Hematopoietic stem cell transplantation in children with sickle cell anemia: The parents' experience.

Genoidentical HSCT is currently the only curative treatment for SCA, preventing further vascular complications in high-risk children. Studies on the psychological implications of HSCT for recipient, sibling donor, and the rest of the family have been limited in SCA. This study enrolled ten families and used semi-structured interviews to explore the parents' experience at three time points: first before transplantation, then 3 months later, and 1 year later. Three themes emerged from the results: (a) the presence of anxiety, experienced throughout the process, and alleviated by coping strategies (positive thinking, family support, praying); (b) the ability to remain parents to recipient and other family members, despite apprehension and feelings of helplessness, reinforced by the mobilization of important resources at the individual/family levels; (c) the ability to acknowledge the opportunity for their child to be cured of the disease, despite feelings of guilt toward families without a donor, or their own families back home. Overall, the parental experience with HSCT is complex, involving intra-psychic, familial, cultural, religious, and existential factors. Thus, it is important for medical teams to be cognizant of these issues in order to provide the best support to families during the HSCT process.

Association of Matched Sibling Donor Hematopoietic Stem Cell Transplantation With Transcranial Doppler Velocities in Children With Sickle Cell Anemia.

Importance: In children with sickle cell anemia (SCA), high transcranial Doppler (TCD) velocities are associated with stroke risk, which is reduced by chronic transfusion. Whether matched sibling donor hematopoietic stem cell transplantation (MSD-HSCT) can reduce velocities in patients with SCA is unknown. Objective: To determine the association of MSD-HSCT with TCD velocities as a surrogate for the occurrence of ischemic stroke in children with SCA. Design, Setting, and Participants: Nonrandomized controlled intervention study conducted at 9 French centers. Patients with SCA were enrolled between December 2010 and June 2013, with 3-year follow-up ending in January 2017. Children with SCA were eligible if younger than 15 years, required chronic transfusions for persistently elevated TCD velocities, and had at least 1 sibling without SCA from the same 2 parents. Families agreed to HLA antigen typing and transplantation if a matched sibling donor was identified or to standard care in the absence of a matched sibling donor. Exposures: MSD-HSCT (n = 32), compared with standard care (n = 35) (transfusions for ≥1 year with potential switch to hydroxyurea thereafter), using propensity score matching. Main Outcomes and Measures: The primary outcome was the highest time-averaged mean of maximum velocities in 8 cerebral arteries, measured by TCD (TCD velocity) at 1 year. Twenty-five of 29 secondary outcomes were analyzed, including the highest TCD velocity at 3 years and normalization of velocities (<170 cm/s) and ferritin levels at 1 and 3 years. Results: Sixty-seven children with SCA (median age, 7.6 years; 35 girls [52%]) were enrolled (7 with stroke history). In the matched sample, highest TCD velocities at 1 year were significantly lower on average in the transplantation group (129.6 cm/s) vs the standard care group (170.4 cm/s; difference, -40.8 cm/s [95% CI, -62.9 to -18.6]; P < .001). Of the 25 analyzed secondary end points, 4 showed significant differences, including the highest TCD velocity at 3 years (112.4 cm/s in the transplantation group vs 156.7 cm/s in the standard care group; difference, -44.3 [95% CI, -71.9 to -21.1]; P = .001); normalization rate at 1 year (80.0% in the transplantation group vs 48.0% in the standard care group; difference, 32.0% [95% CI, 0.2% to 58.6%]; P = .045); and ferritin levels at 1 year (905 ng/mL in the transplantation group vs 2529 ng/mL in the standard care group; difference, -1624 [95% CI, -2370 to -879]; P < .001) and 3 years (382 ng/mL in the transplantation group vs 2170 ng/mL in the standard care group; difference, -1788 [95% CI, -2570 to -1006]; P < .001). Conclusions and Relevance: Among children with SCA requiring chronic transfusion because of persistently elevated TCD velocities, MSD-HSCT was significantly associated with lower TCD velocities at 1 year compared with standard care. Further research is warranted to assess the effects of MSD-HSCT on clinical outcomes and over longer follow-up. Trial Registration: ClinicalTrials.gov Identifier: NCT01340404.

Care and prejudice: moving beyond mistrust in the care relationship with addicted patients.

