End of life care in Duchenne muscular dystrophy

Toward a comprehensive evaluation of the impact of electronic aids to daily living: evaluation of consumer satisfaction

“…It is based upon the theoretical foundations of Scherer's Matching Person and Technology Model (MPT), 12 and the tridimensional paradigm of Weiss-Lambrou (1993) as reported in Demers et al 10 Scherer's model emphasizes the importance of matching a person's personality and temperament with salient features of the assistive technology (AT) and characteristics of the environment in which the technology is used. 1 2 Scherer argues that the compatibility of technology, person and environment in¯uences acceptance and continued use of that technology. Weiss-Lambrou's paradigm is consistent with the MPT model, noting that the environment, the user and the AT are the main categories that in¯uence satisfaction.…”

End-of-life issues in genetic disorders: Literature and research directions

“…5 For example, physicians hesitated to begin therapy that had only a small chance of succeeding because they did not want to withdraw that therapy should it fail. It is now recognized that "no moral or legal difference exists between withholding and withdrawing treatment."…”

“…Reprinted from Pediatric Neurology, copyright 1993, with permission from Elsevier Science. 5 life in social and cognitive terms. 5 These differences emphasize that caregivers and family members may not be fully aware of the patient's wishes or values.…”

“…5 life in social and cognitive terms. 5 These differences emphasize that caregivers and family members may not be fully aware of the patient's wishes or values. When considering using different therapies in genetic disorders, health care providers need to consider that quality of life is deeply subjective and personal, and contextual factors such as the effect on family members enter into the assessment of quality of life.…”

“…The articles reviewed for the present report include primarily case reports and descriptive studies. Some of the issues addressed in the papers include but are not limited to the following: psychological and bereavement issues [1][2][3][4] ; cost of care at the end of life 5,6 ; decision-making regarding use of technological interventions [5][6][7][8] ; psychosocial reactions of parents and siblings 1,7,9 ; availability of supportive services 2 ; coordination-of-care concerns 2 ; advance directives 2,5,6 ; effect of death on siblings 1,2,4,7 ; quality of life 2,5,10,11 ; ethics 8,12 ; and palliative care. 2,11,13,14 Each of the papers included in this review approaches the issue from a unique, but often limited perspective such as a medical and cultural perspective of starting mechanical ventilation for Werdnig-Hoffmann disease patients in Japan 8 or costs and availability of palliative care in Australia.…”