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213. Protocol and patient information leaflet Burkholderia cepacia
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Supplement / The Netherlands Journal of Medicine 54 (1999) S3 –S84
themselves the duties to obtain benefits from social security but also working up the role they can assume in the labor market as chronically ill people. So at the time of this passage the whole project of each patient’s adult life and the self-image are thought over. Till now 28.22% pts (20M, 26F; 18–40 yrs age range) underwent a structured interview developed to know their working conditions and amount of benefits obtained by social security. The education level of interviewees range from 8 yrs (32.6%) to 17 yrs (8.69%); most of pts have a high school certificate (41.30%). 60.87% have a regular job; 15.22% are students and 21.73% are unemployed. 46.43% of employed pts got their job by means of employment lists for disabled people. Our conclusion is that transition to adult health care cannot be considered just as a bureaucratic step; it gives the opportunity to meet the challenge that their coming of age issues to pts themselves and health professionals. The Social Worker support must continue to be a part of a global approach to grown up pts with increasing social needs.
213. Protocol and patient information leaflet Burkholderia cepacia. D. Verseput, J. Wilms, J. Kraan, J. Gerritsen. Coordination Centre for the Chronically Ill ( CCCI), Groningen University Hospital, The Netherlands. Respiratory disease caused by Burkholderia cepacia (BC) is an increasing problem in Cystic Fibrosis (CF). BC not only causes medical complications but also psycho social stress due to uncertainty about prognosis, social isolation and sometimes contradictory guidelines. In cooperation with the multidisciplinary CF team of the Groningen University Hospital and the Dutch Cystic Fibrosis ¨ Foundation the Coordination Centre for the Chronically Ill (CCCI) developed a BC protocol and patient information leaflet, in order to obtain agreement about isolation guidelines and to improve information for patients, parents / caregivers and partners. The protocol was written after thorough study of the literature and protocols from other hospitals. General information about BC, microbiological diagnosis, prevention, infection and treatment is given. Isolation guidelines for hospital visits and private situations are presented. Finally information about psycho social consequences and lung transplantation is given with the telephone numbers of the multidisciplinary CF team, CCCI and the Dutch Cystic Fibrosis Foundation for further information. The implementation of the final protocol and leaflet in our hospital and in the Northern region is in the first place a matter for the multidisciplinary CF team of the Groningen University Hospital and the CCCI. It’s our intention to 1) obtain consensus about the guidelines and leaflet in The Netherlands and 2) to publish a patient information leaflet based on Dutch consensus by the Dutch Cystic Fibrosis Foundation.
214. Evaluating the shared care model of CF-treatment and the role of a specialized nurse. E.G. Visser, A. Kok, H.A.W.M. Tiddens, M. Sinaasappel, J.C. de Jongste. Dept. of Paediatrics,
Erasmus University Medical Centre, Sophia Children’ s Hospital, Rotterdam, The Netherlands. In the South Western part of the Netherlands CF-children are treated in the CF-centre of the Sophia Children’s Hospital (SKZ) in Rotterdam. The multidisciplinary CF-team is responsible for the care and treatment of CF-patients. Recently two specialized nurses were added to the CF-team. Approximately 50% of the 150 CF-patients are exclusively treated in the CF-centre, the others attend the CF-centre and the local hospital (‘‘shared care’’). Each of those is assessed in the CF-centre at least once a year. This shared-care model has functioned for some years, but was never formally evaluated. Objectives: The objective of this study is to evaluate the shared-care model by listing the experiences and opinions of CF-patients, parents and (para-)medical staff. In addition we want to obtain information on the patient’s expectations of specialized CF-nurses. Methods: Postal questionnaires and structured interviews of all CF-patients and a selection of caregivers, respectively. Results: The firsts results of this study will be presented. Supported by a grant from the IKW/ CCZ.
215. Children with cystic fibrosis in hospital. Hospitalization syndrome. S.M. Ockhorst-Boon, A. van Lieshout. Juliana Childrens Hospital, The Hague, The Netherlands. Cystic Fibrosis is a longterm chronic disease. After the diagnosis Cystic Fibrosis, the child and its parents need care in many respects. Some children are hospitalized frequently for an intensive therapeutic treatment. During their stay in hospital it is important to prevent hospitalization syndrome. With proper nursing this can be achieved. The nurse who has the prime responsibility for the care of the child also takes care of the coordination between all members of the multidisciplinary team. He / she uses a protocol. Points meriting attention are:
• The child should be given individualised care. • Daily activity programme in which rest, entertainment, recreation and relaxation are included. • Special activities relating to the disease, such as: – physiotherapy, – nebulization therapy, – lungfunction testing, – intravenous antibiotic therapy, – proper nutrition, – elementary / secondary school. • Care should be taken to prevent the child from feeling exceptional. • Parents should be given information about the nature of the disease and treatment possibilities. For this it is important to have an open communication between the staff, the patient and the parents.
The nurse who’s responsible for the primary care tunes the care on the child’s age and development. This depends on the extent to which the child is capable to voice its feelings, to make choices and is aware of its own situation.
