Stories of experiences of care for growth hormone deficiency: the CRESCERE project.

AIMS: Growth hormone deficiency therapy is demanding for patients and caregivers. Teams engaged in the clinical management of growth hormone deficiency therapy need to know how families live with this condition, to provide an adequate support and prevent the risk of withdrawal from therapy. METHODS: Using Narrative Medicine, testimonies from patients, their parents and providers of care were collected from 11 Italian centers. Narrations were analyzed throughout an elaboration of recurring words and expressions. RESULTS: Although care management and outcomes were considered satisfying in the 182 collected narratives, recurring signals of intolerance among adolescents and the worry of not being well informed about side effects among parents are open issues. CONCLUSION: Narratives found that communication issues could decrease adherence and influence the physicians' clinical practice.

Family group psychotherapy to support the disclosure of HIV status to children and adolescents.

Disclosure of the HIV status to infected children is often delayed due to psychosocial problems in their families. We aimed at improving the quality of life in families of HIV-infected children, thus promoting disclosure of the HIV status to children by parents. Parents of 17 HIV-infected children (4.2-18 years) followed at our Center for pediatric HIV, unaware of their HIV status, were randomly assigned to the intervention group (8 monthly sessions of family group psychotherapy, FGP) or to the control group not receiving psychotherapy. Changes in the Psychological General Well-Being Index (PGWB-I) and in the Short-Form State-Trait Anxiety Inventory (Sf-STAI), as well as the HIV status disclosure to children by parents, were measured. Ten parents were assigned to the FGP group, while 7 parents to the controls. Psychological well-being increased in 70% of the FGP parents and none of the control group (p=0.017), while anxiety decreased in the FGP group but not in controls (60% vs. 0%, p=0.03). HIV disclosure took place for 6/10 children of the intervention group and for 1/7 of controls. Family group psychotherapy had a positive impact on the environment of HIV-infected children, promoting psychological well-being and the disclosure of the HIV status to children.

Psychosocial issues in children and adolescents with HIV infection evaluated with a World Health Organization age-specific descriptor system.

OBJECTIVES: After active antiretroviral therapy, children with HIV are clinically well, whereas psychosocial issues continue to influence their quality of life. The International Classification of Functioning, Disability and Health (ICF) of the World Health Organization evaluates health status and environmental and social factors associated with health. We investigated the efficacy of the ICF to describe the health status and needs of a cohort of children and adolescents with HIV seen at a reference center for pediatric AIDS in Europe. METHODS: A quantitative analysis of structured interviews was performed. Caregivers of children and adolescents with HIV infection in follow-up at 2 reference centers for pediatric AIDS were enrolled. Four major areas included in the ICF instrument were investigated: impairments of body structures; impairments of body functions; environmental factors; and activity limitations and restrictions to social life. RESULTS: Forty-one families of children with HIV were enrolled. Body structures and functions were marginally impaired, whereas environmental factors and psychosocial issues had a relevant impact on quality of life. Most families considered environmental factors to be "barriers"; these were poverty, unemployment, and single-parent family structure. Activity limitations and social restrictions were also reported in a few cases. Almost all parents reported problems in disclosing their child's HIV status because of the fear of social stigma. CONCLUSION: Psychosocial issues are part of the well-being of children with HIV. The ICF is a standard tool to evaluate the clinical and psychosocial status of children and adolescents with HIV infection and to measure the impact of therapeutic interventions and strategies on psychosocial functioning.