A web-based psychological support program for caregivers of children with rare chronic diseases: a randomized controlled trial.

Background: Approximately 50% of rare diseases have symptom onset during childhood. A high level of nursing care and an often uncertain prognosis put caregivers of the affected children at high risk for psychological distress. At the same time, their caregivers have limited access to appropriate psychological care.

Prolonged Grief, Posttraumatic Stress, and Depression Among Bereaved Parents: Prevalence and Response to an Intervention Program.

Bereaved parents may experience diverse psychological symptoms. Possible interventions are not yet well established. In this study, the psychological symptoms of 323 bereaved parents (mean age = 39.

Postinfectious Bronchiolitis Obliterans in Children: Diagnostic Workup and Therapeutic Options: A Workshop Report.

Bronchiolitis obliterans (BO) is a rare, chronic form of obstructive lung disease, often initiated with injury of the bronchiolar epithelium followed by an inflammatory response and progressive fibrosis of small airways resulting in nonuniform luminal obliteration or narrowing. The term BO comprises a group of diseases with different underlying etiologies, courses, and characteristics. Among the better recognized inciting stimuli leading to BO are airway pathogens such as adenovirus and mycoplasma, which, in a small percentage of infected children, will result in progressive fixed airflow obstruction, an entity referred to as postinfectious bronchiolitis obliterans (PIBO).

Patient education for children with interstitial lung diseases and their caregivers: A pilot study.

Objective: Patient education in children with rare chronic diseases like children's interstitial lung disease (chILD) remains a challenge.

Aims: To develop and evaluate a component-based educational program for individual counselling and to improve patients' and caregivers' self-efficacy and treatment satisfaction. Furthermore, to create chILD-specific educational material and assess physicians' satisfaction with the intervention as well as patients' health-related quality of life (HrQoL).

[Quality criteria of internet-based cognitive-behavioral interventions for children and adolescents and their parents - A systematic review].

Quality criteria of internet-based cognitive-behavioral interventions for children and adolescents and their parents - A systematic review This study provides an overview of existing internet-based evidence-based cognitive behavioral interventions (iCBT) for children/adolescents and their parents. The studies were evaluated based on preliminary defined quality criteria regarding their usability in the healthcare system. The review was performed according to PRISMA guidelines and evaluated the scientific literature concerning to iCBT.

Development and validation of a health-related quality of life questionnaire for pediatric patients with interstitial lung disease.

Purpose: Children's interstitial lung disease (chILD) is often associated with multiple burdens and chronic impairment of health-related quality of life. Patient reported outcomes describe the patients' perspective on medical conditions and their treatments. We aimed to develop and evaluate the psychometric properties of a chILD-specific PRO (chILD-QoL) as an instrument for monitoring the patients' health status.

Outcomes of an enhancement study with additional psychoeducational sessions for healthy siblings of a child with cancer during inpatient family-oriented rehabilitation.

Objective: Chronic illness of a child puts healthy children of the family at risk of distress. Previous studies have demonstrated that healthy children's psychological symptoms can be reduced when the child knows more about the disease. So far, there is limited evidence of the effectiveness of psychoeducational interventions for healthy children.

[Psychometric Properties of the German Version of the Sibling Perception Questionnaire (SPQ)].

The Sibling Perception Questionnaire (SPQ) measures the impact a cancer disease of a child has on a sibling's interpersonal relations in the family, communication, intrapersonal perceptions and fear of the disease. Aim of this study was the psychometric evaluation of the German version of the SPQ. For this purpose, data of 216 healthy siblings including 164 self-reports and 212 parent reports were gathered.

Predictors of health-related quality of life in children with chronic heart disease.

Objective: Chronic paediatric heart disease is often associated with residual symptoms, persisting functional restrictions, and late sequelae for psychosocial development. It is, therefore, increasingly important to evaluate the health-related quality of life of children and adolescents with chronic heart disease. The aim of this study was to determine medical and socio-demographic variables affecting health-related quality of life in school-aged children and adolescents with chronic heart disease.