Supplement / The Netherlands Journal of Medicine 54 (1999) S3 –S84
themselves the duties to obtain benefits from social security but also working up the role they can assume in the labor market as chronically ill people. So at the time of this passage the whole project of each patient’s adult life and the self-image are thought over. Till now 28.22% pts (20M, 26F; 18–40 yrs age range) underwent a structured interview developed to know their working conditions and amount of benefits obtained by social security. The education level of interviewees range from 8 yrs (32.6%) to 17 yrs (8.69%); most of pts have a high school certificate (41.30%). 60.87% have a regular job; 15.22% are students and 21.73% are unemployed. 46.43% of employed pts got their job by means of employment lists for disabled people. Our conclusion is that transition to adult health care cannot be considered just as a bureaucratic step; it gives the opportunity to meet the challenge that their coming of age issues to pts themselves and health professionals. The Social Worker support must continue to be a part of a global approach to grown up pts with increasing social needs.
213. Protocol and patient information leaflet Burkholderia cepacia. D. Verseput, J. Wilms, J. Kraan, J. Gerritsen. Coordination Centre for the Chronically Ill ( CCCI), Groningen University Hospital, The Netherlands. Respiratory disease caused by Burkholderia cepacia (BC) is an increasing problem in Cystic Fibrosis (CF). BC not only causes medical complications but also psycho social stress due to uncertainty about prognosis, social isolation and sometimes contradictory guidelines. In cooperation with the multidisciplinary CF team of the Groningen University Hospital and the Dutch Cystic Fibrosis ¨ Foundation the Coordination Centre for the Chronically Ill (CCCI) developed a BC protocol and patient information leaflet, in order to obtain agreement about isolation guidelines and to improve information for patients, parents / caregivers and partners. The protocol was written after thorough study of the literature and protocols from other hospitals. General information about BC, microbiological diagnosis, prevention, infection and treatment is given. Isolation guidelines for hospital visits and private situations are presented. Finally information about psycho social consequences and lung transplantation is given with the telephone numbers of the multidisciplinary CF team, CCCI and the Dutch Cystic Fibrosis Foundation for further information. The implementation of the final protocol and leaflet in our hospital and in the Northern region is in the first place a matter for the multidisciplinary CF team of the Groningen University Hospital and the CCCI. It’s our intention to 1) obtain consensus about the guidelines and leaflet in The Netherlands and 2) to publish a patient information leaflet based on Dutch consensus by the Dutch Cystic Fibrosis Foundation.
214. Evaluating the shared care model of CF-treatment and the role of a specialized nurse. E.G. Visser, A. Kok, H.A.W.M. Tiddens, M. Sinaasappel, J.C. de Jongste. Dept. of Paediatrics,
Erasmus University Medical Centre, Sophia Children’ s Hospital, Rotterdam, The Netherlands. In the South Western part of the Netherlands CF-children are treated in the CF-centre of the Sophia Children’s Hospital (SKZ) in Rotterdam. The multidisciplinary CF-team is responsible for the care and treatment of CF-patients. Recently two specialized nurses were added to the CF-team. Approximately 50% of the 150 CF-patients are exclusively treated in the CF-centre, the others attend the CF-centre and the local hospital (‘‘shared care’’). Each of those is assessed in the CF-centre at least once a year. This shared-care model has functioned for some years, but was never formally evaluated. Objectives: The objective of this study is to evaluate the shared-care model by listing the experiences and opinions of CF-patients, parents and (para-)medical staff. In addition we want to obtain information on the patient’s expectations of specialized CF-nurses. Methods: Postal questionnaires and structured interviews of all CF-patients and a selection of caregivers, respectively. Results: The firsts results of this study will be presented. Supported by a grant from the IKW/ CCZ.
215. Children with cystic fibrosis in hospital. Hospitalization syndrome. S.M. Ockhorst-Boon, A. van Lieshout. Juliana Childrens Hospital, The Hague, The Netherlands. Cystic Fibrosis is a longterm chronic disease. After the diagnosis Cystic Fibrosis, the child and its parents need care in many respects. Some children are hospitalized frequently for an intensive therapeutic treatment. During their stay in hospital it is important to prevent hospitalization syndrome. With proper nursing this can be achieved. The nurse who has the prime responsibility for the care of the child also takes care of the coordination between all members of the multidisciplinary team. He / she uses a protocol. Points meriting attention are:
• The child should be given individualised care. • Daily activity programme in which rest, entertainment, recreation and relaxation are included. • Special activities relating to the disease, such as: – physiotherapy, – nebulization therapy, – lungfunction testing, – intravenous antibiotic therapy, – proper nutrition, – elementary / secondary school. • Care should be taken to prevent the child from feeling exceptional. • Parents should be given information about the nature of the disease and treatment possibilities. For this it is important to have an open communication between the staff, the patient and the parents.
The nurse who’s responsible for the primary care tunes the care on the child’s age and development. This depends on the extent to which the child is capable to voice its feelings, to make choices and is aware of its own situation.