Volume 5 Supplement 1
Psychological aspects of living with rare disease: development of psychological skills of rare disease patients. How to improve patients’ quality of life by developing psychological skills necessary to cope with the disease
© Wierzba et al; licensee BioMed Central Ltd. 2010
Published: 19 October 2010
Based on the example of psycho-education project for PKU (Phenylketonuria), patients and carers in Pomerania region (Poland), could draw general conclusion: for the improvement of patients well-being, not only medical care, but also psychological knowledge and skills are very important. Some psychological skills are crucial to cope efficiently with the disease and patients and carers should be trained.
Parents of small children with PKU (age 0-3)
Teenagers with PKU (age 14-18)
Young women with PKU (age 18-25)
Parents of small children: building psychical strength and developing new attitudes.
Teenagers: getting ready for independent life.
Young women: preparing to be a mother.
To cope efficiently with the disease all patients and carers need both:
a) Basic medical information about the disease and its treatment
b) Basic psychological information about the mechanisms connected with the disease and psychological skills necessary to cope with it.
short medical education module
psycho-education workshop, aiming at delivering basic knowledge and training skills such as self-motivation, self-discipline, self-reliance, resistance to stress, optimism, communication skills etc.
Although there are some psychological skills specific for different groups of patients and careers, the above mentioned skills are quite universal and can be helpful for many rare disease patients and carers.
This article is published under license to BioMed Central Ltd.