ABSTRACT
PURPOSE: Marfan syndrome (MFS) is a connective tissue disorder that affects skeletal, ocular, pulmonary, cardiovascular, and central nervous systems. Psychological and physiologic symptoms may lead to diminished quality of life (QoL) in individuals with MFS compared with healthy individuals. Currently, there is little evidence regarding the impact of MFS on executive function and QoL. This study examined perceptions of executive function and QoL among persons with MFS. METHOD: A total of 318 participants with MFS completed surveys assessing perceptions of executive function abilities and QoL. Responses to executive function questions were grouped using principle component analysis. Responses to QoL questions were separated into overall QoL, questions dealing with satisfaction of QoL, and importance placed on aspect of QoL. RESULTS: Principle component analysis revealed that executive function difficulties, particularly mental fatigue, associated with MFS symptoms affect QoL satisfaction and total QoL. Interestingly, medication status did not significantly impact QoL, over and above executive function difficulties. CONCLUSIONS: The findings of the current study suggest that individuals with MFS may experience specific executive function difficulties which impact QoL. These findings also have implications for clinicians who work with individuals with MFS.
Subject(s)
Executive Function/physiology , Marfan Syndrome/pathology , Marfan Syndrome/psychology , Quality of Life/psychology , Adolescent , Adult , Aged , Aged, 80 and over , Demography , Female , Humans , Male , Middle Aged , Personal Satisfaction , Self Report , Surveys and Questionnaires , Young AdultABSTRACT
Few, if any, mindfulness-based bereavement care models exist. The ATTEND (attunement, trust, touch, egalitarianism, nuance, and death education) model is an interdisciplinary paradigm for providers, including physicians, social workers, therapists, nursing staff and others. Using a case example to enhance the breadth and depth of understanding, this article focuses on attunement as a means to moderate the negative effects of traumatic bereavement, support the framework for posttraumatic growth in the bereaved, improve psychological outcomes for providers, and set the stage for the other aspects of the ATTEND model.