Parenting stress in mothers with cystic fibrosis.

Aim: To assess the parenting experience of mothers with cystic fibrosis (CF) and to compare with normative data.

Methods: Cross-sectional study with a validated generic parental stress questionnaire (PSQ). This PSQ differentiates four components of parental stress: main factor "parental stress", compounding factor "role restrictions", protective factors "support from spouse", and "social support".

Patient experience in cystic fibrosis care: Development of a disease-specific questionnaire.

Objectives: The aim of this study was to develop valid and reliable disease-specific questionnaires for adult patients with cystic fibrosis and for parents of minors with cystic fibrosis for assessing patient experience with cystic fibrosis care.

Methods: The pilot versions of the questionnaires were developed based on a literature review, interviews with health professionals and focus groups. A postal survey with two reminders was conducted in 56 German cystic fibrosis centres recruiting 2874 participants.

European Cystic Fibrosis Society Standards of Care: Best Practice guidelines.

Specialised CF care has led to a dramatic improvement in survival in CF: in the last four decades, well above what was seen in the general population over the same period. With the implementation of newborn screening in many European countries, centres are increasingly caring for a cohort of patients who have minimal lung disease at diagnosis and therefore have the potential to enjoy an excellent quality of life and an even greater life expectancy than was seen previously. To allow high quality care to be delivered throughout Europe, a landmark document was published in 2005 that sets standards of care.

Guiding principles on how to manage relevant psychological aspects within a CF team: interdisciplinary approaches.

Managing CF can be emotionally and physically challenging for patients and their relatives. The disease and its treatment influence the ability to tackle normal tasks of daily living and unexpected life events. The context within which psychologists work varies according to different cultural backgrounds and their professional and theoretical memberships.

Lung transplant recipients' views on the integration of their new organs.

Aim: Although donorship issues and the integration of the new organs are the most distinguishing aspects of lung transplantation (LTx) compared to other kinds of 'high-tech' medicine, there is a paucity of papers on that matter. Therefore, we aimed to evaluate these aspects in young adult LTx recipients with at least 1-year survival.

Methods: Semi-structured interviews; content analysis of specific parts of the interviews; frequency distributions of resulting categories.

Disease impact and disease-unrelated strain in parents of children with rheumatic disease: is there an influence on disease-related information needs?

Objective: To explore the information needs of parents of children with juvenile idiopathic arthritis and other rheumatic diseases with emphasis on possible intervening factors, such as disease-related or disease-unrelated strain.

Methods: A cross-sectional, anonymous survey using a purpose-designed questionnaire, incorporating, among others, the Impact on Family Scale. The questionnaire was sent to 146 families continuously attending a pediatric rheumatology outpatient clinic.

Parental knowledge and behaviour to prevent environmental P. aeruginosa acquisition in their children with CF.

Background: Chronic infection with Pseudomonas aeruginosa (PA) is associated with an accelerated decline of lung function in patients with cystic fibrosis (CF). Precautions to avoid contact with PA from the environment have been recommended by caregivers and are being carried out by many families with CF children. The present study was conducted to portray the spectrum of hygienic measures and to evaluate the restrictions and impact caused by these measures.

Consulting the "experts": a pilot study on perceptions of professional support among lung transplant recipients and accompanying relatives.

Background: Lung transplantation is extremely stressful for patients and accompanying support persons.

Purpose: To improve delivery of care, we designed a cross-sectional study about unmet needs and perceived helpfulness of staff.

Methods: The sample consisted of 30 adult lung transplant recipients with cystic fibrosis (and 22 relatives) and 20 age-matched recipients with other reasons for transplantation (and 17 relatives).

Different opinions of physicians on the importance of measures to prevent acquisition of Pseudomonas aeruginosa from the environment.

Background: Since chronic infection with mucoid Pseudomonas aeruginosa (PA) is associated with deteriorating lung function, many parents of young children with cystic fibrosis (CF) fear the first PA positive throat swab as a milestone in the progression of the disease. To reduce the risk of PA acquisition from the environment, they perform preventive measures at home or outdoors.

Methods: In an attempt to evaluate the attitude of CF physicians towards these measures and the respective consulting practice, we mailed a questionnaire to all 65 certified paediatric CF centres in Germany.

Parental fears of Pseudomonas infection and measures to prevent its acquisition.

Background And Aim Of The Study: Chronic infection with Pseudomonas aeruginosa (PA) is associated with accelerated worsening of lung disease in patients with cystic fibrosis (CF). Fears of PA are widespread among parents of CF children, and many parents take precautions at home to prevent acquisition of the bacterium from the environment. The present study was undertaken to describe the type and intensity of these activities.

How do adolescents with juvenile chronic arthritis consider their disease related knowledge, their unmet service needs, and the attractiveness of various services?

Aims: To explore the information needs of adolescents with juvenile chronic arthritis (JCA) with respect to patient education and other measures to promote self-management.

Methods: Standardized cross-sectional inquiry concerning disease-related knowledge, perceived importance of information giving, unmet needs as well as perceived attractiveness of a range of services (lecture, structured patient education, support group, self-help group) to promote self-management.

Sample: N = 48 adolescents (68% of all adolescents with JCA of our outpatient clinic); mean age x = 14.