[Consequences and experiences of the transition to adult medicine for young people living with human immunodeficiency virus (HIV)]. / Conséquences et vécu de la transition en médecine d'adultes des jeunes vivant avec le virus de l'immunodéficience humaine (VIH).

OBJECTIVES: Continuity of care is a major challenge for young people living with HIV, especially when transitioning from pediatric to adult care. A qualitative study was conducted in an attempt to explore and describe the transitions resulting from this change of care and to identify factors influencing this process. PATIENTS AND METHODS: Seven young adults, HIV-infected since childhood, with a median age of 25 years, with more than 2 years of experience since transitioning to adult care, participated in this qualitative research. Data were collected through semi-structured interviews. RESULTS: Becoming an adult has depended upon a double change in perception: leaving the cocoon of the pediatric ward made them feel more adult, but entering the adult universe where the disease is more visible and the environment more "cold" and "unfamiliar" made them feel more vulnerable. This "clash of worlds" creates a transformation leading to adulthood, where a relation based on mutual trust remains fundamental for the continuity of care and for pursuing the youth's personal development in the social and affective spheres. CONCLUSION: Self-construction on various levels (identity, social, affective) while maintaining regular medical care is the challenge of youth transitioning to adult care. A specific nurse-based consultation could be a useful tool for helping young people through this difficult process.

[Psychosocial issues in HIV positive women during the perinatal period]. / Vécu des mères séropositives pour le VIH dans la période périnatale.

OBJECTIVE: To study the feelings of HIV infected mothers during the perinatal period regarding circumstances of HIV diagnosis, disclosure to partner and fear of contamination. POPULATION AND METHODS: A study based upon personal interviews was carried out from November 2003 to January 2004 upon routine pediatric outpatient visits for infants born to HIV positive mothers. RESULTS: This study included 54 women of which 70% were from Sub-Saharan Africa. Fifty-nine per cent discovered their HIV status during a pregnancy. Seventy-seven per cent of partners were informed of maternal status. Among the women reluctant to inform their partner, the main reasons given were fear of violence and separation. Seventy-two per cent of interviewed women refused their spouses to be informed by the medical staff. Medical care during pregnancy (moral support, delivery) was judged as good by a majority of women (90%) who found the behavior of the staff mostly satisfactory. Final child serology remains the most definitive test for mothers, 47% of whom fear the risk of a potential postnatal contamination of their children. CONCLUSION: In these isolated women, many of whom have recently discovered their HIV status, a multidisciplinary approach including psychosocial support is essential.

[How to discuss death with a dying child: a story can help?]. / Comment parler de la mort à un enfant en fin de vie: un conte peut-il être une aide?

Is it necessary - and possible - to discuss death with a child in palliative phase? How should one approach the subject? A recent Swedish study demonstrated the benefits for parents who discussed with their child his or her imminent death, and raised the question of the role nursing can play to help parents. The mother of one child treated in our unit recently wrote a story 48 hours before the child's death. The story served to broach a number of recurrent questions often raised by dying children and their families: fear of the unknown, of being replaced, the inevitability of death, grief, and fear of being forgotten... The story was given to 13 families with dying children. In order to evaluate the story's impact on families and to determine whether a document which stimulates dialogue should continue to be given to parents, we asked that they fill out a questionnaire. Fifty-five percent of parents answered, and confirmed that the story was experienced as a positive thing and helped parents to talk with their children. This study raises many questions and should be part of a global accompaniment strategy. A review of medical, general and children's literature, as well the results of our study, lead us to conclude that the medical body should lend its full support to families who wish to engage in this dialogue with their children.

[Quality of life of adolescents surviving childhood acute lymphoblastic leukemia]. / Vécu des adolescents guéris d'une leucémie aiguë lymphoblastique.

PURPOSE: To evaluate how adolescents and young adults cured of acute lymphoblastic leukemia (ALL) treated during childhood have integrated the disease, and possible death related to cancer. Particularly, we have focused on experiences related to diagnosis announcement, hospitalisation and treatments and consequences on their social, psychological and somatic behaviour. PATIENTS: Forty-one patients cured of ALL have been enrolled in the study and answered one interview with clinical psychologist or research nurse. RESULTS: Although 60% of the patients argued that they think rarely of their disease, 10% thought about it every day. Traumatic evidence was detectable in most of them. Physical pain was the most reported stress, mainly during hospitalisation (93%), as well as psychological suffering (83%). Afterwards, the mostly often-reported stress was psychological pain (61%). Sixty-six percent declared that they still experience psychological and health consequences at the time of the interview, in some cases reported as a handicap in their life. In 83% of the cases they considered themselves as cured, nevertheless fear of relapse persisted in 1/3. Ninety percent said they have a pleasant life, 56% did not like to talk about leukaemia and 70% thought they could have died. For 85%, disease has been the most important event of their life and 75% testify to repercussions of the disease on their family (family relationship changes, overprotection, siblings difficulties). CONCLUSION: Most of these patients declared to be 'as the others' and developed life projects, but overcoming the pain experience of the disease remained difficult. This study emphasized the need for long-term continuous information and reinforces the importance of addressing treatment psychological and physical pain mainly after the initial hospitalisation period.

[Factors impacting on antiretroviral therapy compliance in HIV positive adolescents]. / Observance du traitement antirétroviral de l'adolescent séropositif pour le VIH.

UNLABELLED: Is poor treatment observance frequently observed in HIV positive adolescent population, due to the adolescent developmental process, their experience of living with HIV, or lack of information on the disease or treatment? METHODS: We interviewed the 29 HIV positive adolescents followed up in one pediatric reference center. Confidential interviews were performed according to a standard questionnaire by psychologist and research nurse. RESULTS: Seventy-nine percent had stopped at least once a time their treatment who was the major barrier to their sense of freedom behind their adolescence (one-third of them decided to stop it more than one month), although 75% knew the potential consequences and had a good information about their seeks. Fifty-five percent expressed feelings of loneliness or depression, yet 75% consider they had a pleasant life because they had a normal life. In fact, the secret and silence about HIV were the price for this normality. CONCLUSION: Being dependent upon a treatment is a major constraint on the lives of HIV positive adolescents. Although they are fully informed, the deliberate interruption of treatment could attest of their expressed need for autonomy and medical prescription have to be careful with this problem.