Biomedical subjects

I Götz

Publications and source records attributed to I Götz.

9 recordsLinked to original sources

PubMed2003

Survival without transplant.

Patients with severe cystic fibrosis who face lung transplant proposal react in different ways to the offer of this potentially life prolonging therapy. Little is known about those patients who refused the operation. This article describes various behaviour patterns and reactions following the transplant proposal. The major reasons for refusal of lung transplantation are based on personal experiences and encounters and on psychological and medical considerations. Only a subgroup of patients sticks to the initial decision of refusing the operation. Other patients question their decision and fluctuate between refusal and acceptance. A third group of patients reverses the decision mostly as a result of a significant life event. The decision not to undergo lung transplantation needs to be viewed as a reversible one and in the context of extreme physical and psychological vulnerability on the part of the patients. Health professionals should recognise the potential for change, remain non-judgmental and flexible, and adjust their services to the respective circumstances.

Cystic Fibrosis↗

PubMed2000

Cystic fibrosis: psychological issues.

To most parents the diagnosis of cystic fibrosis (CF) in their child represents a severe blow because they are confronted with an unwanted and unexpected disease that completely changes their whole life. Common reactions such as shock, denial, sadness and anger have to be mastered before a gradual adaptation to reality will be possible. The provision of support by a multidisciplinary team, including a psychologist, that offers its services from diagnosis and puts an emphasis on preventive care may help to achieve, maintain and improve physical and mental health, and social functioning in both patients and parents. CF not only affects the individual but the whole family, and the presence of biopsychosocial stressors may add to the burden caused by the disease. CF does not necessarily cause long-term serious family dysfunction, but it changes family structures and often taxes the family system beyond its strength. Even if there is only partial adherence to the demanding and complex treatment regimen, health professionals need to acknowledge the tremendous underlying effort on the part of the families. As a consequence of their continuous endeavours, many individuals with CF do lead remarkably normal lives with the prospect of gene therapy and lung transplantation, maintaining hope in case of severe deterioration.

Child↗

PubMed1997

Health-independent lung transplantation information of parents of children with cystic fibrosis.

BACKGROUND: Twenty-one to 63% of patients with cystic fibrosis (CF) accepted for lung and heart-lung transplantation die on the waiting list. A significant delay between referral and assessment may present an unrecognized hazard toward mortality. METHODS: All parents of children with CF aged 3 to 15 years enrolled in the Vienna CF center were sent questionnaires to investigate their attitudes toward provision of information on lung transplantation (LT). RESULTS: Complete questionnaires were obtained from 59 mothers and 47 fathers of 60 children. Thinking of LT evoked anxiety among 88% of parents, yet 54% wanted to get information at the present time. Parents younger than 30 years and older than 40 years were most interested in obtaining information. Recommendations for the clinicians showed preference for early over health deterioration-induced information (58% vs. 42%). The predominant fears associated with LT were the risk of dying (91%), physical pain (90%), and graft rejection (80%). First information on LT should be presented by the usual CF physician (96%) in the form of a face-to-face conversation (97%) and in the absence of the child (77%). Among the desired content areas, information about the chances LT offers had highest priority (86%). Thorough explanation of the rationale behind the transplant proposal (81%) and details of the whole procedure were requested. If their child were to actually need a transplant, many parents would rely on the doctor's assistance in jointly talking to the child (64%). The most helpful interventions for decision-making included meetings with successfully transplanted individuals (84%) and repeated discussions with experts. CONCLUSIONS: Information may be implemented in medical care as a preventive strategy to avoid dangerous delays in case of unexpected turns toward the need for LT. A policy of recognition and acceptance of parental reluctance is mandatory.

Adolescent↗

PubMed1997