Social representations of addiction and the resulting stigmatization have been widely described and studied in the literature, but their effects are no less problematic. These representations, which also occur in care settings, generate a climate of distrust which damages the therapeutic relationship, and its ethical quality. This article, combining clinical experience and an ethical stance, offers an original, innovating approach to the existence of distrust in care relationships in the area of addiction. Pragmatic approaches deriving from the human sciences and analytical philosophy provide an invitation to escape from the demanding climate of mistrust, and to take the gamble on trust so as to improve the quality of interactions between protagonists in care. In complementary fashion, a sociology of action can combat the disquiet generated by distrust through a new commitment to innovating forms of action. This "poetic" mode of action is legitimized by the reflection that backs it up, and by its presentation to peers qualified to approve it. Finally, continental moral philosophy underlines the importance of a carefully weighed commitment on the part of caregivers and addicted patients towards promises aiming to support a sincere care relationship, without damaging the therapeutic dynamic or the ethical quality by providing too many safety nets. This reflection is intended to achieve better identification of the clinical and ethical issues raised by mistrust, and inclusion of these aspects in the training of personnel and in care provision planning.

[Choosing the name in international adoption]. / Le choix du prénom dans les situations d'adoption internationale.

In the context of international adoption, the question is raised of the links which the adoptive parents may or may not maintain with the culture of the child's birth country. The name which the adoptive parents choose reflects this questioning. A study was carried out into this subject with parents and children in order to gain a better understanding of the feelings of belonging, filiation and affiliation in these situations.

Qualitative research using photo-elicitation to explore the role of food in family relationships among obese adolescents.

Obesity in adolescence is a major public health issue. Family relationships have an important role, whether in the onset of the condition, its maintenance, or the way in which the problem is approached. Food and family relationships are two major elements in therapeutic care. The subject of the present study is the investigation of the place of food within family relationships among obese adolescents, so as to tailor care strategies. Twelve semi-structured interviews were conducted among adolescents presenting obesity and their parents. The investigation was qualitative, and used photo-elicitation. A photograph produced by the subject is used as the basis for narrative, and the verbal material obtained is analysed using Interpretative Phenomenological Analysis. The results can be categorised along two axes. The first describes the place of food in the one-to-one parent-child relationship; the second describes the organisation of the family group. This study evidenced two possible lines of approach in understanding the place of food in these families. There are major interrelations between food and relationships within the family, so that implications for therapy can be drawn: taking account of bonding between parent and child, and therapeutic orientation towards family functioning rather than towards individual eating patterns.

Impact of migration on explanatory models of illness and addiction severity in patients with drug dependence in a Paris suburb.

Objectives of this study were to assess explanatory models (considering illness experience and meaning), addiction severity among patients with drug dependence, and the role of migration. Adapted Explanatory Model Interview Catalogue interviews were conducted with 70 outpatients in a Paris suburb. Among them, 42 were either first- or second-generation immigrants, most from North Africa. Explanatory models were analyzed qualitatively and quantitatively according to migration status, assessing potential confounders with multivariate linear models. Explanatory models were heterogeneous. Compared with nonmigrants, migrants reported fewer somatic and violence-related symptoms. They attributed the causes of their addiction more frequently to social and magico-religious factors and less to psychological factors. Conversely, no difference in addiction severity was found between migrants and nonmigrants. Considering local patterns of illness experience and meaning of drug dependence is a critical component of culturally sensitive clinical care.

A critical review of dissociative trance and possession disorders: etiological, diagnostic, therapeutic, and nosological issues.

OBJECTIVE: Although the Diagnostic and Statistical Manual of Mental Disorders (DSM), Fourth Edition, acknowledges the existence of dissociative trance and possession disorders, simply named dissociative trance disorder (DTD), it asks for further studies to assess its clinical utility in the DSM-5. To answer this question, we conducted the first review of the medical literature. METHOD: The MEDLINE, CINAHL, and PsycINFO databases were searched from 1988 to 2010, seeking case reports of DTD according to the DSM or the International Classification of Diseases definitions. For each article, we collected epidemiologic and clinical data, explanatory models used by authors, treatments, and information on the outcome. RESULTS: We found 28 articles reporting 402 cases of patients with DTD worldwide. The data show an equal proportion of female and male patients, and a predominance of possession (69%), compared with trance (31%). Amnesia is reported by 20% of patients. Conversely, hallucinatory symptoms during possession episodes were found in 56% of patients and thus should feature as an important criterion. Somatic complaints are found in 34% of patients. Multiple explanatory models are simultaneously held and appear to be complementary. CONCLUSION: Data strongly suggest the inclusion of DTD in the DSM-5, provided certain adjustments are implemented. DTD is a widespread disorder that can be understood as a global idiom of distress, probably underdiagnosed in Western countries owing to cultural biases, whose incidence could increase given the rising flow of migration. Accurate diagnosis and appropriate management should result from a comprehensive evaluation both of sociocultural and of idiosyncratic issues, among which acculturation difficulties should systematically be considered, especially in cross-cultural settings.

