Concerns, Desires and Expectations Of Surgery For Adolescent Idiopathic Scoliosis: A Comparison Of Patients’, Parents’ & Surgeons’ Perspectives. Master of Science, 2008 Unni G. Narayanan Department of Health Policy, Management & Evaluation University of Toronto ABSTRACT This study explored the concerns, desires (goals) and expectations of adolescents undergoing surgery for idiopathic scoliosis, and contrasted their priorities with those of their parents and surgeons. Parents were more concerned than their children about the consequences of scoliosis and of surgery. With the exception of improving physical appearance, surgeons' goals of surgery were different from those of either the patients or parents. There was little agreement among surgeons about the natural history of scoliosis, other goals of surgery and the likelihood of specific outcomes. Parents wanted and expected more from surgery than their children. Parents and patients had greater expectations of surgery than surgeons. Although adolescents had different priorities from their parents, parents were aware of these differences and reliably predicted their children’s priorities. These findings have important implications on shared decision-making and informed consent, and might contribute to better understanding and measurement of outcomes that matter to patients.

Concerns, Desires and Expectations Of Surgery For Adolescent Idiopathic Scoliosis: A Comparison Of Patients’, Parents’ & Surgeons’ Perspectives. Master of Science, 2008 Unni G. Narayanan Department of Health Policy, Management & Evaluation University of Toronto ABSTRACT This study explored the concerns, desires (goals) and expectations of adolescents undergoing surgery for idiopathic scoliosis, and contrasted their priorities with those of their parents and surgeons. Parents were more concerned than their children about the consequences of scoliosis and of surgery. With the exception of improving physical appearance, surgeons' goals of surgery were different from those of either the patients or parents. There was little agreement among surgeons about the natural history of scoliosis, other goals of surgery and the likelihood of specific outcomes. Parents wanted and expected more from surgery than their children. Parents and patients had greater expectations of surgery than surgeons. Although adolescents had different priorities from their parents, parents were aware of these differences and reliably predicted their children’s priorities. These findings have important implications on shared decision-making and informed consent, and might contribute to better understanding and measurement of outcomes that matter to patients.

Dame Cicely Saunders created the hospice movement to be a voice for the voiceless. Those needing palliative care needed someone to speak for them and ensure they received the care they needed and deserved. Today, more than forty years later, the voice of the patient and family are in danger of being lost. This research aimed to discover what patients and their families thought were the most important priorities in palliative care. If hospices, and any other facility that cares for the dying, are to give the care that patients and their families need then the research in this thesis shows benefit to those patients and families if asked to identify what are their needs. If palliative care is to be truly holistic we need to find out from patients, and from their families, what they believe is important. Using purposeful sampling, five patients and five family members were recruited from a hospice in-patient unit. In-depth interviews with open-ended questions were conducted with participants who were asked to share what had affected their care, or their relative’s care, while admitted to the hospice. These interviews were recorded and transcribed in a qualitative descriptive study to identify and analyse what these participants described as the ‘important thing’ in palliative care. Specific, tangible detail was sought in order to define the ‘essence’ of palliative care as determined by those receiving it. Thematic analysis revealed four key themes and associated sub-themes relating to: the people who work in a hospice; the environment; philosophy and holistic care. This research enables those caring for the dying in any context, to use the information shared by these individuals as guidance to enhance the care they offer to a dying person so that their final days may be more tolerable, even perhaps pleasurable: to help them ‘live until they die’.