BACKGROUND: Little is known about the quality of life of @entity1 with congenital and generalized @entity272 . Describing life history and quality of life from an individual perspective could increase understanding of living with generalized @entity5654 for nursing staff and others. AIM: The aim of our study was to illustrate how middle-aged and older @entity1 with @entity17433 or @entity5656 describe the effects of their disease on their quality of life. METHODS: Six @entity1 and four @entity1 aged 56-80 years participated. A global clinical assessment of the severity of the disease was performed. The Nottingham Health Profile (NHP) questionnaire was used to investigate quality of life. @entity1 were interviewed face-to-face about childhood and adulthood experiences of living with a @entity272 . Interview data were analysed using content analysis. RESULTS: Interview data were assigned to two categories, childhood and adulthood, and organized under 16 themes. All interviewees reported that their @entity272 had affected them negatively to varying degrees during their entire lives, and that the most problematic period was childhood. Coping strategies used during childhood were hiding of the skin and developing shyness. There were no correlations between objective signs of @entity5657 and the NHP scores. CONCLUSIONS: @entity5654 appears to affect several aspects of life negatively, and it is hoped that an understanding of the effects of the disease will lead to more efficient nursing care.

Quality of life in adults with XXXX .

@entity1 :: ('9606', 'Species') :: ['women', 'Participants', 'people', 'men'] @entity5656 :: ('MESH:D017488', 'Disease') :: ['epidermolytic hyperkeratosis'] @entity17433 :: ('MESH:D017490', 'Disease') :: ['lamellar ichthyosis'] @entity272 :: ('MESH:D012871', 'Disease') :: ['skin disease', 'skin diseases'] @entity5654 :: ('MESH:C538281', 'Disease') :: ['Congenital ichthyosis', 'congenital ichthyosis'] @entity5657 :: ('MESH:D007057', 'Disease') :: ['ichthyosis']
@entity5654 :: (MESH:C538281,Disease) :: ['congenital ichthyosis']