Transcultural and familial factors in bilingualism and language transmission: A qualitative study of maternal representations of French-Maghrebi Arabic bilingual children.

This qualitative exploratory study examined transcultural and familial factors involved in bilingualism and minority language transmission among French and Arabic-speaking children. Participants included 30 children aged 4 to 6 years, born in France, and their bilingual French-Maghrebi Arabic-speaking parents. Children's bilingual language profiles were assessed with the ELAL Scale for Maghrebi Arabic (minority language) and the Neel Scale for French (majority language). Mothers participated in qualitative interviews about cultural and language practices and representations. Interview contents were compared with the children's language profiles. Results indicated that parents closely associated the transmission of the Arabic language with their cultural heritage transmission. The parents of fluent bilinguals had a strong desire to transmit the minority language. Mothers of minority language dominant bilingual children reported little perception of change in their lives since migration. Half of the mothers of majority language dominant bilingual children reported relationship or emotional difficulties with their children. Four minority language transmission types were identified: direct parent-child transmission; indirect transmission through private classes; indirect transmission through visits to family in the parents' native countries; and alternative transmission by another family member. Direct parent-child transmission was most frequent among the fluent bilinguals. Families' processes of hybridity were related to language transmission and bilingual development of children. Parental cultural affiliations to native country were related to minority language transmission. Perception of change since migration and affiliation to host country may also play a role in harmonious bilingual development. Moreover, the quality of family relationships can affect minority language transmission.

Patients' beliefs about the causes of systemic lupus erythematosus.

OBJECTIVE: Beliefs about the causes of SLE have rarely been investigated. The purpose of this study was to explore these beliefs. METHODS: Face-to-face interviews were carried out with a total of 33 women with SLE, fulfilling the ACR criteria, with a median age of 40 (range 15-65) years. Data were analysed using interpretative phenomenological analysis. RESULTS: Women attributed SLE to many causes, some of them being not congruent with biomedical models. The most frequent beliefs about the causes of SLE related to autoimmunity, psychological and familial causes, heredity, magico-religious causes (especially in first- and second-generation migrants) and infectious causes. Autoimmunity was often seen as a self-destructive process. CONCLUSIONS: Being diagnosed with SLE prompted 'Why me?' and 'Why now?' questioning among these women, who attempted to reconstruct coherence in their life histories. For clinicians, analysis of the beliefs about the causes clarifies what is at stake for the patient. The objective is to allow patients to produce narrative to describe their chronic illness experience in order to facilitate a long-term treatment alliance. Further studies are required to understand relationships between beliefs about causes, psychological distress and SLE morbidity.

[Taking care of the families of air disaster victims]. / La prise en charge des families de victimes d'une catastrophe aérienne.

The medico-psychological emergency unit in Seine-Saint-Denis (93) was involved in managing the families of the victims of the AF447 flight crash which took place on the night of 31 May and 1 June 2009 between Rio de Janeiro (Brazil) and Paris. It is interesting to study the system set up at the airport, the symptomatology observed, and the parameters of the efficiency of the care provided.

The benefits of mindfulness-based interventions on burnout among health professionals: A systematic review.

OBJECTIVE: Healthcare professional burnout affects performance and has a negative impact on healthcare as a whole. Mindfulness-based Interventions (MIs), developed over the last 30 years, are increasingly used by healthcare professionals to reduce the risk of burnout. Yet the impact of MIs on burnout remains to be clarified. This review aimed to summarize and evaluate the existing literature on the potential benefits of MIs to minimize burnout risk. METHODS: We conducted a systematic review of the literature, reporting according to the PRISMA standards. PubMed, Psychinfo, Web of Science and Science Direct databases were screened for original articles. Articles in English assessing an MI in combination with burnout measures were included up to September 2018. RESULTS: Thirty-four articles were included. Only four randomised controlled trials concluded to burnout improvement after several weeks of MIs (11,8%). In the remaining five randomised controlled trials, results did not reach statistical significance. Of the four controlled, non-randomised studies, three showed significant improvements on burnout. Twenty-one studies did not report a controlled trial design. Overall the results appeared to be widely heterogeneous and several methodological concerns arose from the review. CONCLUSION: This review shows the overall insufficient level of evidence offered by the literature assessing the effects of MIs on burnout in health professional populations. However, some studies have reported promising results and future research should address methodological issues and define more precise contexts of interventions and target populations that could benefit from MIs.

