Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severity, ranging from mild forms to severe forms, with chronic progression. The aim of this study was to identify and specify the problems of parents of a child with EB. Qualitative research methodology was used, comprising a series of semistructured interviews with eleven families. The key problems of parents were broken down into three themes, related to the child, the family, and the care providers. These themes comprised nine categories, including (1) the child being different, (2) the child suffering pain, (3) feelings of uncertainty, (4) restrictions on employment and leisure time, (5) difficulties in organization of care, (6) never being off-duty, (7) family problems, (8) ignorance and lack of skills of care providers, and (9) resistance to difficult care. Despite the great variance in clinical pictures of the different (sub)types of EB, the main problems parents experienced appear quite similar. However, the problems did appear to differ in extensiveness, intensity, and gravity.

This first trial evaluating cognitive treatment of illness perceptions concerning CLBP showed statistically significant and clinically relevant improvements in patient-relevant physical activities at 18 weeks.

Rehabilitation should put greater effort into supporting stroke survivors and their families in home-making and community reintegration processes, and help them to re-own and renegotiate their disabled bodies and changed identities in real life. Implications for Rehabilitation The experienced self-body split, identity confusion and related mourning process should be foregrounded in the post-discharge phase rather than functional recovery, in order to help stroke survivors understand and come to terms with their changed bodies and selves. In the post-discharge and reintegration phases stroke survivors should be coached in rebuilding meaningful relations to their bodies, home and communities again. This home-making process should start at real-life sites where stroke survivors wish to (inter)act.