and functioning of the ten ATC. All these activities are conducted in agreement with the national program of fight against AIDS. Within one year this structure of coordination allowed to organize the training of 208 caregivers, to elaborate a team of national and international experts, to start a process of national guidelines, to elaborate technical procedures and indicators for monitoring, follow-up and evaluation. In June 2007, 5 ATC were in function taking care of 7,062 PLWA. In November 2008, 9 ATC were in function taking care of 8,174 PLWA. This project is planned for four years. It might allow to structure and organize a national network of care for PLWA according to the national strategy. This procedure of scaling up under the responsibility of a national team of technical and operational coordination is a new process. It completes and strengthens the national organization process.