Is Ricoeur's Notion of Narrative Identity Useful in Understanding Recovery in Drug Addicts?

From Ricoeur's narrative theory, we argue that drug addicts may particularly need the help of literature, in a broad sense- fiction, history, and also specialized literature on addiction-to make their lives intelligible, to construct their identities, and to be able to change. Their need for this popular and professional literature concerns the numerous theories in the field of addiction. This literature is encountered indirectly by patients via interaction with professionals. It reflects attempts on the part of practitioners to find turning points in their patients' life stories, as in the mimesis circle described by Ricoeur. Our hypothesis is therefore explored in the light of certain sociological and psychiatric models that plot patients' lives, especially in the recovery period. The risks of a noncritical appropriation of this literature are discussed. Indeed, patients may hesitate between several identification models, loss of identity, and identity withdrawal.

"If walls could talk": A photo-elicitation-based observation of service users' perceptions of the care setting and of its influence on the therapeutic alliance in addiction treatment.

A good quality therapeutic alliance is central to the support and treatment of people who use psychoactive substances. Although previous research has suggested that place has an important role in sustaining the therapeutic alliance, this issue has been insufficiently explored in the field of addiction treatment. We conducted a qualitative study using photo-elicitation and interviewing service users in an outpatient addiction treatment centre. They reported both strongly positive and negative perceptions of the place, alongside an unstable therapeutic alliance. Apprehending the place in which care is delivered as a dynamic relational network helps to understand the role of place in shaping the therapeutic alliance in addiction treatment. There is a need for careful design and layout, and thoughtful organisation of these places.

Overcoming professionals' challenging experiences to promote a trustful therapeutic alliance in addiction treatment: A qualitative study.

BACKGROUND AND AIMS: A good therapeutic alliance plays a major role in the healing process. Professionals working in addiction treatment report high levels of psychological distress related to work and this may challenge the establishment of a trustful therapeutic alliance, and lead to a loss of care quality provided to service users. The purpose of this study was to investigate the experience of specialized professionals, its effects on trust and the therapeutic alliance, and the means to restore them. DESIGN: We conducted a qualitative study using a semi-structured questionnaire and a narrative tool. Discourse was extracted from focus groups and individual interviews and analyzed following the Interpretative Phenomenological Analysis method. PARTICIPANTS: Twenty-six professionals from three addiction treatment centers in the Paris area were interviewed. FINDINGS: The difficulties weighing on the care alliance were described by the participants in terms of their nature, their effects and means to overcome them. Emotional drain leads to a climate of relational distrust and the temptation to desert or over-control patients. Teambuilding, specific training and self-care are viewed as means to restore a therapeutic alliance based on an appropriate type of trust. CONCLUSIONS: Distrust deriving from professionals' challenging experiences may lead to worrying consequences. Promoting democratic organization of care structures, specific training, and also responsible self-care on the part of professionals could help to restore a type of trust that helps to establish a therapeutic alliance suited to service user individualities. This could ultimately be beneficial for user care, professional wellbeing and team functioning.

Design of the DREPAGREFFE trial: A prospective controlled multicenter study evaluating the benefit of genoidentical hematopoietic stem cell transplantation over chronic transfusion in sickle cell anemia children detected to be at risk of stroke by transcranial Doppler (NCT 01340404).

BACKGROUND: Children with sickle cell anemia (SCA) have an 11% risk of stroke by the age of 18. Chronic transfusion applied in patients detected to be at risk by transcranial Doppler allows a significant reduction of stroke risk. However, chronic transfusion exposes to several adverse events, including alloimmunization and iron overload, and is not curative. Hematopoietic stem cell transplantation allows termination of the transfusion program, but its benefit has not been demonstrated. DESIGN: DREPAGREFFE (NCT01340404) is a multicenter, prospective trial enrolling SCA children younger than 15years receiving chronic transfusion due to a history of abnormal transcranial Doppler (velocities ≥200cm/s). Only those with at least one non-SCA sibling and parents accepting HLA-typing and transplantation with a genoidentical donor were eligible. Chronic transfusion was pursued in patients with no available donor, whereas others were transplanted. Comparison between the 2 arms (transfusion vs transplantation) was analyzed using both genetic randomization and propensity-score matching as a sensitivity analysis. The primary end-point was the velocity measure at 1year. Secondary endpoints were the incidence of stroke, silent cerebral infarcts and stenoses, cognitive performance in comparison with siblings, allo-immunization, iron-overload, phosphatidyl-serine, angiogenesis/hypoxia, brain injury-related factor expression, quality of life and cost. OBJECTIVES: To show that genoidentical transplantation decreases velocities significantly more than chronic transfusion in SCA children at risk of stroke. DISCUSSION: DREPAGREFFE is the first prospective study to evaluate transplantation in SCA children. It compares the outcome of cerebral vasculopathy following genoidentical transplantation versus chronic transfusion using genetic randomization and causal inference methods.

[Stress and coping strategies in systemic lupus erythematosus]. / Stress et stratégies d'ajustement dans le lupus erythémateux systémique.

UNDENIABLE PSYCHOLOGICAL IMPACT: Systemic lupus erythematosus (SLE), a chronic and unpredictable disease with functional disability and with a possible involvement of the central nervous system, leads to severe psychological distress. THE ROLE OF STRESS AND COPING: Many studies have investigated the place of major and minor stress and coping strategies in SLE morbidity (activity, organ damage, and physical and mental component of quality of life). Stress as a provoking factor is not proved, but stress seems to act as an exacerbating factor in the activity and to have an impact on quality of life. Coping strategies are more consistently associated with quality of life than activity. Organ damage appears to be less associated with psychosocial factors than activity or quality of life. THE NEED FOR ACTION: Despite the limitations of these studies, therapeutic interventions have to be proposed to reduce psychological distress, to improve quality of life, and maybe to moderate the progression of the disease.

Living from day to day - qualitative study on borderline personality disorder in adolescence.

OBJECTIVE: The purpose of this study was to assess how far identity and self-image disturbances are features of borderline personality disorder (BPD) in adolescence. METHOD: Face-to-face interviews were carried out with a total of 50 adolescents with BPD and 50 controls, with a median age of 16 (SD 1.1; range 13 to 18) years. Data was analysed using a qualitative methodology, interpretative phenomenological analysis (IPA). Thematic statements representative of adolescents' lived experience were extracted from the interviews. RESULTS: Four main themes representing the day-to-day experiences of adolescents with BPD were identified: emotional experiences characterised by the feelings of fear, sadness and pessimism; interpersonal relationships characterised by the feelings of solitude and hostility from others; a conformist self-image characterised by a feeling of normality and difficulty in projecting into time; and, a structuring of discourse characterised by discontinuity in the perception of experiences. CONCLUSION: This qualitative study suggests that the day-to-day experiences of adolescents with borderline personality disorder is centred on the experience of the present. Discontinuity in self-image, alongside marked dysphoric manifestations, leads to distress and hinders compliance with care. These issues are highly relevant in psychotherapy and could lead to more effective treatment of the disorder in adolescents.

OBJECTIF: Le but de cette recherche était d'étudier l'identité ainsi que l'image de soi dans le trouble de la personnalité borderline (TPB) à l'adolescence. MÉTHODE: Des entretiens en face à face ont été menés avec 50 adolescents souffrants de TPB et 50 contrôles, avec une moyenne d'aige de 16 ans d'âg (ET 1.1; distribution de 13 à 18). Les données ont été analysées avec une méthode qualitative, l'analyse phénoménologique interprétative (API). Les axes thématiques, représentatifs du vécu des adolescents, ont été extraits à partir des entretiens. RÉSULTATS: Quatre axes thématiques d'expériences ont été retrouvés chez les adolescents avec un trouble de la personnalité borderline: les expériences émotionnelles caracrérisées par les sentiments de peur, tristesse et pessimisme; les relations interpersonnelles caractérisées par les sentiments de solitude et d'hostilité des autres; une image de soi conformiste caractérisée par un désir de normalité et difficulté à se projeter dans le temps; une structuration narrative marquée par une discontinuité dans la percéption d'expériences. CONCLUSION: Cette étude qualitative suggère que le vécu d'adolescents avec un trouble de la personnalité borderline est centré sur l'expérience du présent. La discontinuité dans l'image de soi ainsi que les manifestations dysphoriques induisent une souffrance et perturbent l'alliance dans les soins. Ces résultats ont des implications importantes pour les prises en charge psychothérapeutiques et pourraient conduire à des soins plus efficaces d'adolescents avec ce trouble.